Contents
Chapter 1 Nitro 1
Chapter 2 Euthanasia 10
Chapter 3 The Jensen's Nursing Home Adventure 22
Chapter 4 Struggling 30
Chapter 5 Peace 55
Chapter 6 Disparate Kindness 63
Chapter 7 Obituary 74
Chapter 8 The Fisherman 84
Chapter 9 Husband's Farewell 94
Chapter 10 Afterword: Good Death 106
Chapter 11 Author's Notes 112
i
Preface
These eight short stories flow from my experience as a rural American
primary care physician, a general internist. I write pseudonymously because I
prefer to remain in the background; attention belongs to the players, for though
I write from experience, the stories are not about me. Some medical jargon is
there for flavor; it's how nurses and doctors talk, but you don't have to know
the jargon to understand the story.
Physicians are bound by the ethic of confidentiality: to tell stories,
without permission, about the people to whom I've provided care would be to
betray them, so these stories are fiction. Most of the characters and detail is
invented. But each story is rooted in real events, of which I was a spectator
or a main character.
Each story involves a death. A "good" death is chiefly one that occurs
within a good and a loving relationship. A "good" death is also not physically
agonizing. We physicians can provide analgesia, but we can't inject a
sociability serum into fractured relationships.
It would be appropriate, I suppose, to balance these tales with stories
about bad relationships or excruciating deaths; but I prefer not to do it.
There are more than enough of them, which I wish not to unearth from the
sepulchre of forgetfulness.
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Page i
Chapter 1
Nitro
Don Kilmer encountered angina one lovely June day after mowing the lawn,
though he didn't understand this until a long time later. It was the first hot,
humid day of summer, and the mowing tired him a lot more than usual. So much so
that he left the side yard for later, to do in the evening. As he walked to the
garage to put the mower away, he realized that he was a little sick to his
stomach. He didn't think his lunch could have done it, as he'd only had a
sandwich and milk, nothing like old salad that might have caused food poisoning.
There was a sense of fullness in his lower chest, like his stomach was full of
gas. He went into the house and sat down with a glass of iced tea, and as he
sipped at it, this all gradually dissipated into a diaphanous memory. He had no
idea that this might be coming from strain on his heart.
He didn't say anything about this to his wife Vi. He was a healthy guy.
Don knew what pain was, after years of farming, and he knew that hurts healed
up. Don didn't like complaining, and he didn't appreciate complainers. He was
71, had just retired from farming the year before, and was still bothered by the
indolence and inertia of town life. He was grateful to be rid of the heavy
work; that had gotten to be a burden years before he finally retired, but he
loved being busy. When they sold the farm and moved to Eagle Junction, the farm
property market was just past its peak, so they could afford to buy a little
house in town and live comfortably.
He was a thin, wiry man with alert, steel-blue eyes and a pleasant,
humorous disposition. He still got up at five, and did quiet chores around the
house and yard until the town woke up. Vi got up a little later, and they had
breakfast together between seven and eight. Then he walked the 10 blocks to the
Senior Center, where he worked as a volunteer to keep busy. During that summer,
especially on hot days, he would sometimes feel a little nauseated at the end of
the walk. So he ate lighter breakfasts, and he discovered that walking slower
and dawdling, stopping to talk to the neighbors who were out, made it more
pleasant. During the next winter, he started to feel a little discomfort in his
chest when he shoveled their small drive, or simply from going out into the cold
air when it was very cold.
More than two years after it started, just after his 74th birthday, Don
finally got around to mentioning his gassiness and nausea to Vi. He had started
driving the car to the senior center some days lately. Vi said, one morning at
breakfast, "You're not getting as much exercise as you used to. I see you've
1
Nitro
been taking the car to the Center pretty often lately. You need exercise. You
don't want to get run down."
"I get a little sick to my stomach when I walk there."1
"When did that start happening?"
"Oh, a couple of years ago. It's just bothering me more than it used to."
"Why didn't you tell me?"
"It's not important. I'm just getting old."
"I've watched you slowing down, and I've been wondering. I'm going to make
an appointment for you with my internist, Doctor Pettigrew."
She had been seeing doctor Pettigrew for three years, and had come to trust
him. He would listen to her jumble of complaints, her aches and frustrations,
periodically interrupting her litany with numerous, seemingly divergent
questions or asking for more detail than she'd thought was important. Then he'd
auscultate or palpate, and sometimes order blood to be drawn or xrays taken.
And then he'd sit and explain everything to her, how her body worked -- or
wasn't working -- whether the problem could be remedied, and what to do. He was
quite clear; in fact, some of her friends who had seen him complained that he
was too blunt; but she always left the office clear in her mind about her
troubles, and that was a comfort.
So she made an appointment for Don. And she went with him. She stayed
with him the whole time, except for the rectal. When she excused herself,
doctor Pettigrew smiled and said, "You aren't going to see anything you haven't
seen before," but Vi just said, "Call me back when you're done," and slipped
into the hall for a couple of minutes.
The news from the doctor wasn't really a surprise: The discomfort was
strain on his heart--angina--and Doctor Pettigrew prescribed medication. It
helped a good bit, and in the end Don was glad he had gone. One of the
medications was nitroglycerin. Don was a little surprised that a doctor would
be prescribing high explosive, and he was surprised again when the druggist gave
him a bottle smaller than his thumb.
Doctor Pettigrew had told him to put one under his tongue and let it
dissolve whenever he felt that fullness or nausea. He turned the tiny cap off
the tiny bottle to investigate, and was amazed to find a bunch of little white
pellets smaller than peppercorns. But it worked. It gave him a throbbing
headache for about fifteen minutes the first few times he tried it, but the
nausea dissolved from his chest while the pill dissolved under his tongue.
He quickly learned that by taking a nitro before he did anything strenuous
he could forestall the heaviness in his chest, so the ishy sick full feeling
didn't bother him so often; and nitro became his friend.
Over the next four years or so, by spells the chest discomfort got more
oppressive, and the limits of his endurance constricted. If Vi noticed a
change, or if Don was frustrated enough, they'd go see doctor Pettigrew. Always
together. Gradually, more and stronger pills were added to his list. Sometimes
-----------
1. Technical note: Throughout this manuscript, where long volley quotes are
used, one speaker is consistently indented in order to help the reader keep
track of who is speaking.
2
Nitro
Don joked that he wasn't sure whether the weight on his chest was the pills or
the angina. For sure, there wasn't any weight left in his wallet. None of the
pills was cheap, except his friend Nitro.
Eventually, doctor Pettigrew said, "Don, I know you're not afraid of dying,
and I know you're old. But it's taking a lot of medication to get poor control
of your chest pain. I'd be happy to set you up for a heart catheterization to
see if balloon angioplasty would let you quit some of these medicines. I think
you could take it. You're in pretty good shape."
Don said, "Doc, I feel OK. I can do what I need to, and the pain really
isn't all that bad." And he thought, I'm scared, and it's expensive, and Vi
doesn't like driving in that city traffic. And my chest really doesn't hurt
very much.
But Don was taking about as much medicine as he could handle. He told his
friends he had tried every type of heart pill in the book. It was only a mild
exaggeration. Some helped, some didn't. Some helped but were a nuisance in one
way or another. His pain became more constant. Then it started waking him up
in the middle of the night, sometimes two or three times.
He couldn't even walk to the front sidewalk without putting a nitro under
his tongue ahead of time and he had to use another one when he got back. He
didn't intend to tell Doctor Pettigrew this, but the doctor asked point-blank
questions, and Don didn't lie.
Vi always came with him. Doctor Pettigrew would say, "How many nitros are
you taking?" And Don would always say, "Oh, not very many." But if he'd had a
bad week, Vi would quietly and sternly add, "That's not true. He takes ten to
twenty nitros a day sometimes." Don would protest, "Some of them I take just in
case," but he knew as he said it that it sounded weak and evasive.
Don kept one bottle of nitro in his bedroom and one in his pocket; and,
just in case, Vi kept another in her purse. He felt like it was his lifeline.
It had gotten him through every time, and he felt safe only when a bottle was
with him.
Eventually even Don had to admit he was in a cage. It was frustrating.
Finally, doctor Pettigrew said, "Don, I don't want to push you into a procedure
you don't want to have. And you have the right to reject anything I suggest. I
just hate to see you crippled by this heart pain."
"You and I both know that this is going to kill you some day. We both know
you're old. I would just like you to have a heart cath to see if balloon
angioplasty could open up a clogged artery and give you some relief that the
pills can't."
Don said, "Wait a minute. I don't really know what you're talking about.
What do they do?"
Doctor Pettigrew said, "Well, they have you lie down on this miserably hard
table and torture you for couple of hours by waving small rubber tubes back and
forth inside your arteries."
Don said, "My kind of fun. Tell me more."
Doctor Pettigrew said, "Actually, they numb you in one groin, and then
thread a little rubber tube about the size of a ballpoint pen filler into the
artery. There's no feeling inside the artery, so you don't have any discomfort
except from the table. The table is hard -- much cushioning blurs the xrays.
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Nitro
"They thread this thing into your heart's arteries, and then inject some
watery stuff that's opaque to xrays. While this is being injected, they take
xray movies of it flowing through your heart.
"They look at the pictures to see if there are any cholesterol goobers
plugging up your arteries. If there are, and they can reach them, they take
another catheter with a balloon and blow it up inside the artery to scrunch the
cholesterol into the wall of the artery to get it out of the way.
"It's possible that doing this heart cath could provoke the heart attack
you're about to have. It's possible that nothing can be done. I just hate to
have you pass this up without understanding clearly what we're dealing with."
Don thought about this for a long time, and talked to Vi about it. She was
pragmatic as usual. She just said, "I'd like you to feel better, but I know
there's risk. I'm afraid to lose you, but I know it could happen whether you
have it done or not. It's your decision. I'll abide by whatever you do."
After awhile he had Vi call doctor Pettigrew and to make the appointment
with a cardiologist, doctor Markham. He made the trip into the peopled
wasteland of the city with their daughter Karen piloting and navigating the car.
To Don and Vi, the city was a confusing wilderness, too many streets and roads,
all going to every place except their destination.
. . .
Doctor Markham was one of many cardiologists in a huge medical center. He
was studiously polite and neatly groomed. Back home not all of the doctors wore
ties; here the doctors wore dark suits and white shirts, and in the exam rooms
they wore white coats.
They had made quite an excursion to get to his exam room. First there was
the long walk from the parking ramp, and the mystery of which entrance was the
best. People in suits or white coats hurried along, around corners and through
modest doorways; people in ordinary clothing walked more slowly, some painfully
so, mostly in couples, toward and through a grand entrance with revolving doors
and a big lobby. For Don, this was a two-nitro journey.
Then they had to find out where to register, where they sat and filled out
forms and showed their insurance and medicare cards for a pleasant, businesslike
young woman, who then gave them directions for the next leg of their
exploration. This was to the laboratory, where Don had tubes of blood drawn.
Vi said, "But he just had blood work at home two weeks ago."
The technician said, "We have to draw a complete panel on all new cardiac
patients. When did he last eat?"
Don said, "Last night." He meant his last meal, but he'd been famished on
the trip up and had eaten a roll in the car.
Small dishonesty bothered Vi and she worried about making the tests
inaccurate: she knew that some blood tests had to be done fasting, so she said,
"Well, he did have a roll this morning."
Faint disapproval flashed across the technician's face and was gone. "I'll
make a note of it. We'll run the blood, but your doctor may want some of the
tests re-drawn."
Having escaped the frustration of not having the blood work drawn, the
three of them embarked on the next leg of the journey, down corridors and around
corners to another office, where they waited a few minutes for Don to be called
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Nitro
to have a chest xray. Karen and Vi talked and looked at the old magazines while
they waited for him, a television nattering mindlessly in the corner, at which
people glanced occasionally when a new image flashed or when the sound changed.
When that was done, they meandered through more corridors to another
office, where they waited for Don to be called to have an electrocardiogram,
taken in a small room by an extremely efficient technician.
As he put his shirt back on afterward, Vi asked the receptionist, "How will
we find the clinic?"
"Oh, you're already in the clinic," the receptionist said, "Just wait a
minute and I'll give you his cardiogram to take up to the doctor. Turn right
down this hallway to the elevator, go to the fourth floor, and when you get off,
the doctor's waiting room will be just ahead."
There they sat again, a quiet, slightly tense trio, intimidated by the
scale and formality of the place. After a long wait, they were taken into an
exam room, where they waited again. Suddenly doctor Markham was opening the
door, the neatly groomed, dark-suited doctor Markham. He said, "Glad to meet
you, Mr. and Mrs. Kilmer. I have a letter here from doctor Pettigrew about you.
I know him well; he's a fine physician. We're pleased to have his confidence.
I see you found us all right."
He asked Don about how he had been feeling lately, listened to his chest
and checked his pulses; he paged through the chart. They talked about Don's
history, and the possibilities for further treatment. In the end, he agreed
with doctor Pettigrew's recommendation that Don have the catheterization, which
was already scheduled for tomorrow morning. He talked about the potential for
decreased pain and better endurance, the risk of heart attack and death as rare
complications of the procedure, and he described in detail what to expect.
. . .
And so the next morning Don had the heart catheterization. When they
squirted the dye in, his chest felt hot, like he was in an oven, and the
pressure was intense, as bad as last winter when he had tried to shovel snow
when it was below zero. He had nearly fainted after he got into the house and
took a nitro.
The result showed a tight narrowing in one of the main arteries of the
heart, and mild narrowings in two others. Doctor Markham drew Don a picture,
with arrows and numbers with percent signs. It seemed at the time to make
sense, but when he was gone and Don looked at the drawing again, it was a
cartoon. It was hard to imagine what his heart was really like. Doctor Markham
seemed optimistic. One major narrowing and two less serious ones, all where the
angioplasty balloon could reach them.
When he had checked into the hospital, the nurses had taken all his pills
into custody, and doled them out on their schedule. This upset Don a little,
because their schedule was so machine-like and inflexible. It was different
than the one he was used to. At home he could accommodate if he wanted to, but
there was no flexibility here. And here they didn't even keep up their own
schedule accurately. Don figured they just had too many things to do to be
precise. He imagined what he would feel like facing a whole hallway full of
patients all due for pills at one o'clock. Passing out medicine seemed like
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Nitro
make-work to Don. Why can't they let the patients take their own medicine, like
at home, and just check to make sure they did?
He didn't let Vi give the bottle of nitro in her purse to the nurses. But
the nurse warned her, "Don't give him one without checking with us first. You
could do a lot of harm by giving it to him at the wrong time."
This seemed stupid to Don, but he didn't say anything. How could a nitro
hurt him after all these years of being his friend? Why was it good for Vi to
give him one at home when he asked, but dangerous in the hospital?
The next day, he had his angioplasty. He had terrible pressure in his
chest for a few minutes while it was being done. He asked for nitro, and they
gave it to him intravenously. The worst thing about the catheterization was
having to lie still on that cold, hard table for an hour and forty minutes.
Every bony bump on his backside hurt like fire, and were still sore the next
day.
Doctor Markham seemed happy afterward. He told Don and Vi that the main
artery had opened nicely, and the others looked good also. Don would stay
another day and then go home if everything went well.
. . .
Vi got up early the next day. She would rather have waited until visiting
hours began, but she hadn't slept very well, and was awake with the sun. It
wasn't just worrying about Don; hotel beds were just too hard to get used to at
her age. Her back hurt.
Breakfast was bland oatmeal and warm toast in the hospital cafeteria. The
rest of the food looked even less appetizing. Eggs were huddled, frayed and
stiff, in the bottom of a stainless steel warming pan. She could hardly stand
the thought of putting one of them, already speckled with pepper, on a cold
plate. She longed for her kitchen, where she could do proper honor to an egg,
poaching it for exactly 2 minutes and 45 seconds, then slipping it onto a piece
of hot buttered toast, soft, fragrant and delectable. Her mouth watered
thinking about it.
Here she was a stranger who had invaded a giant health factory, where even
the food was mass produced. She ate pasty oatmeal from a white porcelain bowl.
At least it was hot. Its blandness suited her dispirited mood. She ought to
have felt happy, because Don's angioplasty had been successful. But it was hard
to feel happy in this place, full of sad and worried relatives like herself,
redolent of antisepsis, starkly clean.
When she was finished, she bought a paper for Don and slowly navigated
through the maze of halls and elevators to his room. She passed the nursing
station, filled with busy nurses and aides. They looked so young. Grown
children, really. She felt self-conscious. She straightened her stooped back,
touched her hair, and quickened her short steps. No one seemed to notice as she
walked by. A relief, in a way.
Yesterday, when they were working on Don, she had put worry out of her mind
by crocheting and by reading the Bible in his room, especially the Psalms, which
comforted her.
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Nitro
Don was just finishing his orange juice when she came in. She said
quietly, "Good morning, dear." She kissed his cheek gently and handed him the
paper.
She watched while he read through it, as he always did after breakfast,
giving her a running commentary as he spotted items that piqued his interest.
She gazed out the window at the blue north sky and followed the patterns of
sunlight and shadow on the buildings across the street as they talked.
He grunted slightly. She looked back at him.
"Vi, look in your purse and give me a nitro, please?"
Just like home. But they weren't home. The nurse had told him not to take
any medication unless they gave it to him. "You'd better turn on the call
light," she said. "Is it angina?"
"Of course," he said crossly, as he pushed the call button.
She could hear the distant electronic ringing of his bell down the hall in
the nursing station. The little square white light in the panel above his bed
blinked in unison with the distant call bell. While they waited, she mentally
took the bottle of nitro out of her purse and put it under his tongue. She
said, "Don, I can't give you a nitro. I don't know what it will do with the
medicines they're giving you."
In a few minutes the nurse came in. "What can I do for you, Don?" she
asked as she leaned to turn off the call light.
"My chest hurts," he said, "I need a nitro."
She checked his pulse, took his blood pressure, and listened to his chest.
She straightened up and said, "Your vital signs are fine. I'll go see if the
doctor left an order for nitro on your chart."
Don and Vi waited. He was breathing a little faster. "This damned
hospital," he said.
"Don't talk like that, Don, " Vi said quietly.
"It's getting worse. Why can't I just take a nitro?"
"Let's call the nurse again."
He pushed the call button. They waited.
Another nurse came. "Hi, I'm Shirley. Martha is talking to your doctor on
the telephone. Can I help you?"
"I just need a nitro. Why can't I have one?"
"I suppose the doctor hasn't ordered it. I'll go see."
Vi could now see tiny drops of sweat on Don's forehead. She had a lump in
her throat. She felt like running to the nursing station and crying out, "Can't
you just give him a nitro?" She knew exactly where the bottle of nitro was in
her purse, in the bottom of the small zippered pocket. Mentally she picked up
her purse, opened it, fished out the little brown bottle, unscrewed its tiny
cover, tipped out the minuscule white pill, stood up, then reached toward Don as
he opened his mouth and raised his tongue to receive the relief of his pain, a
medical host under his tongue. She sat, quiet and still, in her chair. In her
mind she gave him nitro again and again.
A technician came in with a EKG machine. "Are you Don Kilmer?" He said,
"Yes," but she was already checking his arm band. She said, "I'm Debbie and I'm
going to be doing a cardiogram on you. Have you had one of these before?"
He nodded and asked, "Are you going to give me a nitro?"
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Nitro
She lifted Don's gown and put the six little stickers across his chest and
more on his arms and legs. Debbie plugged the machine in. She said, "The
doctor ordered an EKG. That's all I do."
She ran off a tracing, unhooked Don, and left, saying "I'll take this out
so the doctor can see it."
Vi saw that he was pale and sweaty. He said, "Vi, give me a nitro."
She said, "I can't, Don." She felt paralyzed.
"Vi, if you don't give me a nitro now, you're going to be living alone!"
"Oh, Don! I just can't. You know the nurse told us you can't have any
medicines except what the doctor orders. We don't know what the nitro would do
for you with the other medicines."
"They're not giving me anything but what I take at home. Give me a nitro,
Vi. I can't take this much longer."
She said, "Oh, Don!" and began to weep.
They sat in silence for a few minutes. He turned his call light on again.
She could hear the electronic chime at the nursing station echo down the hall to
his room. She looked out the window at the cold blue sky, at the stark sunlight
slanting across the buildings on the north side of the street. She looked back.
Don was asleep. The room was quiet. Even the green line on the heart monitor
above his bed was quiet and smooth. The call bell chimed monotonously at the
nursing station.
In the distance, a buzzer went off. The nurse named Martha came running
into the room. She shook Don, felt his neck, and leaned over with her ear near
his nose. She grabbed the phone, pushed buttons, and said, "Code blue, room
4432." Then she took a plastic bag from a clip on the wall, took a fist-sized
piece of green plastic out of it, put it over Don's mouth, tipped his head back,
and blew into it several times. Then she climbed onto the bed, and started
leaning rhythmically on his chest.
Vi felt nauseated and faint. Her tears stopped. She sat completely still,
staring.
Nurses, technicians, and a couple of doctors flooded the room, bringing a
big red cart with lots of drawers, carrying on its top two small white boxes
that looked like electronic instruments.
A nurse she hadn't met before knelt beside Vi. "Mrs. Kilmer," she said
quietly, "Why don't you come with me."
As Vi followed her unsteadily, a feeling of horror enveloped her. "What's
happening to Don?"
"I'm Marti, Mrs. Kilmer. Your husband's heart has stopped and the team is
trying to get it started again."
Vi waited in the little lounge for nearly an hour before finally doctor
Markham came in with a long face. "I'm sorry, Mrs. Kilmer," he said. "We
weren't able to bring him back. I'm surprised this happened. Despite his pain,
his cardiogram was unchanged, and the angiogram had been very successful. This
is one of those rare events we talked about yesterday before the procedure. It
just can't be predicted, and I'm sorry it had to happen to Don."
"I don't know what to say," said Vi. "Thank you for trying... I should
call our daughter Karen."
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Nitro
After she was done talking to Karen, the nurses asked for the name and
telephone number of the funeral home. She signed a autopsy form and an organ
donor form. She saw that the nurses had put Don's belongings in a big brown
plastic garbage bag. She carried it down to the parking ramp and put them in
the trunk of the car. She felt weak and very alone.
. . .
There were more than a hundred people at the funeral. Vi managed to hold
up through it all, but she didn't sleep well for months afterward. The little
house in the quiet town was cavernous, full of Don's absence.
Her spirits slowly lifted as time passed. She was able to face her
children and to make a new solo life. But the only person to whom she told the
story of the nitro was doctor Pettigrew, who seemed to understand. He explained
carefully and gently and at great length, that not giving the nitro did not
cause Don to die. Nitro does not open clogged arteries, it just reduces the
heart's work. It might have made his passing easier, but it would not have
prevented his death.
She kept the nitro in its zippered pocket in her purse for a long time. It
wasn't that she wanted to keep it there as a memento, but that she couldn't
stand to touch it to throw it away. Finally, one day while cleaning out her
purse she took it out, dropped it in the garbage, and wept until her eyes were
dry and her sides ached. And afterward she went on with her life.
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9
Chapter 2
Euthanasia
Elaine's shift started out busy. By 7 am she had finished the segue from
Mom to RN, and the second movement, the long movement, of today's symphony was
prestissimo. She had three patients, all of whom had intravenous lines to tend
and several oral medications. IV's and meds, call lights and phone calls,
recording vitals and charting progress notes; the merry-go-round just seemed to
turn faster and faster. One of her patients, Esther, was an elderly lady from
Hazy Rest Home who had a Foley catheter that was uncomfortable.
The inflated balloon at its tip irritated her bladder and made her feel
like she had to pee. Or maybe it was the slight tugs on the tubing that
happened when she moved. Which was continually. Her memory was pretty good for
about twenty minutes, and then she'd press the call bell and ask again to be put
on the commode.
Elaine had just stopped back at the nursing station in mid-morning to check
Esther's med Kardex to see if anything had been ordered for agitation when Sally
Raiman, the shift supervisor, caught her attention.
"Elaine, we've got a new admission. Dr. Pettigrew is admitting Sammy
Ferris again."
"What for?"
"Small bowel obstruction. Again."
"Oh, boy." A pause. "My patient?" Suddenly the day seemed overwhelming.
She'd be getting off late again, and there was nothing for supper yet, and her
daughter Hillary had a school band concert at 7:30. Oh, well, there was always
spaghetti...
"Yes. I'll help you get Esther settled while you admit him."
Elaine remembered vividly Sammy and his mother from his last hospital stay.
He was a sixteen year old boy who was profoundly retarded from cerebral palsy.
He was as simple as an eighteen month old child. He could say a few words:
"home," "sleep," "Mom," "no," not always distinctly enough to understand. But
his mom, Gail Ferris, always seemed to discern words, sometimes when the nurses
were sure she was imagining them.
When Elaine had called a nurse at the county home last month about a
missing shirt, the nurse had said, "When he's feeling good, he is so sweet and
loving. He hugs and kisses his mom when she comes, and he cries and screams
when she leaves. We didn't think he could do it, but somehow he learned to
recognize the sound of her car, and he starts to scream and cry whenever she
10
Good Death Euthanasia
drives into the parking lot. Otherwise he is sweet and cooperative with us. He
likes giving the aides and nurses hugs and kisses. But when he's upset or sick
you probably won't see that side of him."
To some of the nurses, Gail seemed intense, somewhat distant, slow to trust
and quick to criticize. After getting to know her during his last hospital
stay, Elaine had decided that she wasn't mean-spirited, but was just totally
focused on Sammy's needs. She had told Elaine a tough story.
. . .
Last month Elaine had not been so overwhelmed when Sammy was admitted.
After she'd finished with his admission forms and orders, and gone to his room
to check his IV site and infusion rate, there had been a woman with him. She
wore a green business suit, was trim and a hint of crows-feet suggested she was
in her late thirties. She sat in a chair she'd pulled up to his bedside and was
holding one of his hands with her left and stroking his tummy with her right.
She looked up at Elaine as she entered the room, but did not speak at first.
"Hello," said Elaine, "Are you Sammy's Mom? I'm Elaine, his nurse this
shift."
"Yes," she said, "I'm Gail. I was able to leave work a bit early today.
How is he doing?"
"Oh, he's doing all right," Gail said. "Doctor Pettigrew has him on
nasogastric suction for his cramping and nausea and we're giving him some
intravenous fluids. I was just going to check him."
"He seems pretty bloated," said Gail. "It seems to be painful for him."
"Is this bloating unusual?" asked Elaine.
"Well he usually has some, but, yes, this is much more than two days ago
when I saw him last. And he was calm and comfortable then, and just look at him
now."
Elaine hadn't noticed much, to tell the truth. He just seemed slightly
restless and once in awhile would moan a little. "Is this a lot different from
usual?" she asked.
"Oh, yes, when he's comfortable, he likes to play and talk," Gail said.
"Could you give him something for pain?"
"I just did a couple of hours ago, and he'll be due for another dose in
half an hour or 45 minutes if he needs one," Elaine said. "Can you help me to
understand his history?" she asked. "Was he injured at birth?"
"Yes, I think so. Sammy had a hard birth. It wasn't a long labor, but
some things went wrong during the delivery. I don't understand exactly what all
happened, but he was badly stressed, and the cord was around his neck. Everyone
was afraid he might have been damaged, and he was." Gail stroked his arm, her
eyes a little moist.
"Were you able to take him home?" asked Elaine.
"Oh, yes. He was just a normal baby in many ways. But he stayed a baby
even though he grew. You don't realize just how wrong things are until you
visit someone else who has a child that's quite a bit younger, and your own
child seems half as far along. Sammy just didn't develop much. In some ways it
11
Good Death Euthanasia
was nice. He was really a sweet baby, and he's still a sweet baby sixteen years
later."
Elaine jotted brief notes as Gail talked. The canned voice from the
ceiling in the hallway paged staff intermittently. Elaine asked, "When did you
have to find a place for him?"
"I had to put Sammy in the county home when he was nine. I hated to do it;
you feel like such a failure as a mother. But he just got harder and harder to
take care of as he grew big. Besides, I have two other children. One is older,
one is younger. They need a mom, too. They helped me a lot, but they were just
children and some days it all was just too much.
"I was beginning to wonder how much longer I could keep it up, and then my
husband, Sammy's dad, bailed out. That's another story. I guess in some ways
it was a blessing, because it made me face up to making a change. I had to go
to work full time. But before I could even look for work, I had to put Sammy in
the county home.
Outside the window of the hospital room sparse snowflakes drifted lazily
down, fluttering lightly through the still late-autumn air onto the dull green,
frozen grass. The two women were quiet for a moment, pondering; then Elaine
said, "That must have been a big financial strain for you."
"The good part, if there was one -- about Keith leaving me," said Gail, "Is
that we didn't have any money, so Sammy was eligible for medical assistance, and
the county took over his care.
"While we were getting him into the home, things were pretty tight
financially for us. Eventually I got a decent job as an accounting assistant,
so at least I had a day job with enough pay to take care of the bills.
"Putting Sammy in the home didn't rescue our marriage, so now I was taking
care of two kids by myself and my little Sammy out at the home. I did office
work all day and had to take care of the other kids each evening, so I could
only visit Sammy at the home for a little while after supper, or on the way
home, and on weekends.
"Didn't you live somewhere else then?" asked Elaine.
"We lived in Iowa then. Three years ago, I lost that job in a budget cut.
I found a job close to my family, in Wisconsin. But now I was three hundred
miles away from Sammy. It took me two years to transfer Sammy to the county
home here because the Iowa county refused to let him go. I don't know why; I
don't like to think that it might be just that the place in Iowa wanted the
income from his care.
"I had no idea that they could just keep him," said Elaine.
"Neither did I," said Gail. "I was about at my wits' end. I asked over
and over to have him transferred. It seemed as if no one had authority to do
it. I didn't know what more to do to be near my sweet boy. But one day I went
to visit our county nursing home here, just to see what the facility was like.
When I was there I got a tour by a tall man who seemed to run the place. He
seemed interested in my frustrations with the Iowa home. So I told him, and I
told him I hoped that someday Sammy could be here near me. After I had told
him, he asked, 'Who is Sammy's guardian?'
"'I am.'
12
Good Death Euthanasia
"'Then the home in Iowa has to follow your directives. If you want him
transferred, we can have him here in thirty days.'
"I was so stunned that I forgot to cry. But I cried when Sammy came from
Iowa. It had been almost two years, seeing him only four or five times a year,
when I could afford trips back, or when he was sick. Now I can see him almost
every day again."
Sammy was a tiny lad, only about four feet tall. Elaine wondered if this
was from malnutrition. She asked Gail, "Has he always had trouble with his
stomach?"
"He hasn't been able to eat well for years," Gail replied. "He's had
trouble with stomach cramps ever since a bad spell about ten years ago. They
gave him some corn to eat. The next day he got a bowel obstruction, and I blame
the corn for that. He had surgery for it, and he's never been the same again.
After that, he had a really small appetite, and he'd often cry out. I'm sure he
had a lot of colicky stomach pain. He's needed surgery for bowel obstruction
every couple of years. Each time it's taken longer for him to get out of the
hospital, and each time afterward he's had more trouble eating. During the last
year or two he's had bouts of vomiting sometimes."
"Has he gotten intravenous feedings?" asked Elaine.
"About a month before I finally got him transferred to Wisconsin," Gail
said, "He had another abdominal surgery. This was harder than any of the ones
before. He couldn't eat for weeks afterward, and he had to be fed with
'hyperalimentation.' That meant the doctors put an IV line into the vein under
his collarbone. Then his hands were tied to keep him from pulling the IV out.
He vomited soon after surgery, and aspirated it. This led to a severe
pneumonia, and they had to put him on a respirator. Then they couldn't get him
off the respirator, and so they put a tube into his windpipe in his neck just
above his breastbone -- a tracheostomy. The doctors there told me that it was
permanent, that he would never be without it."
"I could only see him on weekends," Gail added, "Except for a few days at
first when I still had some sick leave. Of course his regular doctors were
usually off duty then, and I ended up talking to the ones covering. The rest of
the time I had to keep up by phone. You can hardly get a doctor to return a
call, and the nurses can't tell you what the doctors are thinking. It wasn't
very satisfying. Actually, it was pretty frustrating. And when Sammy was
finally ready to come to Wisconsin, he was hardly well at all."
"So it's been pretty much downhill since then, I suppose," Elaine said.
"Not entirely," Gail said. "Since he's come to our county home here, it
seems like less has been done, but more care has been taken. Does this make
sense to you?"
"I don't know," Elaine answered, "explain what you mean."
"Well, they've done less. There haven't been so many doctor-things done to
him. He doesn't get antibiotics so often. And he hasn't had surgery, thank
God."
"But the staff has paid attention to the little things, things that ease
him, and hug him and let him kiss, and play baby games with him. I've noticed
how hard they've worked to get him to eat, and how patient they are. He's eaten
a little more, and I think he's stronger."
13
Good Death Euthanasia
"I've noticed that the tracheostomy scar on his neck seems fresh," said
Elaine, "when did he have it removed?"
"After he'd been here about three or four months, the doctor making rounds
said, 'I don't think he needs this tracheostomy anymore,' and took the tube out.
I was scared about what would happen, but the hole in his neck slowly healed
shut, and his breathing was fine. The best part about that was that he didn't
need to have that suction catheter stuck down his windpipe any more. That made
him cough and cry. And his neck was cleaner. Crusts of phlegm would build and
crust around the tracheostomy, and after the hole in his neck healed, his neck
stayed clean."
"How did he do mentally through all this?" Elaine asked.
"Oh, he lost a lot," Gail said. "Before that last surgery, I could make
him smile, and he would respond to me and he would play like a big baby. He
could eat regular food, and he sometimes tried to feed himself. Afterward he
did less. And he responded less to me. And his stomach has always been bloated
since, and sometimes it is so noisy. When it's noisy, he seems colicky, and
sometimes I can see slow waves going across the skin of his belly. It's hard to
see him suffer like that."
"I'm sure it is," said Elaine.
. . .
After doctor Pettigrew had evaluated Sammy during last month's hospital
stay, he had explained to Gail, "From Sammy's previous surgeries, a great deal
of inflammation occurred. Whenever surgery is done in the abdomen, there is a
certain amount of bleeding, and blood creates inflammation. If there's any
infection, that creates inflammation also. Unfortunately, inflammation brings
in the cells that create scar tissue, which in the abdomen forms filmy bands of
scar tissue in the space between the loops of intestine. These loops of
intestine are normally slippery and well lubricated, but can get trapped in
these bands, called 'adhesions.' Sometimes a knuckle of bowel will get trapped
between bands, kinking and causing obstruction. Sometimes the blood supply to a
loop will be constricted or cut off. If it's constricted, Sammy gets bloating
and cramping. If the bowel is obstructed, then he vomits. He might vomit for
other reasons, too, but the vomiting he's having right now is from obstruction."
"Yes, that's pretty much the way they explained it in Iowa," said Gail.
"Will you have to do surgery again?"
"I hope not. To treat this we'll first simply put the bowel at rest. To
give Sammy the fluid he needs, we'll use IV's. He makes saliva no matter what's
happening in his belly, and his stomach and liver and pancreas all secrete fluid
amounting to several pints a day. If his intestines are blocked, then all this
fluid backs up, and he vomits. The danger of vomiting is that it might go into
his lungs. This could cause pneumonia like he had during his last episode in
Iowa. And the intestines keep struggling to push the fluid along properly.
This causes lots of cramps."
"Does this mean you have to put a tube in his stomach again?" asked Gail.
"I think that's awfully uncomfortable for him, and the nurses have to tie his
hands to keep him from pulling it out. He hates that."
14
Good Death Euthanasia
"I know. But we probably should. If we slide a tube into his stomach and
suck out all the fluid, then he'll not have such cramps, he won't vomit, and
he's not as likely to get pneumonia. And this lets the bowel rest, so it might
relax and slip back out of the constricting band. This would relieve the
obstruction."
"How long do we have to keep the tube in?" asked Gail.
"If the obstruction doesn't open up in two or three days, we should
probably consider surgery again. I know that they did this more than once in
Iowa. Those constricting bands of scar tissue can be snipped away after a
surgeon opens the abdomen. It's tedious and meticulous work to snip away all
those adhesions to release the bowel, so the surgery can take quite awhile.
Sometimes the blood supply to part of the bowel is cut off by the adhesions or
by the swelling, and then it might be necessary to remove a portion of bowel."
"Oh, I hope we don't have to put him through surgery again," Gail said, "he
went through so much trouble afterward last year in Iowa."
Dr. Pettigrew was not usually very communicative with staff, and later
during that hospital stay, when Sammy had been slow to respond to the NG
suction, Elaine had asked, "Are you thinking about surgery?"
"No."
"What happens if he doesn't open up?"
"I just hope Mom is willing to let go. I have my doubts. You know what he
was put through in Iowa. I sure hope she doesn't make us do that to him again."
"Well, I guess it's her decision."
"Not entirely. She can't make us do the impossible; I don't think he'd
survive another surgery. I don't like the idea of making him suffer just so Mom
won't feel guilty."
"Maybe it won't be in our hands."
"Hope not. But I take care of him out at the home, too."
During that hospital stay, he had been on NG suction and IV's for almost a
week, and then became able to eat again and went back to the home. Gail was
greatly relieved not to see him have surgery, because of the nightmare
hospitalization back in Iowa. He went back to the home, but doctor Pettigrew
had said it was probably only a matter of time until it happened again.
. . .
Now, just a month later, Sammy was coming back. Another admission, another
stressed-out family. Elaine felt tired. She took a deep breath and called
Esther's doctor. "Dr. Raphael, Esther Stevens in 202B is having trouble with
her catheter..."
Sammy arrived on a stretcher about an hour and a half later. He was small
and light of frame. His muscles had evaporated during years of bedrest; his
limbs had become delicate and wasted; years of chronic partial bowel obstruction
had made his belly distended, and now it was tight and bloated. He was sweaty,
he squirmed continually. He cried out, and thrashed; his breathing was rapid
and deep. The skin over his belly moved slowly, continually, as if within it
were a knot of squirming sleepy serpents. He flinched and moaned when Elaine
touched his stomach.
15
Good Death Euthanasia
Elaine was relieved to discover that he didn't have complicated orders. He
seemed preoccupied, and didn't respond very much to her. His belly seemed tight
and uncomfortable. Every little while it would make gurgling sounds, and he
cried and whimpered. She tucked him in as comfortably as she could, and took
his vitals, and checked his orders with the ward secretary. She filled out his
database from the nursing home records. Gail came early from work, and doctor
Pettigrew came to examine him after he finished clinic.
After Gail came from work, Elaine chatted with her. Gail said, "He's had
more trouble with cramping and vomiting during the last month than before. I've
been afraid this was coming. I don't know how it's going to turn out. He's in
such pain. I wish there were some way to keep him comfortable."
Elaine finished her paperwork, and recorded Sammy's weight and vital signs,
and asked Gail to fill in details about his recent health. She looked at
Sammy's thin arms, wondering where she'd find a vein to start an IV.
Dr. Pettigrew knocked and came in. He looked fatigued. Elaine said,
"Excuse me, I'll get out of your way."
"No, stay," he said. "Mrs. Ferris, do you have any particular questions?"
"Well, what's happening?"
"We're back about where we were last month. You've seen the trouble he's
had since then."
"Yes."
"The xrays show that his intestines are full of air. This air is mostly
produced by bacteria, and is a sign that the contents aren't being moved along.
This is why his abdomen looks large. I'm sure he has cramping, even though he
can't tell us, because he squirms and cries. With a stethoscope I can hear
loud, tinkly sounds in this abdomen. When we look carefully at his abdomen, we
can see intestinal movement through the wall. His vomiting is a sign that he
has intestinal obstruction, and means that we can't feed him. Between saliva
and the secretions of the stomach and upper intestines, a few quarts of fluid
are produced every day, and if the intestines can't pass this along and reabsorb
all of it, we vomit."
"Do we have to put a tube through his nose?"
"Well, when we vomit, we feel nauseated, and a tube relieves the nausea and
usually most of the cramping. If he has any sensation of nausea, we should try
to relieve it."
"But it has to be uncomfortable. Last month he had bloody crusts around
his nostril and it smelled terrible."
"Well, he's only vomited once today. If you'd like, we can simply not feed
him and see if his intestines can handle his own secretions."
"I'd like that. I think he'd be more comfortable."
"OK. Have the nurses call me if you'd like to try a tube. By the way,
there's no sign that this is due to an infection. He's had no fever and his
white count is normal. His urine is concentrated, of course, but the sediment
doesn't look bad microscopically. So I don't think he needs antibiotics."
"Do we have to put in an IV?"
"I think we should. If you feel he's thirsty, this will take care of it
easily, and we can give him pain medication without sticking him."
"OK. ...I hate to see him suffer like this."
16
Good Death Euthanasia
"If this doesn't get better by itself, the only alternatives are either to
do surgery, or put down an NG tube, or to let nature take its course and try to
keep him comfortable. ...I think surgery would be too much for him."
"Yes, I can't bear to think of him going through what he did in Iowa."
Gail's eye's were suddenly moist and red.
"Maybe we should just work hard to keep him comfortable. You can stay with
him as much as you like, and let us know if you notice he needs anything."
"I think you're right. How long do you think it will be?"
"I honestly don't know. He could get better like he did last month. If
this doesn't relent, it will be at least days. It's going to be difficult for
you, no matter what we do."
"It's just so hard to see him suffer. He can't tell us, but I know him and
I can tell when he's hurting."
They were silent for a moment. Elaine needed to leave and get on with her
work taking care of her other patients, but didn't want to break in.
Dr. Pettigrew said, "I'll order morphine for him. If the nurses feel he
has pain, they can give him an injection in the IV, or you can ask them to.
"Thanks. That would be nice."
. . .
The next day when Gail came in to see Sammy, he was squirming restlessly,
and crying out every few minutes. He wept and screamed and cried, "Mom! Mom!"
when she came in, and put his arms around her for only a moment, then thrashed
back onto the bed.
She rang for the nurse. After long minutes, a grey-haired woman came in.
"Can I help you?"
"Could you please give Sammy some pain medication? He's really suffering."
"Oh, he's just having a tantrum. It'll pass. He's often quiet."
"His pain comes and goes."
"I've assessed him, and I can tell he's not having any real pain."
"Well, I'm his mother, and I know when he's hurting."
"I'll check him again in a few minutes. I've got some meds to pass right
now."
And she slipped off down the hall. Sammy did quiet some while Gail talked,
and soothed, and stroked his arms and his tummy. After about 45 minutes, he got
restless, and then began screaming again. Gail turned on the call light again.
The same nurse returned. Gail took a careful look at her name tag. It
said, "Helen, R.N." Gail said, "He's having terrible pain again. Couldn't you
give him something for it?"
"Mrs. Ferris, Sammy is dying. You need to let him die with dignity.
Giving morphine takes away his dignity."
"Helen, he's in terrible pain. I've seen him when he's comfortable, and
I've seen him in pain, and he's having pain. Please give him some morphine."
"How did you know my name? Oh;" she chuckled; "that's right, my name tag.
I don't like the doses Dr. Pettigrew ordered. They're pretty heavy, and that
could kill him. I don't want to be responsible for that."
"I know he's going to die, and the least we can do is let him go
comfortably."
"I'm responsible for him on this shift, and I'm going to do what's right."
17
Good Death Euthanasia
Gail looked down to hide her tears, and stroked Sammy gently until he
quieted again.
She had an early lunch in the cafeteria. She sat next to a pleasant young
woman. "Hi. I'm Sharon. I'm here waiting for my husband to get out of
surgery. Do you have someone here, too?"
"Yes. My little boy Sammy."
"I'm sorry. Is he having surgery?"
"No. He's too sick for surgery."
"Oh, no! That must be awfully hard on you."
"Twice as hard as it would be if the nurse would give him pain medication."
"The nurse isn't giving him pain medication? You don't have to put with
that! Go ask for the shift supervisor or the head nurse, and ask for a
different nurse."
"Can I do that?"
"You sure can! Want me to go with you?"
"That would be nice."
Elaine found herself taking care of Sammy for the rest of the shift. She
gave pain medication to Sammy when Gail asked for it, and apologized to Gail,
"Helen's from the old school. I'm sorry."
Later, when she was checking Sammy's vitals, she realized that Gail had
been Sammy's only visitor. She said to her, "Do you have family?"
"Yes, my mother and a brother and sister. I had another sister, but she
passed away."
"I'm sorry. Do they live far away?"
"No, the reason I moved back from Iowa three years ago was to be close to
my family. Mom's about thirty miles west from here, and my brother's about
twenty five miles east. My sister is on the other side of the state."
"I haven't seen them. Have they been unable to visit?"
"I didn't think so. My brother might come this weekend, when he's got some
time off. But my mother says she's just too busy."
"She isn't retired?"
"Oh, she is. And she is busy, but she finds time to do everything she
really wants to do."
"I'm sorry. It would be nice to have her support at a time like this."
"It would. I'm missing work, and running out of sick days. It would be
nice for Sammy just to have his gramma here some of the time. I don't
understand. When my sister was dying of cancer eight years ago, I took two
weeks off work and came home from Iowa and helped mom nurse her. It's like that
didn't mean anything."
"Your sister must have been very young. That must have been very hard for
all of you."
"Yes, it was. She had just started college, and she got this rare tumor; a
sarcoma, I think it was called, in her pelvis, and she was gone in just about
six months. Mom and dad were just beside themselves. Dad really lost a lot of
spunk after that, and started smoking pretty heavily. He died of a heart attack
six years later, and I'm not sure he cared."
"Your mom has lost a lot, hasn't she?"
18
Good Death Euthanasia
"Yes, she has. I still wish she were here. It's so much easier to bear
these things with someone else."
"Maybe the memories are just too much."
"Maybe."
. . .
The next morning Gail came very early to the hospital, so that she would be
with Sammy when Dr. Pettigrew came by on rounds. When he came in and asked how
it was going she said, "I'm having trouble getting the nurses to give pain
shots."
"Oh, really;" he said, "that's too bad. I'm not sure what I can do about
that." He paused, then turned and examined Sammy. When he finished, he
straightened up and said, "You know, we have a pain control technique that we
sometimes use after surgery, called PCA, for 'patient-controlled analgesia.' We
hang an IV bag with morphine or demerol, hooked to an electronic pump. The
patient just pushes a button to get an intravenous injection of pain medication.
We could set that up for Sammy, and you could take charge of the button for
him."
Gail said, "That would really be nice."
"There's a maximum dose available, and doses have to be given at least so
many minutes apart. The machine keeps track of the doses, so you don't have to.
It just doesn't deliver a dose if it's too soon after the last one. I can order
the intervals and amounts so that he gets enough and can't get too much. There
will be a little white button on a cord that you push when he has pain. The
nurse will show you how it works, but it's really very simple."
Dr. Pettigrew went and wrote the orders, and when she had time, Elaine
started the IV. It was hard: he had little, skinny arms into which had gone
many previous IV's. His skin was curiously stiff and dry, and it was hard to
feel the veins underneath. She got one on the third try, sweating a little
under Gail's critical gaze. Gail said nothing, just stroked Sammy's forehead
and hair, and wept quietly. "This has been an awfully tough time for him,
hasn't it?" said Elaine.
"Yes, I don't know why God allows things like this." Gail said, "A child is
such an innocent victim."
"Yes, you're right," said Elaine. "I lost a daughter right after birth.
She wasn't right. I always regretted that she didn't live long enough at least
for me to get to know her, until I saw what you've been going through."
. . .
Elaine was off a day, and when she came back to work, the charge nurse
asked at signouts if she'd take Sammy again.
"Why do you ask?"
"Some of the staff are concerned about the mother giving him morphine.
Helen and Janine both refused to take him yesterday. They feel Dr. Pettigrew
doesn't trust them to know when to give morphine, it's illegal for an unlicensed
person to administer it, and he's letting the mother do the PCA. She's using a
lot of it, too; she gives him a bolus for every little thing. Dr. Pettigrew, as
usual, isn't listening to the staff, he just does exactly what he wants to. Gail
hasn't left Sammy's room since he gave her the PCA. We've not put any other
19
Good Death Euthanasia
patients in that room, and we're letting her use the other patient bed to sleep
in."
"How is Sammy doing?"
"He looks the same to me as he always has."
"How's he doing orally?"
"Well, he hasn't vomited, but he hasn't taken anything orally, either. Dr.
Pettigrew has the IV rate at about 10 cc's per hour, just enough to keep the
drip running. He hasn't ordered any lab work. That's got some of the staff
upset, too. They think he's trying to put Sammy to death."
"Sure, I'll take Sammy."
Gail Ferris, she could, see, was exhausted. Gail told Elaine, "You've been
so kind. I'm so grateful you're here today."
"Thanks. Are you getting any sleep?"
"I doze, but every little noise he makes wakes me up. I'll be OK. This
won't last forever, and then I'll rest."
"Do you have enough mouth swabs?"
"Yes, but I'll need more by the end of the shift."
Elaine took Sammy's blood pressure and other vital signs, and went back to
the nursing station to check the Kardex to see which meds were next for her
other patients. She saw the pharmacist approach Dr. Pettigrew, and overheard
him say, "Bob, I'd like to talk to you about Sammy Ferris."
"Sure. About what?"
"His morphine."
"What about it?"
"I don't think it's right to put PCA in the hands of anyone other than the
patient."
"He can't do it for himself."
"But his mother isn't trained."
"No one can read him better than his own mother."
"But she might give too much. And she's not licensed."
"You know yourself there's a lockout interval and a maximum bolus."
"He's getting a lot of morphine."
"He has a lot of pain."
"How do you know?"
"I don't know, but with his pathology he surely ought to be in agony, and I
trust his mother's judgment."
"But she doesn't know what she's doing."
"She does know what she's doing. She's giving him relief of pain. And not
one of us; not me, and not you and not any of the nurses, even, has the time to
sit by him constantly and read his reactions."
"She's giving him too much."
"Impossible."
The pharmacist turned red. He was intensely frustrated. He said harshly,
"Doctor, we don't believe in euthanasia at this hospital, do we?"
Now it was Dr. Pettigrew who was angry. He retorted, "Yes, I do believe in
euthanasia, and THIS IS NOT IT! This is allowing a mother to do the only thing
she can to give her dying son comfort! And we're going to keep on doing it!"
They turned away from each other. Elaine went to the rest room and wept.
20
Sammy died the next evening. He had been peaceful for hours. His mother
called Elaine to check him, and then said, "You've been so good to us. If you
could just call Frost's Funeral Home for me, it would be so helpful. I'm going
to go home and get some sleep." Gail's eyes were dry. She said later, to her
older daughter, "I was not about to weep in that place, that den of
professionalism; where I had to stay night and day to protect my son from
correctness." She went home, and made tea, and wrapped up in her comforter and
wept until her heart had begun to mend.
5958 Words ·
21
Chapter 3
The Jensen's Nursing Home Adventure
When Harold fell down Saturday night and cut his head, Frances tied an old
towel around it to slow the bleeding and called the ambulance. It was all just
too much. For years Harold had been getting inexorably stiffer and slower. His
mind still worked pretty well, but it too was slow and stiff. People thought he
was getting senile. Frances didn't know. Maybe he didn't make complete sense
sometimes, but these young people didn't wait for him, either. Butterflies
might think an elephant was dead because it couldn't fly.
At the emergency room, she told the doctor, "I just can't take him home.
He's harder to move than a calf." So after he sewed up his head, he kept Harold
at the hospital. But he didn't exactly admit him. All he had was an old man
with Parkinson's disease who had fallen and cut his head. So he put Harold on
"observation status" overnight and wrote an order to notify his doctor, George
Pettigrew, in the morning. A cut is not a serious illness. Medicare rules
weren't written to accommodate a tired, fragile old woman struggling by herself
to manage a 187 pound piece of human taffy; trying to get him dressed and washed
and fed, tottering under his awkward bulk to the bathroom hoping they would get
there without both falling, hoping she wouldn't be crushed under him between the
porcelain and the wall, no way to reach the phone and him unable to get up.
It was just a month past their 58th anniversary. They were to have been
married on Valentine's Day, but they were two days late because of a blizzard.
He had been almost twenty, she sixteen. Their parents had been doubtful, but
Frances knew she had a good man, and she had been right. Harold had been quiet
and kind, a hard worker, and easy company. They had farmed all their lives.
They got by. They were careful with the land, careful with the animals, careful
with money. They never got rich, but were never deep in debt. Other people had
tried to make their dreams come true; Frances and Harold just lived their life
as it came to them. They had always talked and decided together about things,
but the last ten years or so, Harold had gradually just turned into a sounding
board for Frances, quietly listening and always agreeing. Sometimes his memory
was poor, and as he gradually became more stiff, he simply drifted into his
chair. This had become the hardest part of Frances' life. Old age hides such
difficult surprises.
The emergency-room doctor put Harold on "observation" because he bumped his
head; this had a 24-hour limit, with slight allowance for the inactivity of the
night. Medicare would consider it fraudulent to make him a regular admission
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Good Death Jensens' Adventure
unless he fit their formal criteria; and considered it fraudulent to keep him
more than 48 hours; these were the rules. There was no way to fix Harold; no
way to make Frances strong and energetic. It was hard to explain these
bureaucratic dilemmas to a deaf old woman, and hard to dash her hopes of some
respite from her burden.
A nurse took Harold in a wheelchair to his hospital room. If you had seen
them, you would not have imagined that this frail-looking old dumpling of a
woman every day leveraged her husband out of bed, protected him from falling
while she dressed him, guided him to the bathroom, helped him clean and dress
afterward, and then got him to the kitchen for breakfast. Or that she got him
to the bathroom two and three times during the night. She was short and stocky,
she looked soft, a little overweight, fatigued, and weak. She walked with her
feet wide apart, her steps short. She seemed not to flex her hips or knees as
she walked, but her torso twisted slightly as she took each step. You would see
the nurse, supple and lithe, pushing Harold in wheelchair, and perhaps you would
wonder how Frances managed, alone, to get him around--without a wheelchair--even
on his better days.
You would perhaps not even notice that she was wearing the uniform of old
women: grey hair, naturally frosted, gathered up in back and cut to be easily
managed, wire-rimmed bifocals, a loose print dress of dark blue, a white cotton
sweater, slightly loose nylon stockings, black oxfords. And perhaps also her
husband would be hardly worth noticing except for the white bandage around his
head. There is nothing especially remarkable about a grizzled, balding man,
somewhat overweight, with a lined and expressionless face, wearing an old brown
and blue plaid wool shirt and thick brown wool pants, sitting in a wheelchair as
it is trundled down a hospital corridor.
You might have noticed the nurse, making chipper sympathetic small talk to
them as she ambled along behind the wheelchair. You would have noticed that she
was wearing faded turquoise scrubs and a bright print top, and that she might
have gained a few more pounds than she planned after buying them, or had failed
to lose the weight she dreamed of losing. Like nearly all the nurses in the
world, she had very practical hair and bright, alert eyes and was eternally
fixed in early middle age. You might not have noticed that she was kind,
because you would have expected this.
. . .
The next morning Harold's regular doctor, George Pettigrew, came in. He
was just another one of those soft caucasian males that doctors seem to evolve
into, this one with thinning light hair and an ill-chosen tie. He seemed
chronically hurried, or perhaps he was just always on the verge of going on to
his next task whether there was a hurry or not. He said, "Good morning,
Jensens! I'm sorry to see you had to come in. What do we need? How does that
head feel?" He spoke very loudly because he knew that Frances was rather deaf.
Frances said, "I just can't take care of him any more. He's just going to
have to go to the nursing home." Dr. George knew that these old farmers didn't
have much money, and he was pretty sure that Frances hadn't been able to do
anything to keep Harold's muscles strong and flexible--she was an old woman, not
a physical therapist. He knew that he hadn't seen Harold often enough to really
fine-tune the medications he took, for Parkinson's disease and the rest. And it
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Good Death Jensens' Adventure
was obvious that Frances could really use a rest. He went to the social worker
and explained the dilemma. "Can you think of any way to get him in as a regular
admission? Then at least Medicare will cover rehab if there's hope of progress
in the nursing home."
"Well, yes, we can admit someone who is newly non-ambulatory for
evaluation."
So he went back to the Jensens and asked, "Frances, has Harold been walking
at home?"
"Yes," she said, "he's done pretty well with his walker until he fell last
night."
Maybe that was his opening. In examining Harold, he stood in front of him,
held out both hands, and said, "Harold, let's get up out of this chair and take
a walk."
His nurse, busy near the sink, said, "Doctor, two of us could hardly get
him into that chair."
Harold took George's hands. George leaned back; Harold straightened his
legs and stiffened. He rose slightly, his feet too far forward under him. The
two men held hands, leaning back from each other, Dr. George moving slightly,
encouraging, until it was obvious that Harold was not going to stand up. He
shouted to Frances, "You can get him up?"
"I could yesterday."
Dr. Pettigrew paged the neurologist on call. He explained that he had
Harold Jensen, a slightly demented old farmer with Parkinson's disease who had
become unable to walk after a fall at home, who he was admitting for evaluation
and possible nursing home placement, and for whom he'd like consultation.
Frances relaxed. The neurologist took over the case.
. . .
About three weeks later, Dr. Pettigrew got a fax from the nursing home.
"Harold Jensen agitated and violent," it said. "Request sedative."
An hour or so later, between patients, 45 minutes behind in his appointment
schedule, he called the home. A receptionist answered, "Autumn Rest."
"This is doctor Pettigrew."
"Just a moment." Music on hold....
"Nurse speaking."
"This is doctor Pettigrew."
"Just a moment." Long moment...more music....
"Head nurse speaking."
"This is doctor Pettigrew. What seems to be happening with Harold?"
"He's been agitated this week. We need a sedative."
"Tell me more. What do you mean by 'agitated'?"
"He's been angry, striking out. Staff are becoming afraid of him."
This was unusual. George couldn't remember Frances ever complaining of
Harold being uncooperative; just stiff. He didn't like using tranquilizers
needlessly. He said, "Give him 200 milligrams of carbamazepine twice daily."
That should calm him a little and take the edge off his anger without zonking
him out.
"But that's an anticonvulsant."
"It works for agitation, too."
24
Good Death Jensens' Adventure
"But we're afraid of him."
"It'll work. Just give it to him."
Three days later, there was a message about Harold again. "Call Theresa at
Autumn Rest," it said. He let it age while he saw a couple more appointments,
then called.
"Doctor, Mr. Jensen is scheduled to see you in the office this afternoon.
Mrs. Jensen is threatening to take him home. He's been better, but he's still
agitated. He struck others twice this week. We don't think she can handle him.
Yesterday she said she wants to have some estate left for their daughter. Our
social worker doesn't think that's an appropriate reason to take him out of
here. "
"Who is his guardian?"
"His wife Frances."
"So what are you asking?"
"Our social worker thinks the wife isn't a suitable guardian and wants to
get a court-ordered protective placement and temporary guardian."
"I can't support that. Frances has always exercised good judgment
regarding his care and has done a wonderful job taking care of him. No court is
going to take guardianship away from a wife because she made a sarcastic remark,
and I'm not going to waste my time supporting it."
"Well, they're going to see you this afternoon in clinic."
"I'll talk to Frances."
"Thank you."
That afternoon, Harold and Frances came, their neighbor Helen pushing him
down the hallway in his new wheelchair and standing by in the exam room. Dr.
Pettigrew joined this little committee. "I'm taking him home," Frances said.
She had written out an agenda, a list of questions and concerns she wanted to
cover. It pretty much covered the important points. "Would you prescribe a
portable toilet seat?" "Why did the neurologist stop his Sinemet? I think he's
worse without it." "I want to take him home tomorrow. Can you order a public
health nurse so I can get help with his bath once a week?" And so on. Good
questions.
Harold sat mute and alert, watching Dr. Pettigrew bray at deaf Frances
while she struggled to understand. By approximations, they had a conversation.
He asked her to keep on using the carbamazepine for awhile and decrease it if
Harold wasn't agitated after he went home. He couldn't tell if the neurologist
meant to stop the Sinemet, as there was no discharge summary and the neurologist
hadn't bothered to talk to him at all about Harold. Finally he said to Frances,
"The nurses at the home are concerned that you want to take Harold home. They
think it's not safe with him so agitated."
"The reason he's upset is that they tie him in that chair 12 hours a day.
You'd be upset too. He doesn't need to be tied up at home. If I get him home
he'll calm down. I just need some help."
There was a knock on the exam-room door. Dr. Pettigrew's nurse stuck her
head in and handed him a telephone message. She said, "They forgot to bring the
papers from the nursing home." The message slip said, "Call Theresa with
orders." He crumpled it up and threw it in the wastebasket.
25
Good Death Jensens' Adventure
He turned back to Frances. "The nursing home staff want to replace you as
guardian because they think you want to save an inheritance for your daughter."
"They just want our money. We can't afford eighty six dollars a day. And
what do we get for it? The food is good, and they take care of him and keep him
clean. But it just makes him upset to be tied up like that. His mind isn't so
bad. If they would untie him, he'd calm down.
"And I'm more tired now, chasing up to that nursing home every day and
trying to reason with those nurses, than I was when he was home."
"They just don't want to give back that 846 dollars for the rest of the
month. I had to pay all that money up front and if he goes before the month is
up they have to give some back. I want to take him home tomorrow."
Dr. Pettigrew picked up his telephone and called the county nurse's office
to speak to a nurse. She offered to come tomorrow, even though it was Saturday,
to make an assessment, and to tell Frances what little Medicare would cover and
how much their various services would cost. He sketched the clinical situation
and gave her the necessary orders for medications and a nursing assessment.
Then he turned back to the Jensens.
He drew up close to Frances so she could hear better. He shouted, "It's
all set up. The county nurse will come tomorrow to help figure out what they
can do for you and to help you choose what you can afford.
"The nursing home is not a prison. You can take Harold home any time you
want to. It's just better to go through the hoops and get the paperwork done.
Tomorrow is fine. I'd like to see Harold next week, after he's had the new
Sinemet dose for a few days, to see if it's helping."
He picked up a prescription pad, filled in Harold's name and the date, and
wrote, "Dismiss tomorrow. Continue current medications. Dispense current
supply to Mrs. Jensen." He signed his name and handed it to Frances. "Here are
my orders. Give this to the nurses at the home."
"See you next week, Frances. Let me know how it goes for you."
"Thank you, doctor," she said. And the Select Committee on Harold Jensen's
Health Care herded themselves back down the hall.
. . .
Frances gave the note to Theresa when they got back to Autumn Rest. She
saw Theresa scowl, saw her lips move, heard a murmur of noise in her hearing
aid. She decided to let her hearing aid get in the way. "I'm sorry, I can't
hear you very well. My hearing aid isn't working today. I guess I'll have to
get a new one." Theresa blushed.
Frances said, "I need to talk to you in your office." It was a long walk
down the hall, a slow trip for Frances; and slower for Theresa, who was used to
rushing about, and who was expecting a difficult conversation. When they got
there, Theresa closed the door, sat down behind her desk, and motioned Frances
to a chair.
"I'm taking Harold home tomorrow. I want his things ready by one o'clock.
I think I can be here by then."
"Mrs. Jensen, we have some concerns about you taking him home."
"I'm sorry, my hearing aid just isn't working well."
Theresa shouted, "WE DON'T THINK YOU CAN TAKE CARE OF HIM."
"Well, I won't tie him up all day."
26
Good Death Jensens' Adventure
"WE'RE WORRIED ABOUT HIM FALLING."
"The doctor told me that you want to take me to court, and find another
guardian so you can keep him."
"I DON'T KNOW WHERE HE GOT THAT IDEA."
"He said you talked to him."
"YOU MUST HAVE MISUNDERSTOOD HIM."
"I don't think so. Anyway, I'm coming to pick him up tomorrow, and I want
all his things. And his medicines; we've paid a lot of money for the medicine
that's making him sleepy. And you owe me a refund for the rest of the month."
"I'M SORRY YOU AREN'T HAPPY WITH US, MRS. JENSEN."
"Not half as sorry as I am, believe me."
Frances stayed to feed Harold his supper. The aides had just too many
people to feed, to take the time Harold needed or to feed him sensitively; after
all, how could you expect someone who worked with four people eight hours a day,
five days a week, to understand just how he needed to take his toast? Frances
had had a lifetime to learn how to handle him, and she truly cared about him. A
wage keeps a person around for eight hours, but it doesn't guarantee personal
interest...
. . .
The next day she drove back to the home after lunch. The staff had put
together Harold's clothes and packed up the pictures she had brought for his
dresser. She signed forms. She unplugged his clock, and picked up his shaver,
and took everything out to the car in three trips. Then she went to the nurses'
station. "I'm ready to take Harold," she said.
The nurse on duty pointed up the hall. "THE WHEELCHAIR IS OVER THERE," she
said.
Frances went over, unfolded it, and pushed it to Harold's room. No one
came to help. He was sitting at the edge of his bed. She locked the chair's
brakes and said, "Get in the chair, Harold." She took his hands in hers, and
leaned as he slowly stood. He looked blankly in the general direction of the
chair. His hips and knees were flexed. He was poised to spring, but rooted to
the floor. She said, "Turn, Harold."
He turned. A little, a bit more. Finally he was centered on the chair.
She moved, holding one of his hands, to stand beside the chair. A very slow
waltz, this one. "Sit down, Harold."
He moved a little, then suddenly sat, his hips and knees bending only a
little more. She lifted his feet as she folded down each footrest and placed
his feet on the. She released the locks and wheeled him out of the room, down
the hall. The front door was a little difficult; she backed through and let the
footrest rub against each door to hold it open as she went through the
vestibule. The nurse watched them from the central desk; no one came to help.
When she got to the car, she had a dilemma. She had to tuck the front of
the wheelchair into the open door, so she couldn't stand in front of it to pull
Harold up. She was alone. Since the conversation yesterday with Theresa about
guardianship everyone on staff had been distant and silent.
She locked the chair's wheels and struggled to get Harold up. She cajoled
and pushed, prodded and scolded in the cold wind. Finally she gave up.
27
Good Death Jensens' Adventure
"Harold," she said, "you get in that car. If you don't, I'm going to turn
around and take you back into that nursing home. I'm going to leave you there
and I'm not coming to visit, either."
Harold said nothing. But he'd always been a quiet man. It seemed that he
hadn't heard. Then, slowly, like honey coming off a spoon, he reached forward.
The fingers of his right hand wrapped around the front of the door's armrest.
His left hand pulled on the back edge of the car's seat. His bent hips slowly
rose from the wheelchair. A great object suspended precariously by his
fingertips, he slowly came erect, still bent. He turned his rear slowly toward
the open car, over the seat. He lowered himself a little, toward the seat.
Then, abruptly, he released his grip on the door. His right hip shoved against
the frame of the wheelchair. The back of his head just missed the door frame.
His butt landed on the seat.
Frances unlocked the wheelchair and pulled it away. She pushed and lifted
his legs to help him get his feet in the car, then closed the door.
She took the wheelchair back as far as the vestibule. No point in leaving
it out in the weather, but let them come and get it.
Then she took him home. He hasn't hit her since; hasn't needed any
sedative; he's been cooperative; even speaks a sentence sometimes. He'll be 79
in a couple of weeks. It's been a long marriage, and a pretty complete one.
. . .
Postlude
Frances kept Harold at home for six months, with some help from the county
nurses' staff and some from her neighbors and a lot from her daughter. Harold
never struck her; he was not angry. After that first week at home, Dr.
Pettigrew suggested she stop the carbamazepine and after a couple of weeks of
good behavior without it she threw the rest into the toilet.
Of course, Harold gradually got worse. Soon she couldn't get him to the
clinic, and one day she called Dr. Pettigrew because Harold couldn't sit up.
The ambulance brought him to the hospital, where they found a urinary infection.
She said to the doctor, "I just can't handle him any more. He's got to go to a
nursing home for good." She said this so matter-of-factly, you would never have
guessed what it meant. Defeat; resignation; the knowledge that he might get the
same kind of treatment he had last time; the anticipation of meeting the same
nurses again and having to live under their triumph.
Dr. Pettigrew said, "Well, that's a big decision. I assume you don't want
to go back to Autumn Rest."
"Well, it's closest to our home. It's not far for me to drive."
"I'd rather put him in the Fairview Home here in town. I go to that one
twice a month, and I can keep a close watch on him there. I know it's farther
for you to come, but I'd be more comfortable with him there."
"It's about ten miles farther each way, but I think that would be all
right. I can get rides."
So Harold went to Fairview. His Parkinsonism had progressed greatly since
he'd cut his head: then he'd simply fallen, now he could hardly move, and had
become much more frail.
28
Good Death Jensens' Adventure
Frances visited him nearly every day. She sat and held his hand, and
talked to him even though he hardly answered, and fed him lunch. He always ate
better for her than for the aides.
After he'd been there about two weeks, doing OK, he quietly, abruptly, died
in his sleep.
3835 Words ·
29
Chapter 4
Struggling
Elizabeth Murray awoke in the night with a full bladder, as she did nearly
every night. She carefully arose, a small old woman, a wraith in the dark; slow
and stooped, white-haired, pale and wizened. She was alone in the house where
she'd lived for sixty three years, fifty five years married; in which she'd
raised two families. Everyone had left, as they do in the course of life,
leaving her lonely and bereft. She and her house were dispossessed of
companionship by night. The telephone, her link to her family by day, at night
offered rescue but not companionship.
She slowly walked from her bed to the bathroom by the glow of the lamp she
kept lit in the hallway. The old house's companionably responded to her
progress with continual small creaks and rustlings that she no longer could
hear. She'd long ago forgotten how she sometimes would lie awake at night
frightened by the noises of the house, imagining burglars.
As she let her water down, she felt her nose start to run, and took a scrap
of tissue to wipe it. It was blood. Not again! She went back to her bedroom
and held a tissue to her nose for a long time, waiting for it to stop. This had
happened so many times in the last six months that she'd completely lost count.
This nose of hers had been trouble for years. The occasional, repeated
bleeding had been an annoyance, an inconvenience. Before she realized it was
bleeding, usually her clothes, the sheets, the pillowcase, or the rug were
spoiled with drops of blood, so hard to remove completely. When she would lie
down it ran down her throat and when she sat up it dripped. Afterward there
were annoying crusts in her nostrils that got caught in the nose hairs and
itched and hindered breathing. But she didn't pick them out because that might
just start the bleeding over again.
Lately it would sometimes just keep on bleeding, going on for hours. Clots
formed and her nostrils plugged up, and annoyance gave way to fear. The life of
the flesh, Moses wrote, is in the blood thereof, and deep down we all know this.
This fear had grown familiar to Elizabeth: she'd been to hospital five
times in four months with nosebleeds that wouldn't stop; never mind the dozens
of little ones. She was old and she was sick and she knew that she would
die...but not this way, please God, not alone and in the night in my bathroom
with my skirt hiked up and lying in a pool of blood on the floor.
30
Struggling
She waited an hour, until she was sure it would not stop, until clots had
formed and still more blood ran down her throat, and then she walked to the
telephone and called her son Jim. She let it ring and ring until his wife
Esther's sleepy voice came on, and then said, "My nose is bleeding again. Tell
Jim I need to go to the hospital."
Sometimes they drove all the way to Fairfax, forty five minutes on the
road, where all the specialists practiced, but tonight she just wanted to go to
the local hospital, where some of the nurses knew her, and because they did,
their care was personal and their concern genuine. She was tired of factory
medicine, competent and awkward, a long string of contacts with people who were
kind and polite, but clearly not deeply interested, people with other things to
do.
At the emergency room they drew her blood and cleaned and packed her left
nostril, and admitted her for blood transfusion. Doctor Pettigrew, her own
doctor, would see her tomorrow. Jim made sure she had a private room, and then
went home and made calls to his brother Alan and his sister Susan, who lived in
different towns on the other side of the state, to let them know.
. . .
They each packed quickly, in their separate homes, and drove across the
state in the night. Mom needed them. Without them to check on the medical
staff, to look out for the little things that were so important to Mom's
comfort, who knows what would happen. Jim was just too lackadaisical about
these things, and the doctors' interest in Mom lately had abated mysteriously.
Frustrating.
In the morning, after visiting Elizabeth for a few minutes, Alan walked
slowly down the stark hospital corridor next to his sister Susan. They were a
middle aged couple; they were discomfited. At this moment they had been
troubled by their mother's accidental fecal incontinence and had stepped out of
the room so as not to watch her being cleaned up by the nurses. But they were
troubled also by her chronic illness, her profound weakness, and that her
doctors and their brother Jim had given up on her. They all seemed to want to
put her out of her misery like she was some animal that had outlived its
usefulness.
The bland tiles on the floor were spotless and brilliantly waxed,
reflecting in bright bands the fluorescents overhead that sequentially
brightened Alan's bald pate and grey fringe while they walked from their
mother's room to the ward lounge to wait for the clean up to finish. He said,
"I know Mother wants to be near home, but I wish she'd let me take her with me
to Fon du Lac where she could get some good care. She's just so stuck on this
crappy hospital and her crappy doctors and their do-nothing attitude. It just
grieves me something terrible. But you just can't reason with her."
Alan was plump after the manner of Wisconsin, portly but not quite flabby.
His gut led him along, doing a simple, subtle dance with each step. His every
corner was round: his chin, his neck, his shoulders, his cheeks -- round and
soft and pillowed. Susan walked along next to him, skinny and sharp-edged, thin
lips accented by fine wrinkles and aquiline nose. They didn't look much like
siblings, but they were in tune. She said, "Well, at least she has nice nurses.
31
Struggling
They're very kind to her, and it seems like they do care whether she's in pain.
And they come when she calls."
"Yes," Alan said, "but the nurses don't make the decisions. Her oncologist
is so unaggressive. Just wrote her off, that's what he did; and this doctor
she's had all these years -- old what's-his-face, old Pettifoggle -- doesn't
know what to do. She's so tired -- of course she's discouraged, but they
shouldn't have just stopped chemotherapy like they did. Why didn't they try
something new months ago? And now look at her. There must be something they
can do to give her some strength."
"There's nothing we can do about it right now," said Susan, "except to try
to encourage Mom to go ahead and get the care she needs. She wants to be close
to home. Maybe we can talk to the doctor about it when he comes."
"I hope it'll do some good," said Alan. "Those doctors spend all day
running patients through the clinic one after another, and then they spend ten
minutes talking to Mother and think they know everything they need to know about
her. All they care about is their damned production. Well, I might have to go
home tomorrow, but if I do, I'll come back Saturday and stay the rest of the
weekend. I wish I could come every day, but three hours each way is too long a
trip."
"I can stay through Monday," said Susan. "I'll see if I can't get Mom to
perk up a little. Maybe the doctor can give her platelets again. I don't know
how they can let her nose bleed like that, over and over again. There must be
something they can do. I'll ask doctor Pettigrew when he comes. And she's just
so tired. I don't know what they're doing to make her that way. ...Are you
going to see Jim this afternoon?"
"No. I want to spend as much time as I can with Mother, and if I see Jim,
he'll just argue."
"Yes, it's hard, when we live away, and Jim lives here in town. He talks
to Mom and just gets her discouraged. I don't understand why he wants to just
let her go."
"Yeah. He seems just to want to give up. I don't understand him, either.
He's practically lived with her all his life, she's done so much for him and his
kids -- we've had to make our own way -- and now he just wants to throw in the
towel. It's euthanasia. I get better care for my dog!"
"Mom wants to live, I know she does, and it's hard to give her the support
she needs when I can only come every other weekend. He had her oncologist
convinced two months ago that she shouldn't have any more transfusions, and I
just know she would have died when she was here last month with that bladder
infection if I hadn't made doctor Pettigrew realize she wanted antibiotics."
They talked in this vein for several minutes in the lounge, lamenting
together the superficiality and the intractability and the ignorance of the
doctors and the inexplicable willingness of their older brother Jim to simply
give up their mother to the fates. Susan said, "So what if she's 88. Lots of
people live to be over 90. These small-town doctors just don't know what can
really be done to keep the elderly healthy, but Mom loves her home and her town
and her doctor and she won't change or leave."
. . .
32
Struggling
Shortly after this, between three and four PM, there was a parallel
conversation in a different universe, the nursing universe, as Mom's day-shift
nurse, Ardys, signed out to her PM-shift nurse, Eunice.
The nurses have a secret room near the nursing station, labelled only with
a number, 301, that cryptically fails to communicate that it's the sign-out
room. They don't know that it's secret, but it is because it's unlabelled, and
because they never mention it in any conversation. It's where the nurses
communicate professionally with each other, to protect patient privacy and more
importantly to keep from being interrupted by doctors. Inside, the room is
dominated a simple, old conference table surrounded by utilitarian chairs, with
a counter and cabinets along one wall and a bulletin board leafed with notices
on another. Here the nurses sit, a few at a time, to finish their charting and
to sign patients out to one another. There were three right now, each of them
focused on writing on clipboards. A fourth entered, and as she closed the door,
Ardys said, "Hi, Eunice! Good timing. I'm just ready to sign 314 out to you."
"What do you have?" asked Eunice.
"Well, I've got two patients to sign off. 320 is an old man status post
hip replacement, Jerry Black. He's doing pretty well. He's been real stable.
He made some progress in physical therapy today; started using the walker, so
he's easier to transfer. He asks for his pain medicine once in a while, and
they seem to hold him pretty well. I don't think you'll have any trouble with
him."
"Ok, good. What about the other one?"
"That's 314. "Elizabeth Murray is back. Do you remember her from last
month?"
"No, I don't think I took care of her," says Eunice. "Tell me about her."
"Liz is a sweet little old lady with multiple myeloma. They stopped chemo,
and she's going downhill slowly. Last month she came in with a fever, and she
told everyone she didn't want any antibiotics, she was tired and just wanted to
be let go. So for a couple of days, Dr. Pettigrew just kept her comfortable.
Then her daughter came into town. Was she upset! She talked her mom into
asking for antibiotics, and she recovered. She spent the rest of her stay
asking us, 'Why won't they let me die?' and her daughter spent three days
complaining to us about the doctors."
"Oh. Does she have another infection?"
"No, I don't think so. She came in last night with a nosebleed. The ER
doctor admitted her for transfusion. She's just finished her second unit now.
Her hemoglobin was low, below seven. And she has low platelets, but we haven't
given her any yet."
"What's her status?"
"She has a foam nasal pack. It's a little wet, oozing a little blood, and
she sometimes complains of blood running down her throat. But she doesn't seem
to be in any pain. She's tired. Her vitals have been OK, her blood pressure is
sometimes a little on the low side, not too bad. She hasn't had a fever."
"How much help does she need?"
"She needs help getting to the bathroom. She won't use a commode, and
sometimes it's a bit of a struggle. She couldn't find the call button at 2:00,
and messed the bed a little. I cleaned her up and changed the bed. She was
33
Struggling
embarrassed, of course, poor dear. I have the call button pinned to her gown at
the moment."
"Does she have an IV?" asked Eunice.
"Yes, she has saline at 50 cc's an hour."
"Has she had any visitors?"
"Oh, yes. Her son Jim was with her most of the morning. She lives near
him, about two blocks away, and he and his wife Esther pretty much wait on her
hand and foot. He looks terrible, by the way. He must be sick. He's pale, and
every little effort makes him real short of breath. I asked him how he is, and
he told me he's developed some kind of a heart problem. He's been to see a
specialist in the Twin Cities, and he's supposed to find out the results of his
tests next week."
"That's too bad, if she depends on him. Will she go to a nursing home?"
"Oh, I don't think that's even come up. This afternoon, Liz's other son
and her daughter came to visit her. They are really upset with her care, with
nothing being done. I left a message with Dr. Pettigrew's nurse that they want
to talk to him after clinic, and I'm glad I won't be around to hear what they
have to say."
"What's their problem?"
"Oh, they just seem to think their mother can live forever, and we can make
it happen. They're the Out of Town Children. You know how it is. The kids who
went away and were for years too busy to visit, come riding in at the last hour
on their white horses to save Mom from the bad doctors and the provincial
relatives. At the moment they seem to think that we're talking her into
refusing therapy. No displaced guilt here! Good luck dealing with everyone."
"Thanks."
. . .
Dr. Pettigrew did come to the ward after clinic, a short, soft, pale man
with curly reddish-blonde hair, hurrying along, his open white coat fluttering
in his wake, a stethoscope around his neck. He stopped at the nursing station.
"I had a message to talk to Mrs. Murray's daughter," he said to no one in
particular. "Who's taking care of her?"
"Eunice," said a nurse from behind the chart rack. "I think she's with her
now."
"Thanks," he said, and, picking Elizabeth's chart from the rack, walked
briskly down the hall to her room. But Eunice was not there, nor was anyone
else except Elizabeth. She was a pale, slight, wizened old woman, her bifocals
slightly askew, their left end caught in a tangle of hair by her ear. The head
of her bed was up so that she could eat. She was gazing meditatively not quite
out the window to her right, the fork in her left hand resting precariously near
her coffee cup.
Elizabeth had the bedside table across her bed, her supper tray on it. She
had put the food into slight disarray; a small chunk had been excised from her
salisbury steak and there was a divot taken out of her mound of mashed potatoes.
The milk was half gone. "Good afternoon, Liz," he said. "How are you feeling?"
He knew her answer: it had never varied in the fifteen years he'd been her
doctor.
34
Struggling
"Oh, doctor," she sighed, "I'm so weak. I just don't know what I'm going
to do. You've got to help me." Her voice was weak and soft and airy. She
paused slightly between each sentence and her voice dropped as she finished.
She seemed totally exhausted, a helpless, dependent old woman.
And she was terribly ill, near death in fact, although Dr. Pettigrew wasn't
sure how clearly she or her children realized this. It amazed him that today
she sounded exactly as she had the first time she'd come to his office fifteen
years ago, the same voice, the same words, the same hopelessness, as if this
profound change in her health had been invisible to her. She'd been playing a
one-note samba all these years, and had gone from feeling hopelessly tired and
weak to actually being hopelessly tired and weak. The mantra had not changed,
but with each visit the connotation might be different, and it was his job each
time to guess what was irking her.
Despite the dependent helplessness she showed in the office, she had been a
lovely person to know and to care for. She sometimes had given him little
glimpses of her stressful but interesting life as a small-town housewife and
mother, telling him stories about her children's and grandchildren's crises and
successes. She had endured the sudden death of her husband a few years ago with
real fortitude. She was responsible and diligent. She just wanted her doctor
to know and to care about how miserable she sometimes felt, deep inside.
This apparent exhaustion, over the years he had taken care of her, had made
him feel impelled to diligently order, repeatedly though at long intervals,
blood tests and xrays to unearth any possible unknown, mysterious debilitating
disease that might be sapping her strength. She had many problems, none of them
fatal or even debilitating; meanwhile, she often fit the formal diagnostic
criteria for depression, so he tried one antidepressant after another; but none
changed her.
Eventually he realized that this was just her personality, and he
eventually learned simply to listen and sympathize, adjust her blood pressure
medication if necessary, and then to schedule another quarterly visit. He was
absolutely certain that some day she would get a fatal disease and that he would
miss the diagnosis because she had always seemed to be at death's door, the old
woman who cried, "Wolf!" and he dreaded this.
But she was not a hypochondriac, convinced she had imaginary illness, she
was just dependent. As she aged, she draped herself over him, and her son Jim
and his wife Esther, exhaustingly.
So for a dozen years he had worried that he might miss picking up a fatal
condition in this sweet, dependent, vaguely inarticulate woman. He looked for a
different disease with each subtle wafting change in her symptoms. In the
beginning, he'd found a basal cell carcinoma perched near the end of her nose,
and she came back from the plastic surgeon with a pert little newly turned-up
nose and inside, a hole between her nostrils the size of a fingernail. Both
annoyed her, differently. She often said, "I wish I'd never had that taken
off," but she never said whether this was because of the internal hole or the
pert shape.
Later he'd found her to have pernicious anemia, and treated it; then polyps
in her colon. She got bad back pain and they found it was due to spinal
stenosis, an arthritic condition that threatened to pinch the nerves inside the
35
Struggling
backbone -- and she bled from a stomach ulcer caused by the arthritis pills she
took for the pain. She had a cataract removed from each eye, about three years
apart, and her vision had been restored onto to succumb in the last couple of
years to macular degeneration, and now she was able to read only large print.
He'd found an abdominal aortic aneurysm that fortunately wasn't enlarging, and
she had osteoporosis that threatened her with hip or spinal fracture. No, she
wasn't a hypochondriac, and there was usually more than one reason to feel worn
out and discouraged, including family stresses that she usually only hinted at.
Then one day, a year and a half ago, she had a little stroke, and was sent
away to a neurologist in a big hospital in another town. While there she was
discovered to have new anemia, which this time turned out to be due to a kind of
multiple myeloma called "Waldenstr”m's macroglobulinemia," a cancer of the white
cells that make immunoglobulins of the M clas -- the big globulins, five times
the size of the G type -- proteins that normally attach to infecting organisms
so they can be neutralized. The protein-producing cancer cells were hindering
her marrow from producing normal blood cells.
He had been horrified because of all the difficulties this threatened her
with. He remembered vividly the first woman with multiple myeloma that he'd
cared for, Helen McCarthy, who'd been in the Cranberry Care Center for nearly
two years, wishing she could be dead because the disease had caused such severe
osteoporosis of her spine that it, basically, just crumbled. She'd had terrible
pain with any movement at all. There was so little that could be done for her,
and it was a grief to everyone to watch her suffer and slowly die.
Besides this, myeloma threatened her with blood clots, made her susceptible
to infection, and crowded out the normal blood-producing cells in the bone
marrow, including the platelets that stop small leaks in blood vessels. All in
all, this was terrible news for her.
When he got the summary note from her oncologist, Dr. Tim Sampson, he
called for her chart, and searched it for clues that he might have missed that
would have permitted an early diagnosis, and was relieved but not less sorrowful
when he found none.
She hadn't seen him but twice since then, for now she draped herself over
her oncologist, a diligent man who had given chemotherapy for the myeloma beyond
any reasonable time, until it was more than obvious it was completely
ineffectual. Her IgM level had steadily risen through the past two years: 1.7,
2.1, 2.7, and last month 3.5, and then doctor Sampson had stopped her
chemotherapy. Or more precisely, he had finally convinced her daughter and
younger son to allow this.
She had needed blood transfusions because of her failing bone marrow for
about the last six months, at first monthly and now more often.
She had been slowly wilting. She sagged as her marrow failed. None of its
cell lines -- red cells to carry oxygen to her tissues, white cells to combat
infection, or platelets to stop vascular leaking -- were being produced in
adequate numbers. She had been needing red-cell transfusions more often as her
platelet count drifted down, and then she began to have nosebleeds from the old
hole inside her nostrils, which couldn't be repaired. Each time, these were
stopped with packing and lately sometimes only with platelet transfusion. Her
white count sagged, making her even more susceptible to infection. Just two
36
Struggling
months ago she'd nearly died from a urinary tract infection with a type of
bacteria that usually doesn't cause infections.
The first day and a half of that admission she had asked him only to make
her comfortable, and said, "Just let me go," each time he had asked if she
wanted anything from him. But during the second afternoon, her nurse had called
him in clinic, said that Liz's daughter, Susan, was visiting her, and told him
that Liz had decided she wanted an antibiotic -- or to be exact, Susan had told
the nurse that Elizabeth wanted an antibiotic. It had quickly vanquished the
bug and she went back home.
. . .
Now she lay back against the pillow, not bothering to put her fork back on
the tray, and looked up at him. She said, "Help me."
"What would you like me to do for you?" asked Dr. Pettigrew.
"I don't know," she said. "You decide."
"Do you have pain?"
"Not right now."
"Are you short of breath?"
"No."
"Does your stomach bother you?"
"No."
"Are you having trouble sleeping?"
"No; at least I can sleep."
"What would you like me to change?"
"Just make me feel better."
"Ok, I'll try. How do you feel badly?"
"I'm just so tired and weak."
"Is there anything in particular you'd like me to do for you?"
"Oh, I don't know. I don't know why they make me keep going like this."
Liz just wasn't going to be giving out any specific answers right now.
While examining her, he asked all the dozens of questions required by the
process of taking a thorough history, abbreviating and collating groups of
questions as much as possible to avoid tiring her without missing important
information she might be willing to tell him, feeling a mixture of frustration
at her deliberately vague and uninformative answers and guilt for glossing over
detailed questions that might reveal a clue about her.
He found that her left eardrum was distended with a blood blister, and then
was able to get her to admit that since yesterday she "sometimes" heard ringing
in this ear, and that she'd had "a little" pain in the ear yesterday, but not
now.
Her left nostril was plugged by the packing that the ER doc had put in, a
small sponge now red, slowly oozing bloody fluid that she wiped at every couple
of minutes with a tissue. A wet blood clot plugged her right nostril.
There was a knock on the door; it opened before he could answer. There was
a woman; slender, sharp-faced, stern. "Good afternoon, I'm doctor Pettigrew,"
he said, looking at her. Must be family, he thought. He knew Elizabeth's son
Jim, who lived in town and saw him as a patient, but he realized he wasn't sure
who her other children were.
"I'm the daughter," Susan said. "What are you going to do for her?"
37
Struggling
He noticed that she hadn't told him her name. This was typical; most
people, in fact, didn't bother to introduce themselves at all, depending on
medical telepathy to bring recognition. He dreaded the inquisition that he knew
was about to begin, felt sure that there was nothing he could say that she would
believe. "We're going to do our best to keep her comfortable."
"What about her infection?"
"I don't see any evidence that she has infection right now."
"What about the nose bleeds?"
"The packing seems to have stopped that."
"Are you going to give her platelets?"
"No, her bleeding is pretty minimal right now, platelets are a little hard
to get, and I'm not sure she would want that." He noticed that Elizabeth was
studiously gazing at the ceiling.
"So what is your plan?"
"To keep her as comfortable as possible."
"What are you going to do right now?"
"I'm going to ease that clot out of her right nostril and replace it with a
pack, make sure she has pain medication ordered, and I'll order an egg crate
mattress for her bed." He paused slightly and steeled himself. "And I'd like to
talk to you and your brothers."
"Why do you want to do that?"
"I'd like you all to be agreed. Nothing would make your mother more
comfortable than knowing her children were agreed."
"Jim isn't here. He won't be here until tomorrow."
"Who is here?"
"Me and my brother Alan. He'll be here today and tomorrow."
"Well, let's talk."
They excused themselves from Liz, and walked down the stark hallway toward
the lounge where Alan was.
Susan said, "I wish you hadn't said that right in front of Mother."
"Said what?" asked doctor Pettigrew, feigning ignorance. One useful thing
about being the aging small-town doc is that it's easy to fake ignorance with
the out of town relatives.
"That we don't agree. There's no call to upset her by talking about things
like that right in front of her."
Doctor Pettigrew had a moment's contrary impulse to read chapter and verse
to Susan, to tell her the law's requirements: that he should reveal medical
details about the patient, to even immediate family members, only with the
explicit written permission of the patient; that it was her mother who had the
sole right to know everything, not Susan or her siblings; that it was her
mother's sole right to request or refuse treatment and that even the children
had no legal standing to do so; and that he as Elizabeth's physician had a clear
legal right to withhold any treatment that he judged to be futile, as the
transfusions she was receiving clearly were.
But he sensed that to bring any of those things up would be to throw
gasoline on hot coals, so he said, "Oh, your mother knows you aren't agreed.
This isn't news to her, and it's important for her to know I understand this,
because it's distressing her. Nothing I can do would comfort her as much as
38
Struggling
knowing her children were agreed." He didn't add that she and Alan had already
hindered a peaceful, comfortable death more than once already, prolonging their
mother's misery by at least three months. He didn't add that whatever they had
up their sleeves would simply give her time to develop some complication that
would be more painful or distressing than what she'd already gone through.
Susan didn't answer. They went to the lounge, where he spent an hour and a
half, his wife and his supper getting cold at home, patiently listening to her
and Alan complain and challenge and question, and carefully explained to them
details that they surely had heard before from Elizabeth's oncologist, that the
treatment she'd already received had been ineffective, that the most that could
be done was to continue giving antibiotics and transfusion, which would only
give her a chance to have something worse happen.
They seemed not to hear. They demanded to know why she wasn't getting
transfusions of platelets, white blood cells, or more blood; they asked why he
wasn't already using antibiotics; they asked whether she shouldn't be in a
larger hospital, but were adamant that a different oncologist than doctor
Simpson be chosen: "He's given up on her."
Doctor Pettigrew deflected all their questions with vague and noncommittal
answers, or gave technical answers which confused them, and when they paused to
think, repeated Liz's need for them to come to a meeting of minds with Jim. It
seemed useless to tell them that they had no legal standing to demand any
treatment, that their mother was still competent and was not choosing to have
any. They would only be more angry, and that would just add one more complexity
to the task of giving Liz a peaceful sendoff.
"But Jim never listens to us," protested Alan. "We can't talk to him. We
explain what Mom wants, and what is best for her, and he just argues."
"What does Jim think?" asked doctor Pettigrew, but neither of them, despite
their apparently long arguments with him, were able to say just why Jim thought
as he did. Clearly they hadn't been listening, themselves.
Instead, Susan retorted, "He just tries to get Mother to give up. He wants
to write her off. I don't know why. He's had all the time with her, living
here all these years, and we haven't been able to visit very often because of
all our responsibilities."
"Have you ever just sat with your mother and asked her what she wants?"
asked doctor Pettigrew.
"There's no point in doing that," said Alan. "She's so full of Jim's
fatalism that she doesn't know what she really wants."
When he had a chance to divert the conversation a little, he said, "I don't
think I've had a chance to meet either of you before. Susan, you've come quite
a distance, haven't you?"
"Yes," she said, "I live in Milwaukee. It's about a four and a half hour
drive each way not counting stops."
"That's long. Do you have any trouble getting off work to be here?"
"Not at the moment. I teach English, and the school year just ended two
weeks ago. During last year I used up nearly all my family leave visiting her."
"I'm sure it was worth it. I'd guess that over the years it's been hard to
get home to visit your parents as much as you'd like. And you, Alan? What
about you?"
39
Struggling
"I'm in real estate in Fon du Lac. It's a bit over three hours for me; I'm
my own boss, so I don't have sick leave to worry about, but business commitments
don't wait for family matters, so I have to go back and forth a lot."
"Did you both grow up here?"
"Oh, yes," said Susan, "And Mom and Dad were born here! We both got out of
town as soon as we graduated from high school and never looked back."
"Didn't like the small-town life?"
"Partly, I'm sure. One's own town always looks prosaic to the teenager,
and every other place seems exotic and exciting. But partly we were getting
away from Dad. He was just so rigid and cold. I don't think either one of us
ever did anything that pleased him."
"Was he hard on your mother?"
"I don't think he ever abused her," she said, "he was just hard to live
with. Fortunately, he had his business that took all his attention, so she had
the home. I think she just knew how to avoid conflict with him."
"I suppose between your feelings about your father and being busy with
starting your own lives, there wasn't much time to make the trip back home when
you were younger."
"It wasn't just that," said Alan, "Jim and his kids lived with them, so
even when we visited, our kids really didn't get their share of attention from
Grandma. She was practically Mom to his kids, and ours still hardly know her."
"Your dad's been gone for a few years now," said doctor Pettigrew. "Have
you been able to visit more?"
"Yes," said Susan, "but our kids are grown, and so they don't come. And
Mom's gotten so frail that she can't get out and do very much. This illness,
though, really took us by surprise. We had no idea how serious this was until
about six months ago."
"That's right," Alan chimed in. "If Jim or Mother had let us know how sick
she was, we would have come up here a lot more."
Doctor Pettigrew didn't say that maybe Jim wasn't sure they were
interested. He said, "Well, we can only respond to what we know about. Do you
think that we can all meet together in the morning? I'll begin rounds at about
7:30, and we could meet some time after that."
"Sure, we can do that," they both said.
. . .
Doctor Pettigrew went back to Elizabeth. He drew the clot out of her right
nostril, sprayed it with an anesthetic, then lubricated the packing material, a
slender white stick of expansile foam, with anesthetic lubricant and slipped it
into her nostril. He trimmed the exposed end so that it would look neat, would
not be hanging out to tickle her. He said, "If you need anything else, just
have your nurse call me."
Afterwards, now seriously late for his evening obligations to his family,
he reviewed Elizabeth's chart, skimming through the notes from her oncologist.
She had agreed four months ago that further "supportive" care -- meaning
transfusions and antibiotics -- should not be used any longer, but each time she
got sick, with fever or with nose bleeds, Susan or Alan had descended upon the
oncologist, and "support" was used after all.
40
Struggling
The oncologist's most recent note, written just a week before, said
cryptically, "Considerable debate among family members of the value of current
care; requested DNR/DNI." A novel hidden within a sentence. Do Not Resuscitate
/ Do Not Intervene. Tomorrow was going to be a long day, no question about it.
. . .
He called doctor Sampson, her oncologist. "Tim, I'm just calling to let
you know that I've got Elizabeth Murray in hospital here. She had epistaxis
again. Wondered if you might have any suggestions."
"No, she's had absolutely no response to chemotherapy. We should have
stopped it four or five months ago, but her kids wouldn't let her. There's
nothing to be done for her. I told them then that there was no point in giving
her transfusions. Her son Jim understands, but he's had some fierce arguments
from the other two."
"Yeah, I wondered about that. I just spent an hour and a half with the two
of them. Elizabeth is telling the nurses and me that she can't understand why
they won't let her go. But I don't think she is capable of telling them
herself."
"Maybe not. By the way, I got Jim's cardiac biopsy results back from the
Heart Institute."
"What do they show?"
"It's terrible. He's got amyloidosis. He has an appointment with me next
Thursday to go over the results. He's not going to last six months."
"Oh, my!" said doctor Pettigrew. Amyloid. He remembered, from medical
school pathology lab, the microscope slides of amyloidosis, streaks of bright,
bland red, layered between cells like broad walls of scar, getting in the way of
every function. Back then experts suspected that amyloid was built of deposits
of immunoglobulin, antibody protein. It could occur in any disease in which
there was excess stimulus toward antibody production. Much more was known about
it now, but there was still no way to remove it. Jim had seen him in the office
three weeks earlier, complaining of frustrating shortness of breath with
activity that had been insidiously worsening for months. Tests had pointed to
his heart, so he'd sent Jim off to the Tertiary Heart Clinic, and now he was
waiting to hear what they'd found. It always took a couple of weeks to get
their reports.
"Is this treatable?" he asked Sampson.
"Well, in his case the amyloidosis is secondary to multiple myeloma. We
can give him chemotherapy for the multiple myeloma, but nothing will remove the
amyloid that's already deposited, and more will keep forming until there's a
complete response to the chemotherapy, which isn't going to happen in time for
him. He has a terrible cardiomyopathy."
"Isn't this ironic! His mother is near death from one form of multiple
myeloma and he is, too, from another. Should I have him call you?"
"No, I think I'm not going to tell him until he comes in for the
appointment," said doctor Sampson.
"You're right. He's got enough to deal with right now."
. . .
Doctor Pettigrew sighed after he hung up, and dictated a history and
physical for Mrs. Murray then wrote an order for morphine, 2 milligrams,
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Struggling
intravenously, every hour if needed for discomfort. He did not write any orders
for blood, platelets, antibiotics. He thought for a minute, looking into
infinity, and then did not order any morning blood work. He signed the order,
flagged it, and laid the chart on the ward clerk's desk.
One of the nurses, a stocky, pragmatic middle aged woman named Vi, caught
his eye and spoke up. "What are you going to do with Elizabeth Murphy?"
"Nothing, at the moment. I cleaned a clot out of her right nostril and put
in a pack. Hopefully she won't have blood trickling down her throat any more.
That was bothering her quite a bit." Gesturing toward her chart, he added, "And
I wrote a morphine order in case you guys need it. She's comfortable right
now."
"Did you give us a DNR status?"
"Mmmm... Not yet. To resuscitate her wouldn't be appropriate, it's not
going to succeed, she wouldn't want it, but I just spent an hour and a half
listening to her son and daughter complain about the wretched care we give. I'm
not prepared to add fuel to the fire with a DNR order posted in her room. She
won't arrest tonight, anyway."
"So we have to resuscitate her if you've guessed wrong?"
He paused, sighed. "No. You're right. We have good documentation that
she's asked to be DNR already, and we can't be required to give futile care."
He retrieved the chart, wrote above his signature, "DNR per prior directive,"
and put it back on the desk.
"I really feel sorry for her," said Vi. "When we are alone with her, she
asks, 'Why won't they let me go?' And after her daughter has visited with her,
then the daughter tells us she has decided to take treatments. I think the
daughter is putting words in her mother's mouth."
"You're probably right. I'm going to have a meeting with all three of her
children in the morning. Jim is supposedly going to be here."
"I've known Jim all my life," said Vi. "I don't think many people know him
well. He's had a tough life. His first wife left him and their two children
when they were still toddlers. I don't know if Jim ever heard from her again."
"Really," said doctor Pettigrew. "I didn't know that. How did he manage?"
"Well, Liz made him move in with her and his dad. She mothered those kids
and Jim worked for his dad. He had Irv's Machine Shop -- I think it closed
about the time you came to town."
"I seem to recall that Irv died suddenly, I think of a heart attack, the
year after I got here."
"That sounds about right. My husband worked for Irv, and he said that Irv
treated Jim terribly. Not that he was mean to him, I don't know about that, but
he barely paid him more than minimum wage even though he was his own son and one
of the best machinists in the shop."
"Any idea why he was so cheap?"
"Some people are just cheap, and Irv was champion cheap. I suppose he
might have figured the difference between a fair wage and what he paid Jim was
board, rent and child care."
"Elizabeth hardly seems to be the sort of person who would demand that her
son live with them. Are you sure it wasn't Irv?"
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Struggling
"No, when Jim talked about that part of his life, he always made it clear
that it was his mother. She seems like a wimp, but she has her ways. Liz isn't
as weak as she seems. She just avoids open conflict in every possible way. "
"What happened after Irv died?"
"Jim and Liz sold the business piecemeal and then Jim got a really good job
as a supervisor at Three Lakes Machine Tool."
"When did Jim re-marry? His wife seems really sweet."
"Oh, Jim had known Esther for a long time, they'd been good friends, but he
didn't court her until his kids were grown. She's been good for him; they're a
wonderful couple. His kids love her like she was their own."
"That's interesting. Any idea why Susan and Alan are so at odds with him?"
"I don't really know. Irv was pretty hard on his kids -- real demanding
and too strict, not so much abusive, I think. He wasn't very understanding.
Jim is oldest and he left first, but he went to work out of high school and
stayed in the area. Susan and Alan both left for college and never came back.
I think they tried to distance themselves -- you know how kids need to assert
their independence."
"But Jim didn't?"
"He probably did. But when his wife left him and the kids, Liz took them
in -- she insisted they move in with her -- and raised the kids. Meanwhile,
Susan and Alan had made lives for themselves hundreds of miles away... I think
Susan is a teacher, and Alan is in insurance or something... Susan did say to
me last time her mom was in, 'It isn't fair to my children that Jim's kids got
so much time with their grandma.' As if it were all Jim's doing, and as if
Susan couldn't have brought hers to visit once in awhile."
"Have Susan's kids visited? I haven't met any."
"Oh, no. Only Jim's kids visit. His daughter comes nearly every day."
"Well, it's the old story, I guess. The child who's lived his life near
Mom and has watched her get old is able to let her go. The children who moved
away and seldom visited are suprised to suddenly discover find out that Mom has
gotten old and they're going to lose her. They come at the last minute and
demand that we make her young again so they can have what they were too busy
for."
"Yup. And we're no good if we can't do miracles. People complain that we
play god, but they treat us as if we were gods. They pray for miracles, give
lip service to us, and they don't obey our commandments."
Vi laughed. "Well, you aren't a god, that I know," she said, and went back
to her patient.
. . .
The next morning Dr. Pettigrew skipped breakfast with his wife in order to
be early for rounds. The family conference with the Murrays seemed certain to
hinder him from taking time with other patients and from starting office hours
on time. He tried to recall whether any patients or their families had ever
seemed aware that his time with them could not be infinite or that by holding
him back they might endanger someone with more severe problems. There had been
a few. In fact, some people were too considerate of others, willing to defer
necessary attention for the benefit of others. Ah, well, it was just a
frustration.
43
Struggling
When he checked Elizabeth's vitals record, he saw that she'd had a fever
during the night. He went into her room, and greeted her, but she was asleep
over her breakfast tray. Her grey hair was disheveled from the pillow's
pressure, the bed clothes in disarray. In her nostrils were symmetrical convex
buttons of dried blood. She breathed comfortably. He woke her. "Mrs. Murray,
good morning, how are you?"
"Oh. Good morning," she said thickly. "I'm so tired and weak."
"Yes dear, I know," he said. "Are you comfortable?"
"Yes."
"Do you have any pain at all?"
"No."
"How's your breathing?"
"OK"
"How's your stomach?"
"Sometimes I feel sickish."
"What seems to do that?"
"When they turn me."
"That's probably related to the pain you had yesterday in your ear," he
said. "Is there anything else?"
"Sometimes my hip hurts." She pointed, as she said this, toward her left
hip.
"Your left hip?" he asked.
"No, this one," she said, putting her hand on the side of her right hip.
Doctor Pettigrew examined her hip, and found no tenderness or bruising. He
listened to her heart and lungs. She had a few coarse crackles over her back on
the right side, but she was breathing quietly and comfortably. She had
bronchitis, obviously. It probably would turn into pneumonia, give her a chance
for a quick and comfortable death, he thought. She had a soft heart murmur,
from her anemia. He sensed a presence enter the room as he listened. He took
his stethoscope out of his ears and draped it around his neck.
"I hate these nose bleeds," she said
"I know, but the packing in your nose has slowed it way down." He
straightened, and saw that her three children had slipped into the room. Their
unannounced invasion rankled a little. He ignored them for a moment, asking
Liz, "Are you getting enough relief from the pain medication?"
"Yes, I think so."
"I don't think it's doing enough for her," broke in Susan. Her face was
taught, intense. "Couldn't you give her something a little stronger?"
"Sure," said doctor Pettigrew. "We can increase her morphine. It'll make
her a little sleepier, too."
"Oh, don't you have something better, something that will take away the
pain without making her so dull?" asked Susan.
Doctor Pettigrew didn't start a seminar on pain management, he just said,
"No, there really isn't." He looked at Elizabeth, who had closed her eyes and
lain back on the pillow, looking for all the world as if she had suddenly fallen
asleep. "Why don't we step out to the lounge?" he said to the children.
Alan and Susan walked ahead of the others; Jim and his wife Esther lingered
just slightly, creating some distance. Esther moved close to doctor Pettigrew
44
Struggling
and said quietly as they walked slowly down the hall, "I'm not going to say
anything when we're together, but you should know that they aren't telling the
truth about us. They say that Jim and I are manipulating Elizabeth's decisions,
and destroying her will to live. That isn't true."
"I know; I can tell that," said doctor Pettigrew.
"We never tell her what she should do; they always are. They work hard to
get her to change her mind and take more treatment. I'm not blaming them, but
it bothers me that they falsely accuse us of doing the very thing they are, as
if it's wrong for us and right for them."
"That's the way Perfect People are," answered doctor Pettigrew. If you get
in the way, they paint you with tar. No point in fighting 'em.
"It's hard not to when you know Mom doesn't want that."
"Oh, I mean right now. It's not going to matter very much what they want,
because what's happening here isn't really very much in my control or anyone
else's. I just want to get everyone on the same page. Elizabeth would be
comforted if finally her kids agreed." They arrived at the lounge. "Here,
let's have our conference."
They all sat in the sunny lounge at the end of the hallway, doctor
Pettigrew at the end under the window, Alan and Susan on one side, close to the
doctor, Jim and Esther on the other side, close to the door.
Doctor Pettigrew said, "I asked you all to be here because it's important
that you be on the same page with each other. Liz knows you have different
feelings about what's best for her, and this morning I just want you to each
take turns listening. One of you speak at a time, and the others just listen.
When we're agreed, we'll go talk to your mother together."
They were all silent, avoiding each others' eyes. Doctor Pettigrew let
them be uncomfortable for a minute, then said, "Jim, what has your mother told
you she wants?"
"She wants to be comfortable."
"Sure, of course. We all do. But does she also want us to try to prolong
her life?"
He hesitated, then said, "Well, she always tells me that she's tired of all
this and just wants to be allowed to die."
Susan erupted. "That's because you..." But doctor Pettigrew
quickly put up his hand to stop her.
"Jim," he said, "how does she feel about treatment?"
"It's not that she wouldn't like to live, but this has gotten really
miserable for her. She's had more and more back pain, and these incessant
nosebleeds, and infections. Doctor Sampson has been really clear that the
treatments she's taken haven't controlled the disease, and that more will only
make her even more sick."
"If we took her to Mayo, I'm sure they'd find a something that would work,"
said Alan.
Doctor Pettigrew put his hand up again. "I believe she told me that she
doesn't want to be resuscitated. Did she talk to you about that?"
"Not in so many words," said Jim. "But I know she's ready to die. I think
she just wants to get it over with."
45
Struggling
Doctor Pettigrew turned to the other side of the room. "Susan, what does
your mom say to you?"
"I don't really need to ask her how she feels. I'm on the same wavelength
with Mom. I can just tell what she wants from her tone of voice. I know she
wants to live, and I want to be by her. I know she wants to have any treatment
that offers real hope for her."
Esther sighed, caught doctor Pettigrew's eye and raised one eyebrow subtly.
He said to Susan, "What treatments does she feel offer hope for her?"
"You're the doctor, you ought to know!"
"I understand. But what treatments seem likely to help?"
"There must be some new treatment for myeloma that she could take. I just
can't believe that there's nothing to be done. And in the meantime, her white
blood count is low: why isn't she getting transfusions of white blood cells?
Her platelets are low: why aren't you giving her platelet transfusions?"
"There really isn't any chemotherapy that will give a hope of curing Liz.
Dr. Sampson treated her for more than a year, and her disease never showed a
response. Now we're in a situation where her bone marrow has failed. We've
given her a transfusion of red cells. These would last for weeks if she weren't
bleeding, but she will bleed because her platelets are so low. Platelet
transfusions are a bit hard to get and the platelets only last a few hours.
Then we're back where we started."
"What about a white blood cell transfusion?"
"Those are harder to get than platelets, and are less useful. She will get
another infection, and white cell transfusion would only help for a few hours.
The problem is that her disease isn't going to get better. All these things can
only prolong the state she's in now, and then new problems will crop up that I'm
afraid will make her suffer even more than she is."
"You don't know that! You can't see the future! What else could happen?"
"She could have bleeding that was painful. For example, her abdominal
aneurysm could start leaking, or she could get pain with an infection."
"Is there any sign of that?"
"Yes, she had a bit of fever last night, and she has crackles in her right
lung this morning. She's got bronchitis, and this will probably go on to
pneumonia. Pneumonia can cause pleurisy."
"Are you treating it?" asked Alan.
"No, I just noticed it now, and we're meeting to decide together how to
approach her about it."
"I would treat it," said Alan. "I can't imagine letting something like
that go."
"Well, this may her chance to 'go' quietly and comfortably," answered
doctor Pettigrew. "If we don't treat it, she'll be able to escape in just a
short while from all this."
"I'm just not comfortable with that, doctor," said Alan. "We should do
everything there is to do for her until there's nothing left we can do. It's
wrong to do less."
"I can tell you that there are a great many things that are feasible, but
very few that would be appropriate, and there's nothing I can offer that will
46
Struggling
guarantee that she'll have a comfortable prolongation of life." He was
surprised at how stilted this seemed.
"Well, let me tell you that I wouldn't treat my dog that way!" said Alan.
"When our little cocker got a bad hip, we had hip surgery; when she got
cataracts, we had cataract surgery; when she got diabetes, my wife and I gave
her insulin injections. We should do everything possible until there's nothing
left to do!"
"Not everyone shares those values," said doctor Pettigrew. "Many people
put their animals to sleep when they start to suffer. We don't put people down,
but there does come a time when all there's left is suffering."
"You can relieve her suffering; you have pain medication," said Alan. "And
you should do everything you can to keep her going. She's only 88 years old. I
have a neighbor who's 94 and he mows his lawn and drives his car."
"Your neighbor has a different body than your mother, one without multiple
myeloma," said doctor Pettigrew. "In any case, the difference between a dog and
a person is that the person can tell us what they want. Your mother has the
right to tell me what her preferences are. She's competent. I don't want to
offend any of you, but none of you has a legal standing to direct her care. In
fact, I don't even have the legal right to tell you anything about her condition
without her written permission. We ignore this legal requirement because she
clearly wants you to know, but we can't ignore her right to decide."
"You decide things for her, though," retorted Alan.
Doctor Pettigrew didn't swing at this pitch. He said, "Your mother has the
right to decide what treatment she wants, and I would like us all to agree to go
back to her room and explain to her very simply the situation she's in right
now, and ask her for her preference, and then abide by it."
"That's fine with me," said Jim, and then Susan, too.
"Don't bias her!" Alan said.
"How would I bias her?" asked doctor Pettigrew.
"Doctors know that how they tell people about their condition biases them
on what to do. You've got to agree to present this to her neutrally."
Instead of telling Alan to stop being an angry, controlling, immature
middle aged boy, doctor Pettigrew said, "Of course. I'll be glad to."
Doctor Pettigrew looked at his watch. The monkeys had chased the weasel
round and round this mulberry bush for more than half an hour. He didn't have
enough time to finish rounds on his other patients and begin clinic on time. He
sighed. How long would the conversation take in Elizabeth's room?
"Here's what we'll do," Alan said. "We'll all go back to Mom's room.
Doctor will tell Mom what the situation is right now, and then we'll ask her for
what she wants. Nobody will tell her what to do. And we'll abide by what she
wants."
Jim swallowed and said, "That's fine with me;" Susan nodded and said
brightly, "Ok." Esther kept her lips pressed tightly. She was working hard to
keep her vow of silence.
As they walked quietly back to Elizabeth's room, doctor Pettigrew fell in
beside Esther, who was lagging. "You doing OK?"
"Yes. You're doing wonderfully. I never thought I'd see this."
47
Struggling
They trooped into Elizabeth's room. She was lying on her left side, facing
toward the door. She seemed to be dozing. Dried blood stained the foam plugs
in her nostrils; her skin was pale. The room smelled faintly of old urine, and
of crap. She must have been incontinent again. Doctor Pettigrew knelt on the
floor beside her bed so his face would be at her eye level. What an exercise
this was.
"Liz?" he said.
She opened her eyes. "Yes?"
"Liz, all your children are here with me, and we want to ask you what sort
of care you'd prefer right now." He paused; she didn't answer. "You know that
you've got this troublesome condition that hinders your marrow from making all
types of blood cells."
"Yes."
"And you know that Dr. Sampson recommended you stop chemo because it isn't
helping you."
"Yes."
"So we can see the end of your life coming, and we want to ask you what you
would prefer. All your kids are agreed that we'll do exactly as you wish."
"I'm tired."
"I know. We'll be brief. We can go two directions. We can stop trying to
keep you alive and work hard to keep you comfortable, or we can do everything
possible to keep you alive as long as we can. Or we can go in between." He
paused, and again she said nothing.
Alan interjected, "Mom, we just want to do what you want us to."
"Yes, we agree that we should only do what you want, Mom," said Jim.
"I don't know," Elizabeth said. "You decide." She closed her eyes.
"Right now we have three things to think about," said doctor Pettigrew.
"We can give you more blood; you know that makes you feel a little stronger. We
can give you platelets to stop your nose from bleeding for a while." He paused,
but again she said nothing. "The third thing is that you have bronchitis. This
probably will bring on pneumonia, and that will probably take your life."
Behind him Susan gasped softly. She hadn't expected this.
"If you truly want to be allowed to go, then we should not treat this
infection. We can keep you comfortable. If you really want to be kept alive as
long as possible, then we should treat the pneumonia." He did not yet promise
that she'd be comfortable if she chose treatment because the only way to
absolutely guarantee a lack of pain is by accepting that complete pain relief
may also shorten life, and he expected Alan would say this would bias her
decision.
"I don't know," Elizabeth said.
Jim stepped up. "Mom, we love you. We only want what's best for you. We
know you're tired, and if you want us to let you go, that's OK. If you want to
take the treatment, that's just fine. Do you know what you want to do?"
Elizabeth was silent. She looked at each of her children, one at a time.
She transfixed each of them, then asked plaintively, "What do you think?"
Susan rushed to the side of her bed, knelt down, and threw her arms around
her mother's neck. "Don't give up hope, Mom! You know you want whatever can be
done! Tell them!"
48
Struggling
Elizabeth said nothing, didn't hug Susan in response. Perhaps she was just
too tired to do it.
Doctor Pettigrew caught Alan's eye. Alan blushed and looked down. He
walked close to the head of his mom's bed on the other side from Susan, laid his
hand on Elizabeth's shoulder, and said, "Mom, we love you. We'll support
whatever you choose."
"I don't know," Elizabeth said.
At the back of the room Esther looked baffled. She shook her head ruefully
when doctor Pettigrew caught her eye.
Doctor Pettigrew said, "You don't have to decide anything right now. I'm
going to order a platelet transfusion so that blood won't run down your throat
so much. I'm not going to order antibiotics for your bronchitis. You can
change your mind if you want to. You can think about it, and if you want us to
do things differently, just let your nurse know. I'll be in clinic all day."
He then excused himself, and went to finish rounds on his other patients.
He started clinic more than a half hour late, and his first patient had left
already, tired of waiting. Not many patients ever left when he was behind.
None of them explained why they put up with long waits, but presumably they had
figured out at least that they wouldn't get seen any faster by leaving.
In midafternoon, his office phone rang. It was Elizabeth's nurse. "Doctor
Pettigrew, this is Eunice. Mrs. Murray's daughter just came out and told me she
has decided she wants antibiotics."
"Finally talked her into it, did she," he said.
"I don't know," said Eunice.
He was quite sure of it, but he just didn't have the time or the spunk to
go to Elizabeth, get alone with her, and make sure it was really her own
preference. He dreaded giving her an antibiotic; it would do nothing but
prevent this bronchitis from bringing her long ordeal to a merciful close, and
would mean more suffering for her. He said, "Give her ceftriaxone one gram IV."
"Is that a one-time order?"
"Yes. I'll review it tomorrow. It's a once-daily antibiotic anyway."
"Ok, doc. That's ceftriaxone one gram IV for Mrs. Murphy times one."
"Correct."
. . .
On the morning of the third day, the next day, when doctor Pettigrew came
for rounds, he looked first at Elizabeth's vitals record and saw that she no
longer had fever. He slipped into her room. The head of the bed was raised to
that she could eat breakfast. She had disturbed the all food on her tray, but
had eaten little.
Outside the window, the sun was shining brilliantly, the sky clear. The
trees and shrubs and lawn were June-green, not a spot of brown anywhere. Where
the sun struck the grass just so, drops of dew sparkled with rainbow colors.
Inside, here was Elizabeth in her rumpled bed, pale, fatigued; little brown foam
plugs sticking from her nostrils, pushing gently with her spoon at the scrambled
eggs. It is so hard to watch people die, he thought. With all our technology,
we prolong people's suffering so exquisitely. He regretted his cowardice, his
indolence, his unwillingness to confront Susan, in ordering the antibiotic
yesterday.
49
Struggling
"Good morning, Liz," he said. "How are you?"
"My ear hurts."
"Which one?"
"This one." She raised her left hand toward her head.
He looked in her ears with the otoscope. The eardrum was still full of
blood, not really changed, but now the whole canal was bloody, with a little
trickle of blood poised to spill out. No wonder it hurt. The platelets hadn't
prevented this. "You've had some more bleeding into the ear canal, Liz," he
said. "It's pulled skin away from cartilage. That hurts."
She glanced out the window, then said, "My nose is plugged."
"Yes, it is. Would you like the packing out? It's about time to do that."
"Yes."
He took tweezers, carefully separated the dried blood at the edge from the
skin it was stuck to, and was pleased that both packs slipped out painlessly,
trailing strands of brown mucus. Her breath was foul. He wiped her nose
carefully with a tissue, and looked inside with the otoscope. There were little
areas that looked freshly irritable, but no bloody oozing. He sensed movement
and glanced up.
Eunice had come into the room. He pointed at the materials on the bedside
commode and said to her, "I just took the packs out of her nose. Here's fresh
packing. If her nose bleeds today, just slide one of these into her nostril.
These are just little sticks of compressed dry sponge. Spray a little of this
anesthetic in her nose, and coat the stick with a little viscous xylocaine so it
won't irritate her nostril, and slide it in. It expands from the moisture once
it's in."
If she was surprised to be told so simply how to do something that normally
doctors reserved for themselves, she hid it. She just said, "OK."
Doctor Pettigrew listened to Liz's chest with his stethoscope. This
morning there were extensive crackles on both sides, and she had no breath
sounds over the lower part of her right lung. So she'd gotten pneumonia, for
sure. "How's your stomach?" he asked.
"I'm sick to my stomach," she said.
"Is it steady, or does it come and go?"
"It's always there."
"We'll give you some medication to take care of it," he said, and glancing
at Eunice, said, "I'll write for compazine 5 IV." She nodded.
"Are you getting enough relief from your pain medication?" he asked.
"Oh... ...yes," she said weakly.
"Well, you be sure to let us know if it isn't enough," he said, "I'll be
back later." He left the room, and asked Eunice, "Is any of her family here?"
"No. I guess her daughter was here part of the night."
"Well, when any of them come, tell them that Elizabeth has developed a
pneumonia despite the antibiotic. I hope this doesn't last too long. I can
talk to them if they have questions."
But they apparently didn't. He didn't hear from them that day, and when he
stopped by after clinic, Alan was there alone. Eunice had replaced the nasal
packing shortly after lunch, when Liz's nose had begun to bleed again. She
seemed comfortable. Alan beckoned him to step outside the room.
50
Struggling
"I'm sorry about my sister yesterday."
"I know. This is pretty hard for her."
"Thanks for understanding. How long do you think she has? I don't mean to
sound like that, but I want to be here, and the people at the office want some
kind of idea."
"Unfortunately, this could take days. Something new has to develop for her
to go quickly, but so many things could happen. Are you going to stay the
night?"
"No. She needs her rest. We'll take turns. Do you have any new orders?"
"No, there's nothing we can do to make this better right now. The nurses
can call me if there's any change."
"OK. She doesn't need another transfusion?"
"No, it won't help her. Good night, sir."
Alan looked at him sharply, lifted his chin as if to speak, stopped, then
simply said, "Good night."
. . .
On the morning of the fourth day, doctor Pettigrew saw from the nurses'
notes that Eunice had replaced the pack in Elizabeth's right nostril about four
hours after he'd removed it. She'd had intermittently a low fever off and on
since yesterday noon. It had been 100 degrees in the late pm, but since then
had been normal. Susan and Alan were both with her, Jim was pacing slowly in
the hall near the lounge.
When he saw Liz, he saw immediately that she seemed distracted. "Are you
uncomfortable?" he asked.
"Oh, doctor, I hurt so bad."
"Where?"
"In my chest." She put her right hand on her left chest.
"When does it hurt?"
"All the time."
"What makes it worse?"
"Everything."
"Such as?"
"If I breathe, or if I move my arms. It even hurts when I swallow. It's
terrible."
She was obviously in pain. He did not say, I'm sorry I caved in and
ordered that antibiotic; you could have been spared this; it could be over by
now. But he was sorry. A moment of weakness, of kindness to Susan. This was
exactly the sort of thing that he'd feared then.
Susan came silently in, sipping from the cup of coffee she had just filled
when she saw doctor Pettigrew walking down the hall. She looked wan. She was
uncharacteristically silent, and grimaced subtly when he told them about her
mom's pain. Jim and Alan came in behind her.
Listening to her lungs, he noticed that she wasn't getting air well into
the right lung. The left lung was rich with crackles, and he heard a subtle
rubbing there when she breathed. Her pneumonia had obviously progressed. He
placed his palm gently on her abdomen. It was soft, she showed no sign of
discomfort when he gently pressed in its four quadrants. He straightened.
51
Struggling
"This pain you're having is pleurisy. It's from your pneumonia. We can
make this pain bearable."
"I need something."
Jim and Alan and Susan all nodded, and Susan said, "Can't you do something
for her?"
"Yes, we can," he said. "Let me examine her a little more." During the
night the nurses had put on oxygen. The tubes were pointing up into her nasal
packing. "Is this helping you?" he asked.
"No, it's a nuisance."
"You don't have to wear it, then," he said, and slipped the loop of tubing
off her ears and hung it by the bedside. Her nose wasn't weeping this morning,
but he didn't dare remove the packing. She would surely just bleed again and
the idea of reinserting it seemed unkind.
When he finished he said to her, "Elizabeth, this will be over for you
pretty soon."
"Good," she said, and turned her face away from the crowd and closed her
eyes.
He stepped quietly out of the room, beckoning to the others. Susan's and
Jim's eyes were brimming. He said, "I'm sorry she's so uncomfortable. This is
what I was afraid might happen, but I'm sure we can make her comfortable. But
she'll get pretty sleepy. She won't very likely be interested in conversation."
"She hasn't been very interested for the last couple of days, doc," said
Alan. "We've all agreed she should have only comfort measures now." The others
nodded tearfully.
"I'm glad you agree," he said. "I should explain to you that I took off
her oxygen because it doesn't relieve shortness of breath, and the tubing is
often uncomfortable. Our bodies don't have and 'oxygen sensor,' it's the build-
up of carbon dioxide and acids, and stuff building up in our lungs that make us
feel short of breath. Morphine relieves that best, and we'll increase her
dose."
They had some questions about that, and how to relieve her pain, and then
he went and wrote orders, directing that her oxygen be discontinued and that her
oxygen-saturation levels not be checked. He doubled her morphine and wrote that
it should be used to treat shortness of breath.
As doctor Pettigrew walked to his office, he felt lightened: Alan and Susan
had finally quit struggling with Jim, all three were visiting with Elizabeth
together. Altogether it seemed as though the treatment had worked.
That afternoon Elizabeth removed her own nasal pack and had no bleeding
from her nose.
. . .
On the morning of the fifth day, doctor Pettigrew saw that she'd had no
fever, and her blood pressure was normal. How many more days of this would she
have to put up with, he wondered. Elizabeth was sleepier this morning, slower
to answer. Her breakfast was hardly touched.
"Good morning, Liz," he said loudly, "how are you this morning?"
"I'm OK. I have this terrible ringing in my ear."
"Your left one?"
"Yes."
52
Struggling
"How's your stomach?"
"It's better. I'm only sick when they turn me."
"I think that both the ringing and your nausea are from your left ear. The
inner ear might have a little bleeding, and this can cause both the ringing and
the dizziness." He immediately realized the explanation was pointless, but he
was helpless to suppress his explanation reflex. "How's your chest pain?"
"It's better. It only hurts when I swallow."
"Not when you breathe?"
"No, just when I swallow. It's not so bad."
"Anything else bothering you?"
"No, I feel a little better today."
But when he listened to her chest, her lungs sounded just as bad as
yesterday. She was breathing comfortably. He wrote no new orders.
Late during afternoon clinic, Eunice called him to say that Mrs. Murray had
passed a large maroon stool in the mid afternoon, and then had quietly expired
about an hour later. Another new problem, gastrointestinal bleeding. Maybe her
nausea had been from her stomach, after all.
There wasn't going to be room on her death certificate to list all the
causes of death. Death certificates, anyway, presume just one cause of death.
Cardiac arrhythmia caused by acute myocardial infarction caused by
atherosclerotic vascular disease caused by smoking, for example, with a tiny box
off to the side in which to list all "contributing factors not directly causing
death."
So gastrointestinal bleeding was what tipped her over, but it was pneumonia
that brought her down. Well, her Waldenstr”m's macroglobulinemia was the
ultimate cause of death; everything else was just a complication. Let
pathologists argue about the best order in which to list them; the death
certificate was just another form to file.
. . .
Jim saw Dr. Sampson and got his own bad news, as it turned out, the day
after Elizabeth's funeral. Amyloidsis... His heart muscle was heavily
infiltrated with rogue immunoglobulins that made it stiff and interfered with
its work. His arteries had no threatening cholesterol deposits; the coronary
arteries were clean. He had, simply, a worse variant of the disease that killed
his mother. His multiple myeloma could perhaps be slowed down by chemotherapy,
but there was no way to take away the amyloid protein deposits in the heart or
to keep new from being added to them. Maybe six months, guessed Dr. Sampson.
Doctor Pettigrew didn't see him again for about four months, while he
struggled against this disease with the oncologist and cardiologist. The clinic
notes they sent described inexorable loss of function and a continual struggle
with heart failure -- mainly frustrating, debilitating shortness of breath that
finally kept him from crossing the room without panting, and from laying down to
sleep. His life became circumscribed within a small triangle delimited by his
recliner, the bathroom and the kitchen table.
One morning when doctor Pettigrew came for rounds, he was notified that Jim
had come into the hospital during the night, while one of his partners had been
on call. He stopped by Jim's room. Jim had lost an amazing amount of weight;
his face was lean and leathery. He had an oxygen canula in his nose and an IV
53
Struggling
in his right arm. The covers were a mess. He was breathing about twice as fast
as normal. "Good morning, doc," he panted.
"Good morning, Jim, I'm sorry to see you here." He grasped Jim's hand.
They were both silent for a minute.
Then Jim said, "Oh, doc! I don't want to die! Don't let me die! I've got
so much to live for! Don't let me die!" He wept copiously, he sniffed and
wheezed and panted. He gripped doctor Pettigrew's hand much too firmly.
"I know you do," Doctor Pettigrew said, "and I'm really sorry this has
happened to you." He thought, Isn't this the man who lobbied so long and
consistently to let his mother go when she was at the same stage? He stood
silently and held Jim's hand for a few minutes, until he quieted. Then he
squeezed it, slipped his own out, said dully, "I've got to go make rounds," and
left.
A few minutes later, his partner, Barry Payne, saw him and said, "George, I
admitted Jim Murray last night with heart failure. I think this is it for Jim.
I talked to his cardiologist and to Tim Sampson. They say he's really end
stage."
"Yeah, Jim seems to feel that way, too. It's pretty hard on him," said
doctor Pettigrew. "I wonder if you could follow him for me. I don't think I'm
up to it."
13169 Words ·
54
Chapter 5
Peace
Hi, there! I'm Ted Samuels. I really look ... like a geezer this morning,
don't I? Lately I've been stuck ... in Fogey Hill Home full time. But today
... I'm stuck in Pendant Memorial Hospital. It's no picnic ... to get old, let
me tell you. They talk about those golden years ... as if there were something
great ahead, but believe you me ... there's nothing good about them ... and the
only thing gold ... is the piss in the pot. Just a minute here, I've got to
catch my breath...
Breathing, that's my problem lately. I'm 83, and there's nothing wrong ...
with my thinker. I'm a little hard of hearing, and I forget once in awhile. So
what? Some of these young folks ... act like I'm deaf and dumb ... like I don't
see ... what's going on. But I do, y'hear? These young folks ... haven't seen
half of life yet, and some of 'em think ... they know all the answers. Well,
let 'em have their way. My life's about over, and they'll find out soon enough
... what's in the golden pot ... at the end of the rainbow...
That handsome middle-aged woman ... over there talking to the doctor,
planning my life, is my daughter-in-law Rachel. She takes pretty good care of
me, watches over the bills, shut up the house ... when I had to go to Fogey
Hill. It's not really Fogey Hill, it's Haven of Ellsville Care Center. But
it's on a hill, and what the heck, you might as well be truthful. It's where
they put us fogeys ... when we get too old. God, it's expensive. About a
hundred bucks a day. It's like burning money...
It was the heart, y'know. Got plumb wore out, and it wasn't safe to drive,
and I lived all alone ... out in the country, don't y'know. Ruth, she was a
good woman, been gone these eight years now. It's no fun being alone,
especially out in the country. I didn't want to go the Home, was going to rent
one of these care-apartments. But the old ticker, it's been giving trouble ...
for about six months now, and everybody seems to think ... the Home is the place
to be...
I s'pose some folks like it. Every man's dream, y'know, to be waited on
hand and foot ... by pleasant, strong, well-fed young women. But at my age none
of that matters; I'm too old for it. The food's OK; better at any rate ... than
making it yourself, don't y'know. It's easier than taking care of myself, and I
found a few people here that I know. Didn't realize my friends ... had gotten
as old and decrepit as me...
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Good Death Peace
The trouble is my heart; it's weak, I guess. I used to get pains a lot ...
like my chest was in a vise; but not so much anymore. I get short of breath.
Most nights I take a spell, it's like I smother. The nurses at the home ... are
pretty used to it, hardly take any notice nowadays ... when I tell 'em. "Here's
a nitro, Ted," they say, and off they go to something else...
All winter I been in the hospital ... about every three weeks. I get
choked up at night, it's like I'll die, and I come in the hospital ... and they
put this oxygen tube in my nose, and change my medications around, and pretty
soon I go back to the Home again. I feel better for awhile...
Last night was pretty bad. My ankles, they've been swelling a bit ... in
the evening lately. I woke up about 2 o'clock. It was like there was a cow
sitting on my chest ... and I couldn't get a good breath. The night nurse didn't
come and didn't come. Then I asked for a nitro, and she had to go get her blood
pressure cuff ... and take my vitals ... and go check the chart to see if it was
ordered. Couldn't be much worse than that in Hell. Then she brought one, and
it didn't help much, and I had to go through half the rigamarole ... all over
again to get another one. I asked for oxygen, and she said it wasn't ordered
for me. They've got a tank right there, I've seen it. And it's the middle of
the night! Who's going to tell on her ... if she lets me use a little bit? Is
she scared to do anything, or does she just have to be ... the one in charge, I
don't know. Ticked me off...
So I told her to call an ambulance. No, she couldn't do that, she had to
call the doctor. I guess she must have, because after a long while ... the
ambulance came and brought me here. I don't remember much after that. I feel
OK now, just all wore out ... and tired as hell. All this talk ... tires me
out. Go check on my daughter ... and that doctor. Make sure they stick to
business, I can't hear them very well. Don't let them put me ... on any damned
machines. I just want to breathe...
. . .
Doctor Pettigrew was saying to Rachel, "I've not met your father before..."
"My father-in-law."
"Yes. Sorry. I've reviewed his record. He's obviously had a difficult
time the last six months or so. I see he's been in about every six weeks. He's
had some small heart attacks and about four months ago he had an admission for
heart failure."
"Yes, we moved him to the Center after that. He just couldn't take care of
himself well enough, and he lived alone in an old farmhouse in the country."
"He had an echocardiogram last admission. His heart is very weak and all
but a small part of his heart wall has been severely injured over time. His
blood pressure is low, but his brain is working OK. I think he's pretty clear.
He seems like an interesting, crusty old fellow."
"Yes, his specialty has always been irony. He's harmless. He tries to be
funny. He's very intelligent, but he likes to hide it. He looks weaker than
the last time he came in here."
"I'm sure you're correct. Medically the situation is this: He isn't a
candidate for any invasive measure like heart cath or bypass surgery, not just
because he's old, but because he's fragile and his heart is so weak. His blood
pressure is about as low as he can tolerate right now. If his blood pressure
56
Good Death Peace
drops lower, we could support it with medication, but that would make his heart
work harder and strain it and make his chest pain come back. He still has extra
fluid in his lungs and legs, but we have to be careful giving diuretics because
they can worsen his kidney function, which is already pretty bad. We're walking
a tightrope."
"He doesn't really want to live longer. He's told me that many times."
"I don't know him very well, but my judgment is that the most gracious
thing is to simply try to keep him comfortable. We won't neglect him; we'll
treat whatever gives him distress. But I think we should take him out of the
intensive care unit and go to a regular room without all this monitoring and
just watch over him."
"I think you're right. I'll go home and get a few of his things for him."
. . .
By late morning Ted had arrived in a regular room, meeting a new nurse.
"Hi, I'm Ellie, and I'll be your nurse for this shift. I wonder if I could ask
you a few questions now that you're feeling better. We have to complete your
data base."
"Sure."
"What was your occupation?"
"I was maintenance man ... down at the high school ... for about fifteen
years ... and then I retired. I been working part time there ... until about
five years ago."
"What did you do before that?"
"Well, Ruth and I farmed ... out west of town ... for about thirty years.
Then we had a couple of bad years, all expenses and no prices. I sold the herd
... when the job at the school opened up ... and that was that. Ruth had a job
at the bank, and when I added everything up ... she was working full time ... so
I could spend it all ... breaking my back in the barn. So I took the job at the
school. Forty hours a week, and I still had time ... to put in a few crops."
"Do you still live on the farm, or did you move to town?"
"Well, I'm at Fogey Hill right, now but I druther be at the farm. I oughta
sell it ... but I hope maybe one of the kids ... will want it some day. Rent
out the better land ... to keep it in tillage. Pays the taxes. I'm really worn
out right now."
"How long has Ruth been gone?"
"It's been about eight years. Cancer took her. Colon cancer. It ain't
easy being alone."
"How has it been for you at the nursing home?"
"Well, I had to go in ... after my heart ... got bad last fall. I needed
help, and my house isn't good for me: the bedroom and bathroom are upstairs ...
and I have a wood furnace in the cellar."
Then Ellie veered off into the inventory of whether he had headaches and
how bad was his hearing and when did his bowels last move and could he pass
water OK; he tired, his interest flagged, and his answers shortened.
When Rachel came back with Ted's things, Ellie said, "Ted's a character,
isn't he? What was Ruth like?"
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Good Death Peace
"Well, they weren't much alike. He's a teddy bear under his grumpiness.
She was a diplomatic woman with a backbone of steel. She was intelligent and
industrious. One of those people who just seem to be going all the time."
"How has he done without her?"
"He did pretty well until his heart started giving him so much trouble.
Mother was good-hearted, but she was sharp, one of those people who can always
think of a better way to do a thing than you've done it. And she usually let
you know it. She meant well, but always getting correction and not praise is
pretty wearing. Her kids never visited as much as she would have liked. I
enjoyed her, but I didn't have to live with her, and she didn't visit us because
she was so busy at home. When she died it was hard on Ted, but after he got
over it, he sort of bloomed. If he'd been younger, he might have started
traveling."
"Or found someone else."
"Oh, I'm not sure he didn't. Somehow he and an old sweetheart, I think
from high school, got in contact with each other. They seemed pretty thrilled
with each other, but they both had houses, and neither wanted to move. So they
just stayed friends."
"He's pretty easy to watch over, and he's such a character that it's fun.
It would be harder for my husband because his job is so demanding, and the other
kids live quite a distance away."
"Does he have other children?"
"I'm his daughter in law. He has two sons, my husband Roger and Harry, who
lives in Boston; and a daughter Mavis, who lives in Denver."
"Will they be able to come and see him?"
"I hope so. I'm trying to get through to them. The kids were never close
to each other. Something happened between Harry and his dad, and Ted's wife and
their daughter Mavis had something that kept them apart. And for some reason
Ted wanted me to have power of attorney instead of my husband Roger."
"Well, I wish you the best. I hope it all works out for everyone."
"Thanks. I do, too."
There was no point in giving Ellie the whole story. Rachel herself didn't
know all of it, even what might have happened between Roger and Harry; Roger
never talked about himself and Harry. Once, years ago, she heard Ted complain
to Roger about seldom hearing from Harry, and Roger had just said, "He's got a
chip on his shoulder for both of us, Dad." And had closed the subject.
Roger had distanced himself from Ted for peace of mind. Ted had always
been pretty critical of him, which to Rachel seemed more habitual than
conscious, but it was hard on Roger anyway. For some unknown reason, Ted was
only critical with his own children, so he and Rachel got along fine. But Roger
couldn't say or do anything without a sardonic remark from Ted. Since Ted had
gone into the nursing home, he'd stopped being critical. Interesting.
Years ago, Roger had tried to farm and had failed. He had bought Rachel's
grandfather's farm soon after they were married, and really loved the work. But
he always seemed to be on the wrong side of farm prices. It was years later,
after they had moved to the city and made new careers away from that stress,
that Rachel understood what had happened. Roger was too cautious and careful.
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Good Death Peace
He'd wait until he was sure corn prices were truly rising, then he'd plant corn.
He'd wait until the hog markets went high before he'd buy feeders. And usually,
by the time harvest came or the pigs were grown, the market would bottom. With
retrospective clarity, she understood that his mother's perfectionism made him
tentative and his father's irony sowed doubt. Away from them, in the city, he
became more decisive and made a good career in real estate.
Exactly what kept Roger and Harry apart, or Ted and Harry, she didn't know.
About Mavis she was a little more sure. Ruth had kept unrelenting pressure on
Mavis to do better, and after Mavis got married, she escaped when her husband
was transferred west. Rachel had rarely seen Ruth angry or unpleasant with her;
there was simply nothing Mavis could do to get a word of praise. Ruth always
had a suggestion for further improvement, greater efficiency, more economy, or
better quality. But scant praise. Maybe there was something Ruth had done.
One never knows about the lost histories of the private lives of families; in
any case, Mavis had seemed happy in Denver.
. . .
During the next couple of days, Ted lost some of his zip. He didn't eat
much, and when Ellie tried to encourage him, said he had no appetite. The next
morning Rachel arrived early and lay in wait for the doctor. Eventually he came
rushing in, and after he'd examined Ted, Rachel said, "Could I talk with you for
a minute now that you've seen him?"
"Surely. I'm a bit behind, but I'll take what time I can."
They went into the hall, and Rachel said, "I've noticed Dad seems to be
going backward."
"Yes. We really haven't gotten any more fluid off - his weight hasn't
decreased - but his kidney function has worsened rapidly. And he had a long
spell of chest pain yesterday that took some time to relieve, and since then his
blood pressure has been lower than ever, in the 70's sometimes. He seems to
tolerate it remarkably well."
"What do you mean by that?"
"Well, he's not having constant angina and he's not confused. The rapid
loss of kidney function and our inability to get water off are surely related to
his low blood pressure and weak heart."
"How long do you think it's going to be for him?"
"A short time. It could be any moment; or he could rally and last several
days. I'm a poor prophet; been wrong too many times to try to be exact."
"I just wanted to see what you thought. I've called his kids, and they
should all be here by this evening. Thanks for your time."
"You're welcome. Have the nurse contact me if you see he needs anything we
haven't thought of."
"Thanks. He does seem awfully short of breath sometimes. One of the nurses
mentioned they might ask you for a morphine order."
"Yes, they did. It relieves shortness of breath really well, and it'll
help him rest."
Rachel turned and went back into Ted's room, pulled the upholstered chair
up to the side of his bed and sat quietly. Ted seemed to be sleeping. After a
few minutes, he opened his eyes, smiled slightly, and turned his right hand palm
up. She reached over and held it. They were silent for a long time. His eyes
59
Good Death Peace
were closed; he might have been asleep, but each time she moved her fingers
slightly, his responded. She wanted to pray, but didn't know what to say.
There seemed to be nothing in particular to talk to God about, nothing to ask
for. What do you say? "Well, God, here he is. He's put in a long shift here
on earth. Hope you're not too hard on him when you get him, because he always
meant well."
She grasped his hand a little more firmly. He said, "I'm about done,
Rachel."
"I know. It's OK for you to go, Dad."
"I appreciate you, Rachel."
"I love you, Dad. I'm going to miss you."
"Are the kids coming?"
"Yeah. The kids. And some of the grand kids. And some of the great grand
kids. Everybody who can come will be here by tomorrow."
"I don't know if I'm going to wait or not. I'm really tired."
"It doesn't matter. It's not as if they haven't had their whole lives to
visit you when they could."
"What?"
"It's OK. You don't have to try to stick around. If you're here, you're
here."
"Well, I'm glad you're here. You've always been a help to me."
"I'll stay with you, Dad, until Roger comes after work. You won't be
alone."
. . .
The next morning when Rachel got there, everyone had indeed arrived. There
was a tense little group gathered in Ted's room and at his doorway. Rachel
found Mavis at the nurses' station grilling Ellie.
"Why is Dad's blood pressure so low? Is it his medications?"
"No, he has a weak heart. He is getting several medications, but we're
monitoring those to make sure he isn't having any side effects."
"What are you doing about it?"
"Well, we're trying to make sure he's comfortable."
"Why isn't he in Intensive Care?"
"Because he doesn't need any of the services there right now."
"Why aren't you monitoring his heart?"
"Because the decision was made, I think by Mr. Samuels and Dr. Pettigrew,
not to resuscitate him. There wouldn't be any purpose in it."
"Why hasn't he been transferred to a larger hospital, with more
facilities?"
"What do you mean?"
"Why hasn't he had angioplasty?"
"I guess you'll have to ask the doctor that, ma'am; that's out of my area."
Rachel said, "Mavis! I'm so glad you could come. I see Harry's here, too.
Let's all go to the lounge and sit down for awhile. Would you like some
coffee?"
Roger and Rachel and Harry and Mavis went to the lounge, and sat with
coffee while Rachel did the best she could to describe what the doctors had been
telling her. Mavis and Harry were persistent.
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Good Death Peace
"I just don't understand why more isn't being done," Harry said. "Does
this doctor understand what he's doing?"
"I think so," Rachel said. "Ted's 83, Harry. He's really aged
tremendously the last year or so, and his heart's failing, and his kidneys too.
He's had a good long life, and now he's reached the end."
"That's easy for you to say," said Mavis. "You and Roger have had all the
time you want with him. I don't see why they can't work to keep him alive a few
weeks longer so that we can enjoy him, too. Instead of helping him get better,
they dose him up with morphine. It's euthanasia, that's what it is!"
Rachel wanted to say, You both have had lots of chances during the last 40
years to spend time with him. Where were you then? But instead, she just said,
paraphrasing Dr. Pettigrew, "It's to the point that the things that could be
done to keep him going would simply be unkind, and might not prolong his life at
all. It wasn't possible to give him relief without morphine. We've all got so
little time with him and with each other, let's try to enjoy it and make the
most of it."
She looked at Harry and then at Mavis; and then at Roger. "I'm just the
daughter-in-law, but Ted's my friend. He's your dad. I know he loves you, more
than he lets on. Tell you what. Instead of us all going into his room, like a
committee, why don't you each go in to see him alone, one at a time, and stay
awhile. This is a comfortable place; the rest of us can stay here and talk, or
read the newspaper, or watch the TV."
Harry said, "Sure. I'll go."
Rachel said, "He's worn out, and he tires easily. Just say something kind,
and wait for him. He'll talk to you."
Harry walked slowly down the hall. Mavis looked at Roger and said, "It was
hard living with Mom and Dad. And it's hard to see them go."
"Yeh," Roger said, "Sometimes they were pretty hard on us, but they meant
well by it. There weren't any books on child-rearing in those days. They just
took a good guess and went with it. Sometimes I've wondered what it was like
for them with their own parents. Anyway, I put it behind me. Dad and Mom made
mistakes, but they gave us a lot of care, too. It could've been worse."
"You've lived a different life with them," Mavis said. "I lived so far
away, nothing much changed from year to year. I guess I just assumed that some
day I'd be able to come home and everything would be fine. But it isn't going
to be. Mom's been gone eight years, hasn't she?"
"About that," said Roger. "Children are supposed to grow up and go away.
We did, in our different ways. You don't have to come back and fix anything.
What's past is past, what's done is done. It's nice you could come."
"Thanks," said Mavis.
Harry walked slowly down the hall and cautiously slipped into Ted's room.
He seemed to be asleep. There was a chair by the bed, and Harry quietly sat
down and looked at this old man, lined and stubbled face, watery eyes, crusty
spots on the skin of his neck and cheeks, some dark and some pink, shrubby white
stiff hairs in each nostril, bushy grey eyebrows. This was not the father who
lived in his memory, this was a sagging, worn, dessicated caricature. As he
watched, he realized that he could hardly see Ted breathe.
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Good Death Peace
After a few minutes Ted stirred and looked at Harry. "Oh. You're here."
"Yeh, Dad. How are you doing?"
"I'm OK, Harry. They take good care of me. I'm about done, Harry."
"I know, Dad."
"I'm proud of you, Harry. I don't know if I told you that before."
"It doesn't matter, Dad. I love you. I'm sorry I live so far away."
"Well, we were pretty stern with you, boy. But you turned out all right.
Better than I expected."
"Thanks, Dad."
"Me and Ruth, we made ... a lot of mistakes ... with you kids. You turned
out OK anyway. God saw to it, and when I'm gone, you just put yourself ... in
His hands."
"Ok, Dad." Harry took Ted's hand and held it gently. The old man drifted
off to sleep again, and after awhile Harry slipped away, back to the others.
The other two each went to their dad. Ted wasn't sardonic anymore. Was it
the morphine, or was it too much effort to hold on to the old veneer, or had he
changed? Or had he not changed? Does the reason matter? Most people die
without reconciliation; Ted was an exception. He talked to Mavis and to Roger
as kindly as he had talked to Harry, and said to each of them simply, "I love
you. Thank you for coming. I won't be here long, and I want to ask you to
forgive me for the foolish and wrong things I've done."
In turn, they each held their father's hand, and spoke kind words of
forgiveness, and felt absolved, and wept tears of remorse and loneliness and
relief.
Rachel read, and talked, and guided them to the cafeteria and back. She
watched with pleasure as the tension among them slowly relaxed that day and the
next. The three talked together for the first time in decades. Later, at home,
Roger said, "I never knew what I did to offend Harry, and I still don't know,
but it's clearly water over the dam. I'm glad we can talk again."
Rachel said, "Maybe, like your mom, it wasn't anything you did, it was what
you were -- and what he was."
Ted stayed around, for three more days, getting weaker and more tired.
After he had made peace with his grown kids he saw about half the clan, briefly,
and then he died.
4283 Words ·
62
Chapter 6
Disparate Kindness
A short round man, of indeterminate late middle age, struggled to right
himself, to sit on the edge of his bed, in order to greet the young nurse who
had just come into his room. A small, triangular, clear green plastic mask hung
from his neck by a black elastic cord. It tethered him by a pale blue
corrugated plastic hose to a cream-colored rectangular box the size of a
portable refrigerator that hummed quietly but obtrusively at the head of his
bed. The mask scratched against his grey stubble as he moved.
He wore a hospital gown, but he was not in a hospital. His was the only
bed, and he had taken possession of the room: between his bed and the window,
where a second bed might have been, was a tall bookshelf full of books. Those
with visible covers had pictures of warplanes, or warships, or tanks. On the
wall next to the door was a bulletin board on which were pinned snapshots of
people, some of whom were himself at various ages. Under the bulletin board was
a wooden chest of drawers that was clearly not institutional property. This was
the Hatchville Center of Care nursing home, and this was his room.
He tugged his gown out from under his left buttock, where it had been
trapped by his turning, and spread it across his thighs, covering a catheter bag
half full of golden urine and its tubing. "Damn!" he said quietly.
"Let me help you, Alan," she said.
"I'm OK. There's too much stuff here," he said.
"Here," she said, "let me straighten some of these things for you," and
quickly freed and straightened his bedding and re-tied his gown. "I don't know
if you remember me. I'm Jeannie. I was your nurse Monday, and I'm new here.
You're Alan, aren't you?"
"Yes, I remember you. Do you have my pills?"
She gave him his pills in a little white paper cup, and a glass of water
with a flexible straw. He tossed the pills back, and as he chased them, the
water in the glass descended an inch. He looked at Jeannie contemplatively.
She was worth looking at. Her young body burgeoned inside her scrubs,
pulchritudinous in the plain green cotton. Dark, ruddy hair tumbled over her
shoulders.
He said, "I don't like this catheter."
"They're pretty inconvenient," she said, "is it bothering you?"
"Yes."
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Good Death Disparate Kindness
"Maybe you're due to have it changed. I'll check your chart. Does it
hurt?"
"No. I just don't like it."
"Here, let me check it," she said. She swung his door shut, put on plastic
gloves, and lifted his gown. The urine in the bag was clear. From his
wrinkled, deflated penis sprouted a tan rubber tube. There was no blood at the
tip of his penis. She quickly retracted his foreskin slightly. There was no
crusting or pus. As she bent to check it, he gazed down at her scenery and
leaned back slightly.
She covered him as she stood up. "Does it often hurt?"
"Yes. Sometimes. I don't like it."
"Well, there is something else that could be done. Have you ever heard of
a suprapubic tube?"
"What's that?"
"Instead of putting the tube up your penis, the surgeon puts it right into
your bladder in the lower part of the belly. There's a little hole in the skin
then, and when the tube is changed, we just slip the old one out and the new one
in."
"I want that."
"We'll ask the doctor if he maybe won't refer you for that. I think you'll
be more comfortable that way."
She changed the urine bag hanging from the bed rail for a smaller leg bag
and strapped it to his thigh. "There, you're ready to take a walk as soon as
you get dressed."
"Can you help me?" he asked.
"Sure. Here's your sweat pants." and she helped guide the pant leg over
the bag and straps. "Let's take this mask off and let you go for a little
walk."
"Thanks," he said.
She lifted the elastic from his neck and laid aside the face mask. She
watched carefully as he slowly leaned forward and gradually transferred weight
to his feet. She put out a hand as if to help him, but he stood ponderously by
himself, and then shuffled slowly over to his bureau and opened a drawer and
picked out a shirt and began putting it on. His balance was safe even though he
was weak and slow. Jeannie left to pass the next patient's meds.
. . .
Beth Nordquist, the nursing supervisor, needed an early break. She slowly
stirred a little sugar into her coffee in the deserted cafeteria of the Care
Center and watched the diaphanous serpentine vapor waft up from the swirling
dark coffee, letting her mind relax. After reviewing a dozen charts, her eyes
were achy and she felt tired. She had been preparing for the day's patient
rounds with Dr. Richards, trying to make sure that all the orders were up to
date, reviewing the staff notes to make sure that she was aware of any new
problems with each patient, and that all the lab results were charted. It was
tedious, but to have everything tied up and in order was satisfying and
professional. And it would be shameful to have no answer to an obvious question
from the doctor on rounds. The burdens of being supervisor. It had otherwise
not been a difficult morning. No aides had called in sick, no incidents with
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Good Death Disparate Kindness
the patients, only a few phone calls. Two new admissions would be coming late
in the morning or early afternoon from Hatchville Memorial Hospital. She began
thinking about how to divide staff assignments for the afternoon.
Jeannie Foster came in for her break, walking briskly as usual. She had on
unfaded green scrubs this morning that made the highlights glisten in her dark
auburn hair. Jeannie must work out, Beth thought; her legs were tightly muscled
and she was stocky but very trim and energetic. Beth felt dumpy and overweight.
Jeannie was a new RN, just a year out of school. She was intelligent,
enthusiastic and energetic. She came to Beth's table with her coffee and
paused. "Mind if I join you?"
"Not at all. Please do."
"You seem preoccupied."
"Oh, just thinking about the rest of the morning. How is it going for
you?"
"I'm getting used to things. I think I finally know where most everything
is, so I don't have to ask for help quite so often."
"You're doing fine. We're glad to have you here. How are you doing with
Alan?"
"I wanted to talk to you about him."
"OK. What's happening?"
"He isn't doing very well. He's new to me, so I don't really know how much
he's changed. I could use your advice. His O2 sats are down in the 80's most
of the time, and he won't wear his nasal BiPAP. I don't hear anything in his
lungs, but he sometimes seems pretty short of breath. Can you explain his BiPAP
to me?"
"Well, I can try. PAP stands for 'positive airway pressure,' and it pushes
air in when he inhales. I don't know what 'Bi' stands for; I guess it doesn't
resist when he blows out."
"I know, by why Alan?"
"Oh. A couple of years ago, he developed sleep apnea, or at least we
discovered he had it. Doctor Pettigrew sent him to a specialist and he came
back with this funny little mask that goes over his nose at night. He doesn't
really like it, but he feels a lot better when he uses it, so we try to
encourage him to keep it on. It put an end to his snoring, too."
"But now he's supposed to use it during the day..."
"I guess that's for his heart failure. He has chronic lung disease and
right heart failure, and I guess it's supposed to help. He doesn't wear it very
often, though, that's for sure! How is he doing otherwise?"
"His blood pressure is OK; it's about 95 over 30, and his pulse is normal.
He isn't febrile. He complains about his catheter. He says he wants it out,
but when I ask him if it's painful, he says 'No.' Usually he seems pretty
appropriate, but sometimes he says things that seem right, but just don't hold
up."
"That's Alan. He'll tell you that one of the aides wheeled Bonnie off to
therapy, and if he's having a good day, it'll be true, and if he's off, it'll
have no connection to reality.
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"He's been here a long time," continued Beth, "probably thirty years. When
he first came, he would sometimes get violent, and we'd have to ED him2 to the
psych unit, but over the last few years, he just gets grumpy and on those days
the aides are real careful with him. I think he's probably pretty intelligent.
There's a rumor that he had some college, and I've heard that years ago he
killed someone. I suppose that's why he was put up. He was on huge doses of
antipsychotics for years, partly because everyone was so afraid of him, and then
one day doctor Pettigrew said, 'I wonder if he needs all this stuff anymore,'
and tapered him way back. He's been a lot more active and alert since then, but
he's gotten psychotic a couple of times, too. Overall, it's been better for him
to have less medication.
"Does he have any relatives?" asked Jeannie.
"He has two sisters," Beth said. "They come to visit him two or three
times a week. I'm sure you'll meet them soon. They always come together;" she
chuckled," maybe for protection -- and if he's calm and in good spirits they'll
often take him home for lunch or dinner. But if he's in a bad mood of course
they don't. I'm sure they've seen him at his worst."
"What are they like?"
"They're really quite remarkable," said Beth, "for their equanimity.
They're very quiet. They ask questions of staff about how he's been doing, and
what treatments he's getting and what they're for, but whereas some relatives
ask as if to challenge or doubt what is being done, they just seem truly
curious. They seem completely unexcitable. I'm sure you'll meet them soon."
"And he is excitable?"
"Sometimes. You just never know from day to day how Alan is going to be.
Most days he's pretty easy to deal with, but on other days he can be pretty
difficult, and we have to negotiate with him to get him to cooperate."
"Does he get violent with staff?" asked Jeannie, suddenly tense.
"Not for a long time," said Beth, "and he gets quiet and grumpy for awhile
first. Usually we notice that and get a medication adjustment before he gets
out of hand.
"He's really been a pretty good resident most of the time. But every time
social service has thought he's ready for a community placement and they've
started working on discharge planning, he's had a psychotic break. I don't know
if he can't stand the stress, or if it's just chance. But this has been his
home for thirty years, and he's really part of this place. Once, years ago, he
had a little romance going with a female resident, and they both were being
prepared for community placement, but they both became psychotic just before
they would have left."
"What happened to her?"
"I don't know. She never came back. She had been, I think, a placement
from another county, and probably went back to her own county after that
hospitalization. Alan never mentioned her after he came back. We don't know if
he forgot her or whether he just didn't want to bring it up.
-----------
2. ED: a bastardized transitive verb derived from Emergency Detention.
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"Sometimes he acts almost as if he were part of the staff, trying to
resolve issues between residents. And sometimes he goes overboard. A few years
ago we had a new resident who could get pretty aggressive. One day when Alan
and some other residents were standing in the lunch line, this man pushed his
way into the front, getting physical with a couple of the other residents and
knocking one down. Alan was there, and he just threw that guy down on the floor
and stomped on his head. He was a bloody mess. We had to send him to the
hospital, and of course he never came back."
"I would never have thought he'd be capable of something like that."
"Oh, it's not very often," said Beth. "He's had kind of a rough time the
last couple of years. He used to smoke until three years ago. Then Dr.
Pettigrew told him he could die of COPD and smoke, or live and not smoke. So he
quit, but of course his COPD has progressed. That has really put a leash on
him. Then we found out that he has sleep apnea, and he was prescribed the nasal
BiPAP. His O2 sats are a lot better when he uses it, and he doesn't have as
much edema, but the mask is pretty uncomfortable for him and he refuses to wear
it for hours at a time.
"No, I can hardly get him to keep it on for any length of time."
"Right. He knows exactly what he wants. Sometimes he's amenable to
persuasion, sometimes he's not. At any rate, he never had any urinary
complaints, but about two years ago we thought his bladder might be distended,
and he had 1200 cc's of residual urine."
"Wow! I thought the normal bladder capacity is about 600 cc."
"Yes, I was taught that, too. But when we catheterize a man with
obstruction, we usually get a thousand or more. The bladder stretches! Anyway,
it turned out that he had a neurogenic flaccid bladder for some reason. We did
residual urines for weeks, hoping that the bladder would contract, but it never
did. He hated getting cathed. He also had developed renal failure, so the
doctors told him he couldn't afford to let his bladder be distended, and he
finally let us put in a permanent catheter. He tolerated that pretty well, with
continual grumbling. He asked to see Dr. Pettigrew privately one day, and it
turned out that his problem with the catheter was that it hindered masturbation,
and he had decided that this was part of a communist conspiracy to sterilize
Western men and prevent them from experiencing pleasure. I don't know what was
said, but Doc just arranged to have us leave it out for a few hours when we
changed it each month, and Alan seemed pretty content with that. If it gets
uncomfortable, we change it early, and treat infection, and otherwise it just
seems to be a tolerable nuisance."
"Well, maybe I should change it today. But wouldn't it be a lot easier if
he had a suprapubic tube? I suggested it to him today, and he seemed to like
the idea."
"We can ask. That's up to the doctor. The trouble with catheters is that
they're uncomfortable to place and remove; the trouble with suprapubic tubes is
that they leak and the urine gets infected a lot easier. People who think
they're a good idea aren't always happy afterward. I'll add him to doctor
Richards' list today."
"Thanks," said Jeannie. "I think more could be done for him. Maybe doctor
Richards will be a little more aggressive."
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Beth and Jeannie walked back to the ward together. Beth remembered being
young herself, and on fire to change things, to save her patients, to see
everything being done right and well. The thousand little defeats of twenty
years of nursing practice had not abolished her hopes of doing well for her
patients or her love of professionalism, but naive idealism was shot dead. You
did what you could, you tried to help others understand and do, and then you
went home late and dealt with meals and housework and children and school and
husband and the dog. Jeannie was a really fine young nurse, keenly attuned to
physiology and technology and the rituals of nursing assessment and practice.
She wasn't as quick to notice that a patient's blouse was missing a button, or
that they were cold or lonely or upset. But her nursing assessments were
reliable, and she had good clinical judgment.
Beth asked Dr. Richards to take a look at Alan when he came for rounds,
mentioning Jeannie's concerns. He didn't usually take care of Alan, so he
studied his chart for a couple of minutes, flipping through pages; then he
strode down the tall to Alan's room, lean and tall, Beth jiggling hurriedly
along beside him. "Alan wants to talk about a suprapubic tube, doctor. I
wonder if you'd discuss that with him, and see if a referral would be
appropriate. And I'd appreciate it if you'd address his respiratory status. He
won't wear his BiPAP much, but he does so much better with it. Maybe it's
affecting his heart failure, I don't know."
"Sure. Let's see him. Did you bring his chart?"
Jeannie was working with Alan when they got there. They greeted her, and
she stepped aside for Dr. Richards. Alan was on his bed, the head raised about
a foot, a little bean-bag man, pale and round and flaccid. His hair was crew
cut; he had a little sandy grey mustache; he was wearing mustard-colored sweats
that didn't meet at the equator. An umbilical hernia the size of an avocado and
faintly purple protruded from his middle. His skin was dry and flaking
slightly. In his left hand was a length of clear corrugated plastic tubing
running from a machine the size of an air conditioner to a triangular mask,
strapped to his face by a black elastic band that went over his ears and behind
his head.
He was in a private room; no one had ever been willing to endure rooming
with him for long, even when he was not psychotic. He was cloyingly interested
in every detail of his roommate's existence, and had an opinion on everything.
His was the only room in the nursing home with a bookshelf; on it were a few
family pictures and some knickknacks, and a half-dozen books on war, including
Jane's Ships. Jeannie stood, poised, watchful, and silent, at the side of the
room.
"Hi, Alan. I'm doctor Tom Richards. Mrs. Nordquist asked me to check on
you this morning. How can I help you?"
Alan looked at him, then at Beth, then back. Then he said, "I want to get
rid of this tubing."
Dr. Richards said, "I guess you don't like that mask. I know it's
uncomfortable, but without it you stop breathing during the night. I know you
don't like to wear it. And you don't have to. But your heart will be stronger
if you use it. It's your choice. Is there anything else?"
"I want this catheter out."
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Good Death Disparate Kindness
"Does it hurt you?"
"No. But it sometimes hurts when they change it. I don't like it."
"Well, I see from your chart that we've tried to do without it before, and
your bladder just doesn't drain without one. And unless your bladder drains
properly, your kidneys will fail. And they're not working very well right now."
"The nurse said that they can put a tube in through my stomach."
"Yes, that's called a suprapubic tube. You still have a catheter, but it
will go into your bladder through the abdomen just above your penis instead of
through your penis. It is a surgical procedure."
"I want it."
"OK; you'll have to see a urologist about that. I think you've seen doctor
Schultz. We can arrange for you to see him to talk about it. Here, let me
listen to your lungs and see how they sound."
Dr. Richards listened to his chest, and checked his abdomen. He said
"Sounds pretty good, Alan, just a few crackles. I'll review your medications.
Have a nice day."
"Thank you, doctor," said Alan.
Dr. Richards said, "You're welcome Alan." He turned toward the door,
nodded to Jeannie, and he and Beth went off to finish rounds.
. . .
The next morning Beth sat again at break, sipping her coffee, wondering how
her daughter's struggles with freshman English were coming, when Martha Leeson
said, "Mind if I join you?"
"Not at all. Sit down. How's the morning going for you?" Martha was in
her fifties, rail-thin, and quiet. She was not only shy but skittish and easily
intimidated, especially by men. But she was a solid clinical nurse, and Beth
really depended on her.
Martha had Alan this morning; Jeannie was off. Both were good nurses that
Beth could trust, but they were at opposite ends of a spectrum. Jeannie was
young, full of spit and vinegar, freshly full of knowledge about medications and
physiology and up on the latest technology. She always had assessed her
patients completely: blood pressure, respirations, temperature, oxygen
saturation, dietary intake. Martha's training was far behind her; in fact, she
sometimes commented on her frustration with the flood of new medications and the
difficulty of learning about them. But she was extremely sensitive to her
patients, and genuinely cared about them personally. If someone split a nail,
she trimmed it; if a back itched, it got scratched. She was quick to notice a
change in condition, and to report it. She got to know their families. And she
was not a fan of high technology.
"Alan concerns me. He's really failing. I know his blood pressure is
usually low, and his sats are always up and down. But he's just not himself. I
know Dr. Richards saw him yesterday, but Dr. Pettigrew is coming today, and he
knows Alan so well. I wonder if you could ask him to take a look at Alan and
see what he thinks."
"Sure. I'll put him on the list. Dr. Phil has a big list already, and
he's going to groan and complain like he always does, but he needs to see Alan."
"Another thing, Beth. He's talking about a suprapubic tube. I don't know
how that idea got into his head. I'm sure he has no idea what that is or what
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Good Death Disparate Kindness
it will be like. Putting one of those in will be like jumping from the frying
pan into the fire for Alan. He doesn't really have any pain from his catheter,
he just doesn't like the idea of having one and he hates the nuisance of having
to keep watching to make sure the tubing doesn't catch on anything when he
moves. I know it can be uncomfortable to change it, but I use viscous lidocaine
when I put each new one in. If he gets a suprapubic tube, there's still the
tubing and the cath changes, but he'll hate the leaking and the extra skin care.
And the way he's looking right now, a procedure is going to be real hard on him.
I really don't think it's going to make his life any better."
"Well, let's see what Dr. Phil says. He'll talk to Alan, I'm sure."
"Thank you. By the way, how's your daughter doing at school?"
. . .
Later that morning Dr. Pettigrew came, behind schedule as usual, hurrying
down the hall to the nursing station. He was a short, incongruous assemblage of
body parts: thin legs, a small pot belly, a small nose in a broad face, a shock
of pale, slightly red hair that probably had been combed when he began the day.
He was grumpy, but funny; Beth had known him a long time before she could read
him reliably. He kept up a running commentary on all the foibles and
shortcomings in every situation, which was ironic and funny most of the time,
though if he was tired or angry he sometimes hit wrong notes and soured. But
under his crust, he was insightful and sometimes surprisingly kind, and she
could count on him to do the right thing.
After all the forms and dictation were signed and the brief, easy questions
taken care of, Beth told him about their concerns about Alan, and the debate
about whether he should have a suprapubic tube. They walked down the hall to
Alan's room. Alan was lying in bed with his BiPAP mask half on and half off.
"Hey, Alan! Good morning," said Dr. Pettigrew. "Seems like you're having
a rough time."
"Yeh, doc. I'm really tired."
"Let me listen to your lungs," said Dr. Pettigrew, and helped Alan to sit
while he moved his stethoscope from place to place across his back and chest.
He pressed a finger into the skin of Alan's ankles and palpated his abdomen.
Then he knelt down by his bed. "Alan, I hear you want to have CPR if you die."
"Yes."
"What is CPR?"
"I don't know."
"Well, basically it's a try to revive you after you die. It's better to
try to keep you alive first. You don't like this mask, do you?"
"No."
"Do you want to live?"
"Yes."
"Then you need to put up with this mask. This is CPR for you right now.
If you put up with it, you'll live; if you take it off, you'll die. I'm sorry
this is how it is, but you need it right now."
. . .
Later, back at the nursing station, Beth asked, "You didn't talk to Alan
about the suprapubic tube."
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Good Death Disparate Kindness
"No. What a crazy idea. Here's a dying man, and somebody's thinking about
doing a procedure that will do nothing but make him less comfortable and harder
to manage. He's getting into respiratory failure; he's in heart failure. His
kidney failure is getting worse, mostly related to his lungs and heart, not his
neurogenic bladder. If we really wanted to prolong his life, we should put him
in the hospital and put him on a vent and get him diuresed and manage his acid-
base status. Then he'd come back here and in a few days he'd be in this
condition again.
"He has no idea what he's asking for. He thinks he wants CPR, but he
doesn't have any idea what it is. He can ask for it; we can try to do it; but
if he had a cardiac arrest there's no way CPR would be successful. His heart's
too flabby; he's too hard to oxygenate; his kidneys would fail completely. His
brain isn't working very well right now; it would be worse after a
resuscitation. He's had nothing but suffering the last few months. The BiPAP
has kept him going lately, and I can't say that it's made his life happier.
"Social service thinks we have to let patients decide whether they want
CPR, and to give a it try if they say they do. What a crock. What they think
is that DNR means Do Not Respect, that we won't pay attention anymore. People
don't know that CPR means to try to revive the dead, that it doesn't work on
these sick old folks, and that if death happens, it's the natural thing. So we
have to offer him CPR if he wants it. Well, excuse me; no, we don't. I'm his
doctor, and the law does not require me to give futile or inappropriate care.
CPR would be futile and inappropriate for Alan, and I'm not going to do it.
"But I can't write the damned DNR order because social service thinks we
can't do it without the patient's written permission, and Alan won't give that
because he isn't able to understand all the medical issues that go into the
decision. It would be ludicrous to even attempt the conversation with him, like
trying to speak Italian to a Korean. He has no ability to understand and
agree."
Beth asked, "Are you going to talk to his sisters?"
"Well, if they want to, have one of them call me at the office. But I
suspect they understand the situation well enough. Alan is competent, so they
don't have any legal say, and technically I can't even tell them what's
happening to him without his permission. Although I'm sure he wouldn't mind."
"What about the order to see Dr. Schultz about putting in the suprapubic
tube? Do you want to cancel that?"
"No. First of all, his appointment isn't for two weeks, and he may not
live that long. Second, I don't want to go back to Alan and try to make him
understand that this isn't a good idea. He wouldn't understand the explanation,
he'd only understand that I was trying to prevent him from doing what he wants,
and get frustrated. Third, I don't want to countermand my partner's order
unless it is really necessary. And it's not necessary because Dr. Schultz isn't
going to be willing to put one in.
"It's not a major procedure, but it is surgery, and he'll need an
anesthetic. No one is going to give Alan an anesthetic. He's dying. He has
terrible lungs; he has a big flabby heart; he has renal failure. His lungs are
clear today. There's nothing we can change that will make his lungs or his
heart or his kidneys work any better. We can send him to see Dr. Schultz if he
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wants to go, but putting in a suprapubic tube is only going to make his last few
days more miserable while it heals up.
"If he gets dyspneic, call me for a morphine order."
"Should I talk to Jeannie?" asked Beth.
"I don't know. Use your judgment. We all came out of training full of
technology, eager to use the latest stuff. We were confident that all
interventions and treatments were pretty much benign, and bad outcomes were the
exception. And then we started actually using them, and following patients year
after year, and eventually we figured out that operations and gadgets and pills
are a lot of nuisance for people. Sometimes they're better than the disease,
and sometimes not."
"Yes, I know what you mean."
"Maybe you should just explain why it's not such a good idea for Alan. She
really means well; she just needs more experience. If you can find time to let
her talk out these things, she'll start looking more at the patient and less at
the process."
"I suppose. Should we call Alan's sisters?"
"About how seriously ill he is?"
"Yes."
"Sure, but this isn't an emergency. They'll probably be in this afternoon
or tomorrow, won't they?"
"Yes, I think so. I'll just make a note to myself for tomorrow to call
them then if I haven't see them yet."
"Good idea. Nothing dramatic is happening, and this could take a long
time. He's just sliding across the rocks at the bottom of life's toboggan run.
I'm glad Martha has him today. She'll make sure he's comfortable, and she won't
give him any sales pitch for surgery he doesn't need."
"Who's next?"
They finished rounds, and doctor Pettigrew was gone until next week. That
afternoon the sister did come to visit, and Beth was able to gently confirm for
them that the loss of spunk they'd seen recently was considered by the doctor to
be the harbinger they feared. As always, they had a few basic questions, and
listened calmly to the explanations. After that, they visited every day.
They took Alan around the building in a wheelchair, and told him the family
news. They made small talk with him until they sensed he was tiring, and then
they went home. Toward the end of the week, he told them he was too tired to
sit and talk while they visited, so the chatted in his room.
Alan didn't really change much over the next few days, except to spend more
time in bed. He stopped getting up to walk on Saturday, and early Monday
morning, when the aide went to his room to check on him, he was dead.
When his sisters came to pick up his things, after the staff had helped
them carry his little library and furniture out to the van they'd borrowed, they
stopped by Beth's office.
"We want to thank your staff for the good care Alan got here," the younger
one said, "Everyone always seemed kind to him and patient." The older one
nodded.
"You're welcome," Beth said, "Honestly, most of the time he was a pleasure
to have, and once in awhile he was very interesting." She smiled.
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"He had some pretty rough times in past years," the sister said, "But the
last few years, since doctor Pettigrew took over, have been a lot better for
him. We want you to tell the doctor that we believe Alan lived years longer
than he would have without his care."
"Thank you," said Beth, "He'll appreciate that. Let us know if there's
anything we can do to help you, and let us know when his visitation and the
funeral will be. Some of the staff might want to attend."
"We'll do that," the older sister said. "Any of you would be welcome."
And in truth, the only people at Alan's funeral were a half dozen of the
staff, three fellow patients, the two sisters, a cousin, and the pastor. As
usual, the doctor didn't come, nor was he invited.
5593 Words ·
73
Chapter 7
Obituary
Jim McMurray fell from his kitchen chair last week at the ripe old age of
56. He was old only because he felt old, and he felt old because he had a weak
heart and couldn't do anything. Just to walk to the mailbox made him feel weak
and exhausted. He seemed old to his six year old daughter Jessica, of course,
as all parents do. His wife Karen, was over 40 herself, and she really didn't
care to think of him as old. Seasoned. And ill, for sure.
Jim was a salesman, a manufacturer's rep. His company, Northland Machine
Tools, specializes in custom production. Before he started work for them, he
dropped out of college in mid-stream and wandered around for awhile. He thought
he was going to see the world, or at least his own country. He did see his
country -- from the point of view of a succession of low paying jobs and run-
down apartments with roommates that turned out to be less interesting sober than
they had been when everyone was a little drunk. He came home from a part-time
job for his dad's funeral when he was 23, and met Pat Kuhlman, who turned out to
be not only fun but interesting. So he stayed around, got a regular job in
Northland's stock room, and they got married. Jim caught on with the folks at
Northland, he and Pat bought a little place and had three children, and life
almost got comfortable. Almost. It would be unamerican to be satisfied,
wouldn't it?
He was bright and personable, and interested in things, and after a couple
of years he got promoted to sales. It suited him a little too well. Jim liked
to think of himself as a problem-solver rather than a salesman. A good day for
him was spending hours listening to a customer describe a difficulty,
brainstorming with the machinists or mechanical engineers back at Northland, and
coming up with something his firm could produce that made his customer's work
easier. It's a great way to work if you don't need to be too productive.
Jim was just an ordinary guy, enjoying some parts of his job, but not
necessarily the parts that needed most to be done; and like the rest of us,
enjoyed making a difference once in a while. His company grew, and it got more
difficult to actually walk in and talk to the machinists and engineers. He had
to fill out production requests; these weren't as interesting as a good
conversation over coffee. He didn't express himself well in writing. He needed
the give and take of conversation to refine his thoughts and to get others to
see that his ideas might hold up. There was more pressure to make sales, and
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Obituary
less chance to make a difference. He often began the day feeling tired. Some
times he just wanted to leave; other times he worried that he might be laid off.
He and Pat started to disagree on things. Mostly money at first, then
whether to get a new house, how long the grass should be, what color to paint
the bedroom. All the Major Marital Issues. Eventually he just got tired of
dealing with it. After you've bickered about all the things you've always
disagreed with for a few years, nobody can remember any more just how it got
started, or who first offended whom. The pile of annoyance and frustration and
hurt just sits and moulders, letting off an odor like the garbage that's been
sitting too long in the trash can. After awhile it all just gets too
complicated to unwind and the old hurts rub raw too easily. They raised three
kids, all but the last through high school, and split up.
First they went to counseling. The counselor talked about "better
communication," and "healing relationships." Jim listened to Pat describe all
his faults and all the things she was bitter about, more diplomatically than at
home. He went through the motions, said the things the counselor seemed to
expect, but it was like he was all wrong, and she was right, she was the wounded
one. There didn't seem to be any point in arguing right in front of the
couselor, and he didn't want to hurt Pat by bringing up all her faults.
Instead of debating, he just left, in search of peace. In retrospect, Jim
sometimes says, he wouldn't do it again; everything ended up in a big fight. He
and Pat pretty much agreed just to split up peacefully, but the lawyers seemed
unable to avoid fighting. If there was any hint of unfairness in anything Jim
and Pat had agreed on, one of the lawyers would bring it up as a heinous
violation of justice. The lawyers would debate, and then he and Pat would end
up arguing.
What they had thought should take two months took eighteen, and instead of
splitting things 50-50, they each basically ended up with a quarter of what
they'd had, with the other half going to the lawyers, and with this help they
quit speaking to each other. They ended up selling their house at a bad time of
year and both moved into trailer homes in different parks. His job performance
didn't improve.
But during the divorce he met Karen, a bright light in his life. Karen was
twelve years younger, kind and interested, without kids. Pat was insanely
jealous, he didn't understand exactly why; after all, the marriage was over.
Karen was a comfort and a help. After he was free, she got pregnant, and they
married, and life in the little trailer house was peaceful and sweet. Karen was
delighted to have little Jessica, a sweet, quiet child, and Jim felt young again
with a baby around. His kids seemed to understand after awhile, and made
friends with Jessica and then Karen. His memories of being with Pat faded
comfortably. Working at Northland seemed tolerable again. He had a couple of
years of peace.
After two winters, he got a bad cold, and then a nagging nighttime cough
that wouldn't go away. He saw the doctor several times, took four or five
different antibiotics, and even tried asthma medication, but simply didn't get
better. After a few weeks he was surprised that he would run out of gas just
walking around factory floors with his customers, and sometimes he had to stop
to rest halfway up a flight of stairs.
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He was hardly 50; but maybe his smoking had gotten to him. He quit for
awhile, and his wind got a little better, but his nerves were shot and he gained
ten pounds. Rather than buy all new clothes, he started smoking again to kill
his appetite. Sometimes his ankles would be puffed up in the evening, and then
he'd have to get up to pee a couple of times in the night, as if he'd had too
many beers.
After a couple of months, he started waking up at night. He wasn't sure
why; sometimes he had nightmares about being locked in an airless closet or
being choked in a fight with his boss. Then one night he woke up from one and
was still smothering. It got a lot better after he sat up, but his coughing and
movement woke up Karen, who switched on the light, saw him pale and sweaty and
panting and dialed 9-1-1 without asking.
It was embarrassing to be hauled off in the ambulance, but the oxygen they
gave him really eased his breathing and relaxed him. An internist named Quimby
took care of him, took twenty pounds of fluid off with a diuretic and got an
echocardiogram.
The echocardiograph machine interested him. It turned out to be
essentially an $80,000 fish finder, only it used ultrasonic waves to paint an
image of his beating heart rather than a reef. It was a huge machine on wheels,
with a cold hard probe at the end of an articulated arm, and as the technician
worked, she talked constantly to it, giving it a play by play in medical jargon.
This showed a big, weak heart. Quimby sent him off to Mayo to see a
cardiologist. There were a couple of days in the large hospital and a heart
catheterization and lots of blood tests and then the news that his heart was big
and flabby but his coronary arteries were pretty clean. It wasn't his smoking
or cholesterol, probably a virus, and his heart would most likely get gradually
weaker until only a heart transplant would help.
. . .
When he fell off the kitchen chair last week, Jim hadn't worked for 5
years. His job wasn't that demanding physically, but as his heart continued to
fail, eventually just walking a hundred feet made him pant. He tried to
compensate, but he simply ran out of energy in general. Merely to think about
what to do next was too much effort. He lost his job; they said it was his
performance, not his health. He couldn't afford to keep his health insurance
under COBRA, so he lost its coverage. He couldn't afford all the expensive
medications Quimby wanted to prescribe--$300 a month! And Quimby's office visit
charges went up 10% or more every year. Quimby seemed apologetic, blamed it on
the Medicare fee freeze. He was abashed but not generous. Jim couldn't afford
to see him just out of loyalty, so he only went back when he couldn't stand how
he felt.
Karen worked jobs as a cashier and as a waitress, but these jobs didn't
give her health insurance. Jim took care of Jessica. He raised her from 3 to
8. His grown kids, from his first marriage, came to visit, but didn't have
extra money to help. Jim wouldn't have asked them for money, anyway.
He applied twice for disability status from social security, and was denied
both times on technicalities. Doc Quimby couldn't understand, he said, how they
could deny him. The third time he applied, he got it, and the first check had
come last month. Now he had only five months to wait before he'd be eligible
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for Medicare. Then he could go back to Mayo, to arrange for the heart
transplant his cardiologist had been talking about for five years.
Jim still smoked. He felt bad about it, he knew he shouldn't do it, but it
was only a half pack a day, not much; a man has to have something for the stress
and the boredom, and he didn't drink. Whenever he tried to quit, his appetite
was ravenous and he gained weight like crazy.
His original heart cath had shown that his heart's "ejection fraction" (the
proportion of blood ejected with each stroke) was about 20% -- 55% or more is
normal -- and over the five years since then the echocardiograms done with his
disability evaluations showed the ejection fraction had slipped further, hardly
compatible with life. Dr. Quimby was carefully frank. This was an "idiopathic"
condition, likely due to a viral infection, not to smoking or high cholesterol.
There was no treatment except transplant. Without transplant, there would be a
risk of sudden death of about 20% per year. The medications he should take
would reduce this risk, Quimby said. But most of them were simply too
expensive. "What good will it do," he told Karen once, "if I live, and you and
Jessica starve?" He didn't mention it again.
Generally Jim didn't talk about his sickness or about dying. He acted
optimistic about life in general, and matter-of-fact, sometimes maddeningly so,
about the delays and frustration with the government. When Karen complained, he
sometimes would say, "Forty years from now no one will know the difference. I
feel OK as long as I don't do anything."
. . .
Jim went into the kitchen for the last time at suppertime, and sat down,
waiting for Karen and Jessica. While they were coming, they heard and felt a
tremendous crash. They ran to the kitchen to see what he'd dropped. It was
him, crumpled on the floor, arms at illogical angles, his face darkening.
When she saw him on the floor Karen screamed, "Jim!" and ran and knelt by
him. She pulled his arms and legs into comfortable positions, and she talked,
and called, and shook him to wake him up. He didn't move. She remembered what
she'd seen of CPR, and put her mouth to his, and tried to breathe into him, but
it wouldn't go. She jumped up and went to the phone to call 9-1-1. Jessica
fluttered around, calling, "Daddy! Daddy!" and she knelt down and shook his
shoulder to wake him up and pried an eyelid open while Karen told the dispatcher
that Jim was down.
During the brief eternity that they waited for the EMT's, Karen tried again
to breathe into him, but she couldn't get any air in. His neck turned dark and
his lips were pale.
It was a great relief to hear the ambulance in the drive, to jump up and
open the door for the EMT's and to be able to stand by and watch them get busy
with him. They put paddles on his chest. A mechanical voice said, "Analyzing
rhythm... Charging... Stand clear... Shocking... Analyzing rhythm...
Charging... Stand clear... Shocking." When it said "shocking" his body jerked.
A tube went into his mouth, and someone bent over his chest, rhythmically
compressing it. "We've got a rhythm, but no pulse," one EMT said. Another,
listening with a stethoscope, said, "We've got good breath sounds bilaterally."
An IV was started. They worked on the floor for about 15 minutes, then loaded
him on a stretcher and into the ambulance.
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. . .
In the ER, the doctor on duty, George Pettigrew, looked at the strips from
this resuscitation. The 9-1-1 call had come at 6:37 pm, and the first shock was
given at 6:44. He had a pulseless rhythm at 6:46, so he had been down and
without pulse or ventilation for a minimum of 7 minutes, plus whatever time it
had taken Karen to run to the kitchen, figure out that this was something
horribly beyond her, remember 9-1-1, and complete the call. This seemed like
primary ventricular fibrillation with nearly 10 minutes without cerebral blood
flow. Just about a zero chance of having an intact brain, but a good chance of
resuscitating his body.
Jim had a normal heart rhythm, a low but acceptable blood pressure, and no
evidence whatever of neurologic function: His pupils were partially dilated,
and didn't react to light. There was not a twitch of muscles anywhere, not with
any kind of stimulus. There was no gag when the tubes went in, and no effort to
breathe. They hooked up the ventilator, started intravenous dopamine at a low
dose to support his blood pressure, and went off to the intensive care unit.
In the intensive care unit, doctor Pettigrew and the nurses let Karen stay
with them, and asked her questions about Jim and his condition as they worked.
It was an extremely disjointed conversation. A couple of sentences between the
respiratory therapist managing the ventilator and the doctor, then one on a
different concern between a nurse and anesthetist, then nurse to nurse, then a
question from the doctor to Karen, then a question from a nurse to the doctor.
No one seemed very excited, just calm, busy, focused and attentive, each
carrying on several terse, businesslike conversations at once.
After awhile, Jim's neck and shoulders began jerking, movements that made
the ventilator click and buzz, agitated and loud, over and over again. The
respiratory therapist adjusted the ventilator settings, which reduced but didn't
eliminate this. It was hard to watch. The nurse and doctor talked. Karen
said, "Can you make him more comfortable?"
To do this, doctor Pettigrew decided, it would be best to paralyze Jim with
the drug, Pavulon, so the jerking wouldn't interfere with the ventilator's
operation, and to give him an intravenous infusion of a short-acting sedative,
to be sure he slept undisturbed while paralyzed.
As the nurses and the doctor became satisfied with Jim's status, their
conversations lulled, and doctor Pettigrew finished questioning Karen about
Jim's past and recent health. Jim's charts arrived from the file room and he
studied these for several minutes. Then he came to Karen and said, "OK, I think
I've got things sorted out. Would you rather talk here or in the lounge?"
"Here, please."
Doctor Pettigrew said, "Our main concerns are how strong the heart might be
after this has happened, and whether the brain can recover. The fact that you
couldn't get any air into him is a pessimistic sign. Also, CPR isn't very
effective in moving blood through a large, sick heart."
"So you're saying that the CPR didn't really work."
"What I'm saying is that it couldn't have worked well enough to let his
brain recover to something like normal."
"What should we do?"
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He said, "Sometimes the brain is more stunned than injured. Studies have
shown that by 24 hours after the arrest, we can get a good idea of how much
damage has been done. So our plan, unless you feel differently, should be to
keep Jim on the ventilator for 24 hours to be sure of the extent of damage, then
do a thorough neurologic exam again, and then talk more about what to expect."
"OK, I'll talk to the others."
She stayed by Jim's bed all night and all the next day. Jessica went home
with Karen's sister; nurses came and went, one shift at a time; doctor Pettigrew
stopped in every few hours; Jim's grown kids and their wives took long turns
staying with them. She called his brother in Des Moines, 8 hours away by car,
who was having trouble getting his boss, even on a weekend, to let him take a
couple of days to visit. The trouble was finding a replacement on short notice
in a factory that ran 24 hours a day..
In the morning, everything was the same. There was a scant half-cup of
urine in the collection bag, the ventilator hissed and sighed. The nurses were
busy and kind. His kidneys weren't working; his heart had strengthened; the
unknown was his brain. Jim didn't move. There was a throng of family to visit
him, grown sons and daughter, brother, sister, spouses; nearly twenty people in
all.
Doctor Pettigrew stopped the medication that paralyzed Jim and then the
sedative. "We'll let his body get rid of these medications, and then I'll do an
exam to see what's happening. A standard is to do a complete evaluation after
24 hours, to assess the condition of the brain. Has he ever talked to you about
what he'd want done if he were incapacitated?"
"No, he never did."
"Well, we'll simply have to be kind and realistic. One risk is that the
brain might be damaged severely and the heart not damaged much. There's no
evidence yet of significant heart damage. It would be sad if his heart were OK
and his brain didn't work."
"No, he wouldn't want to live if he couldn't talk to his family. He
wouldn't want just to be kept alive." The throng surrounding them nodded. "His
brother is coming from Des Moines. But he's having trouble getting off work, so
we're not sure when he'll be here. He should be here when we decide to do
anything."
Jim rested all day, motionless and peaceful, even without medications. The
respirator quietly, monotonously, pumped and hissed.
. . .
George Pettigrew did not rest. Besides being on call and having many other
things to do, he worried about this family, and what this meant for them. He
unburdened himself to his wife at supper.
"There's this hard situation in the CCU today. I've got this guy in his
late fifties who had a cardiac arrest yesterday and didn't get competent
resuscitation promptly, so he's just about brain dead.
"He's got a devoted young wife and a cute little daughter. Besides that,
he has grown children from his previous marriage that are arriving. Nice
people. They're not well educated, so it's hard for them to understand the fine
points. I think his wife understands that he's probably not going to make it,
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and now we're just waiting to do the 24-hour neuro exam to make sure he's really
not going to have a brain."
"That's hard for the little girl. Does she understand?"
"I can't tell. Her mom brought her in to see him when we brought him into
the CCU, and then whisked her away and hasn't let her come back. She thinks
she'll freak out with the machines and tubes if she keeps coming back, so she's
staying with friends. Mom's probably right."
"How's mom doing?"
"Oh, she's a trooper. She really wants him to recover, but he's had a
terrible heart -- an idiopathic cardiomyopathy -- for years, so he hasn't been
able to work for a long time, and she's had the threat of his death hanging over
her besides. She didn't know CPR, and so when he went down she didn't do the
right things. She was so panicky she might not have been able to remember
anyway. I explained to her that CPR is pretty ineffective in people with big,
baggy hearts like her husband's, so that she probably wouldn't have been able to
help him much anyway. I hope that helps her get over it."
"How's her husband doing?"
"His heart's doing OK. Normal rhythm, blood pressure needs only a litle
support with pressors; his kidneys are working pretty well. But his brain
isn't. There's no chance that he'll ever be able to function outside a nursing
home even if we can keep him going."
"So what's the plan?"
"After we're done with supper, it'll be almost 24 hours. He will have been
off all medications likely to affect his brain for 10 or 12 hours at that point,
so we should be able to get a valid neurologic exam."
"Then will you turn off the respirator?"
"I don't know. The problem is that his brother in Iowa hasn't been able to
get off work, and I'm sure she'll want to keep him on the vent long enough for
his brother to come and say goodbye."
"Why is that a problem?"
"Well, the longer we support him on the vent, the greater is the likelihood
that he'll regain just enough brainstem function to support spontaneous
respirations. Worst case scenario is that when we turn off the vent, the family
gathers around to say 'goodby,' and after a minute or two he starts breathing on
his own.
"Then suddenly it looks like I don't know what I'm talking about, and the
family will think there's hope of full recovery, and either make us rush him off
to a tertiary center for a full-court press, or make us do 'everything' to keep
him alive until they are convinced, independent of my no-longer-reliable
professional opinion, that he won't make it."
"They have that right."
"I know. I don't mind the work, and the hospital would welcome the
revenue. But there's no hope whatever that he'll ever be able to function
socially again, and he still has this end-stage heart that should have been
transplanted five or six years ago.
"Besides that, they have no money, and the bills will bankrupt her. She'll
lose their little home and struggle along in the no-man's land between her eight
dollar an hour job and welfare. It'll be hell. She has no idea how bad
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'maximum possible recovery' could be for him, and I don't have the courage to
dump it on her unless I have to."
"So what are you going to do?"
"I don't know. Just hope he has no brainstem function when I go in to
examine him, I guess."
. . .
Later that evening the family and doctor Pettigrew regrouped to do the
neurologic exam. He prodded and tapped, he shone a light in Jim's eyes. He ran
hot water into one ear and cold into the other. During all of this he might as
well have been touching a corpse: there was no response. The only movement was
the rise and fall of his chest as the ventilator pumped and hissed.
He and Karen and the family throng talked about the results. There was no
evidence of any brain activity, scant evidence of brainstem activity. There was
a chance of Jim recovering to a nursing-home life, but no chance of him
recovering to his old humorous, intelligent, sociable self. Karen said, "I'm
just not ready to turn off the ventilator. His brother will be here tomorrow,
and Pastor is coming over after church to meet with us."
Doctor Pettigrew said, "Surely. We'd be glad to do this. I can't promise
that his heart won't stop before then, and I don't think we should try to re-
start it if that happens."
Karen said, "Yes, I agree."
Doctor Pettigrew did not say that the longer Jim was kept on the
ventilator, the greater the chance that the brainstem would recover enough to
maintain respiration after the ventilator was stopped, delaying death by days,
weeks, or perhaps months. He did not say how much harder it would be for Karen
and Jessica and the throng if they gathered the courage to pull the plug and
then Jim started breathing, and lingered -- sweating, working hard to breathe,
spasmodically twitching or even seizuring.
When they finished talking, Karen went to talk to her family in the lounge;
Jim's daughter stayed. The rhythm of the ventilator speeded. Jim had begun
triggering the ventilator. Was he breathing on his own? The muscles of his
neck and shoulders began jerking almost rhythmically. The ventilator was
sensing some of these jerks as attempts at respiration, and was trying dumbly to
follow his lead, going much too fast. Doctor Pettigrew adjusted some of the
settings, but the buzzers began to alarm, and Jim's oxygen saturation dropped.
Doctor Pettigrew said to the daughter that had remained with Jim, "He's not
really trying to breathe. These jerks are called 'myoclonus,' and are a sign of
injury, not of recovery." The daughter left to talk to the others.
Karen returned, agitated. "Why are you changing it? You're making him
suffer!"
"No, actually I'm trying to follow his pattern, so he'll be more
comfortable." The doctor made more changes, after which the alarms stopped.
The respiratory therapist returned and made more adjustments, but the jerking
continued and the ventilator followed along, ever faster. The whole family was
gathered around now, interested and agitated. The sixteen hours until the
meeting with Pastor were looking to be long ones.
Doctor Pettigrew said to the nurse, "We need to paralyze him again. They
can't stand watching this all night. Let's start Pavulon again."
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She injected the Pavulon. Paralyzed again, Jim's jerking stopped, the
ventilator slowed, Karen and the family calmed. Jim lay peacefully again.
Jim's brother finally arrived after midnight, driving all evening straight
from work, and the family, complete now, met in the lounge for a long time.
. . .
When doctor Pettigrew made rounds in the morning, Karen took him aside and
said, "We've talked over this all together, and we want the ventilator turned
off after the pastor visits this noon."
"OK," the doctor said, "Why don't you have the nurse call me when the
pastor comes?"
Shortly after noon, the pastor came. The entire family gathered around
their peaceful man's bed and the sighing ventilator, and the pastor helped them
pray together, thanking the Lord for Jim and their life together, for all the
good he'd done, for the companionship they'd had, and committing Jim's soul into
the grace and mercy of God's love. Then they called the doctor.
"We want to go in and say goodby to Jim one or two at a time, and Karen
last. Then you will turn off the ventilator and some of us want to be with him
while he goes. Karen doesn't want to be there then, but she'll come in after
he's gone, to see him."
"OK," doctor Pettigrew said. "I'll stay right here." It would not help
them at all to mention that sometimes these patients start breathing after the
ventilator is turned off. If this were to happen, they would be more upset than
last night when the alarms went off after he started jerking. Nor would it help
them to warn that he might start breathing and lie in bed for days, everyone
wondering when the end would actually come, asking themselves over and over if
they'd done the right thing, wondering if the doctor might have been mistaken
about the prognosis, wondering if his brain might have recovered if they hadn't
stopped it.
The sons and daughter and brother and sister took turns coming by ones and
twos, and quietly weeping goodby at the bedside. Doctor Pettigrew and the nurse
talked quietly at the desk. He said, "I think that we'd better give a dose of
Pavulon just before we turn off the vent. This family just won't be able to
handle it if he starts breathing again after all this."
"I think you're right," she said.
After about half an hour, everyone had said goodby, and was standing in the
hallway outside the intensive care unit. Doctor Pettigrew went to the door, and
asked, "Who would like to come in?" The nurse injected the Pavulon into Jim's
IV.
First a daughter, then his son, then four more came forward out of the
teary crowd at the door and came to Jim's bedside.
The doctor reached over and turned off the ventilator. The alarm buzzed
one last time; there was a little gasp from Jim's grown daughter, and then there
was silence.
Over the next several minutes, Jim's heart rate slowed gradually, and when
it got below 20 and the electrical complexes widened, the nurse reached up and
turned off the monitor.
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The nurse and doctor removed all the tubes and IV lines, rolled the
ventilator away, neatened the covers, wiped his face. Karen came in, embraced
him, and wept farewell.
In a few minutes, she stood up, walked around the curtain to the nursing
station, and said, "Thank you for your kindness." The relatives with her
nodded, and they all left.
5106 Words ·
83
Chapter 8
The Fisherman
The Powell family, for years whittled down to just Donna and Irv, had been
making a fortnightly pilgrimage to see Dr. Steve Williams, his oncologist,
forever. Actually, it had been just three years, but it had become a lifetime.
Normal life--dinners out, trips, fixing up the house, dropping in on friends--
was a memory. Irv's disease had dominated their lives as if a blimp had been
parked in their yard, overshadowing everything, enormous, distracting,
inconvenient. The Medicare co-pays had long ago swallowed up their small
savings and medications took nearly half their social security check, and they
owed three or four thousand to the clinic. Donna had never thought door to door
sales was much of a career, but lately Irv's customers were their lifeline; even
after he couldn't get out, some people called and made orders, or came by. It
wasn't much, and it was a little less every month that he couldn't get out, but
it helped. Donna wrote out the orders and kept track of the bills. Irv
enthroned himself in his chair by the TV and enjoyed the company when folks came
by.
Donna felt neutral about the clinic. Dr. Williams did him some good, and
the staff was almost always cheerful and pleasant. But on the other hand, there
was the billing. The clinic submitted the physician fees to Medicare, but not
for the labs or procedures. They still asked for payment right away, and she
couldn't send in the claim herself until she had a bill in her hand. So her
payments were late. At first, she had paid right away, and waited for
reimbursement. But money ran short, and now the clinic just had to wait, and
they weren't very patient about it. She especially disliked the ritualistic,
diplomatic calls from the billing department. They were always polite, but
always quite firm, and Donna was just tired of it. The money to pay wasn't
there, and twenty or forty dollars a month was all she could manage, and no, she
wouldn't forget, so why can't we just quit talking about it?
At the beginning of this week she and Irv had gone in. She had had to
kindle a spark in Irv just to get him out of his chair, and he was damp wood,
let me tell you. Get him up; talk him into shaving; supervise dressing; walk to
the garage in three stages with rests in between; work him into the car. It
took nearly an hour. And she had to get to the clinic well ahead of his
appointment. Pull up to the entrance; find a wheelchair; bring it out to the
car; load up Irv ("Put on the brakes, Dear!" "They are on. Turn and sit.");
bring him in to the lobby and park him at the registration desk; go back to the
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The Fisherman
car, drive around and find a parking spot; walk back to the registration desk.
Sometimes he was still there, waiting; sometimes he'd been taken off to lab or
xray or up to Dr. Williams' office and she had to track him down. It should
have been frustrating, but the hunt gave her a moment of freedom and a whiff of
excitement, she knew where he usually went, and she was pretty sure they
wouldn't hide him.
Then there was the suspense of not knowing how far behind the doctor would
be. Once Irv had argued about the appointment time until he convinced her she
was wrong, and they'd come at 10:30 instead of 2:30. But somehow they were
slipped into the schedule with hardly any wait that time, even though usually
Dr. Williams was about forty minutes behind.
Today she hoped he wouldn't have to wait so long, as lately Irv had been
awfully short of breath and completely without spunk. Donna had treasured a
slight hope that this could be eased somehow.
. . .
After he came into the exam room, Dr. Williams flipped through the pages of
Irv's chart, reviewing the labs and today's nurses notes. "Tired/weak/SOB," she
had written. His blood pressure was low, his weight was up.
"Hi, Irv. How are you today?" He smiled at Irv's wife, Donna, sitting
with him, as always.
"Hi, Doc. I'm pretty bushed."
"I'm sorry. It's gotten pretty tough, hasn't it? Are you sleeping OK?"
"Yeh, pretty good. I have to go to the bathroom four or five times a
night, and if I lay flat I get short of breath."
"He's sleeping in the recliner," said Donna. "Is that good for him?"
"My stomach feels bloated," said Irv. "I'm full all the time. I try to
eat a lot, but Donna says I don't eat much at all."
"He just picks at his food," she said.
He helped Irv onto his exam table and dented Irv's ankles lightly with his
thumb, then listened to his chest. He had Irv lie almost flat while he kneaded
his belly and then looked at his neck. He brought in Irv's xrays and showed
them Irv's large heart and the fluid around his lungs. This xray was looking a
little worse than last month's. He showed them the results of the blood tests
The counts were down; Irv's kidneys weren't working well.
"How long do I got, doc?"
"Well, I can't say exactly. I think you can keep going awhile if we're
careful. Your lymphoma has progressed despite your chemotherapy. But it's been
slow. Your low blood counts make your heart failure worse, and your kidneys
have trouble getting rid of water. Why don't you come into the hospital for a
bit? I think we can help you feel better."
"No, I want to wait if I can."
"OK. Just call me if you change your mind or if this gets worse for you."
"Doc, he ought to go in," Donna said.
"No, I'm not going to," said Irv.
Doctor Williams looked at Donna, then Irv. "We can probably take some more
of that fluid off you and give you a transfusion if you come in. I think you'd
be more comfortable."
"I want to go home."
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The Fisherman
"OK. If it's too much, we'll be glad to have you come back. You can
always dial 9-1-1 and call for the big truck with the little bed to come and
bring you to visit us. We'll leave a light on for you. Why don't you take your
water pill after lunch as well as in the morning, and let's see you in a week or
two."
. . .
The next morning, Irv parked himself in front of the TV for a couple of
hours after having a half of a piece of toast with jam and some orange juice.
He got up to go to the bathroom, and when he came back he slowly made his way
into the kitchen and said to Donna, "I'm going fishing."
"Oh, Irv. You don't need to do that."
"I haven't been fishing for months."
"You don't have the strength to get the boat in the water."
"I'm just going to that trout stream back of Nelson's. There's a spot
close to the road. I can drive in. It's flat ground, and I can sit on the bank
and fish for awhile."
"Don't do it, Irv. What if something happens?"
"Well something is going to happen. But I feel good enough to go. All I
do is sit. I can sit as well by the creek as in this damned chair. This cancer
is gonna get worse, and I want to go fishing. There's nothing doc Williams can
really do for me. Taking fluid off might help my breathing for a few days, but
it makes me weak, and them diuretics they use in the hospital give me terrible
leg cramps. I'm going fishing."
"Why don't you wait 'til we've had some lunch?"
He negotiated for an early lunch, ate a quarter of a sandwich, drank half
his glass of milk, and went to the closet. He slowly put on his favorite
fishing clothes, a khaki jacket with six pockets and his red and black checked
wool baseball cap. This made him pant, so he sat in his chair for a minute
before he put on his boots. He found the keys to his old pickup, and walked
slowly, stopping twice to blow a little, to the garage. He picked up an old oil
rag and wiped some of the dust off his tackle box, and took a fly rod off its
hooks.
He laid these in the bed of the pickup, and after another little rest,
leaning on the side of the box, he got in and drove away.
It was just a mile and a half to Nelson's place. There was a little turn-
off, grassy and hardly used, from the town road onto Nelson's back 40, a marshy
place through which one of his favorite trout streams ran. It was just a
hundred yards' drive into the brush, and he and Nelson and their friends had
used it often enough that the path was clear of brush, although overgrown with
grass. It was a cloudy mid-September day. The aspens and willows were turning
yellow, some of the maples had already dropped most of their leaves and the rest
were variegated brilliant shades of orange. The oaks were starting to turn
purple and brown, and up close the green leaves of the red oaks were spotted
with red.
He got out of the pickup, picked up his rod and tackle box, and walked
forty feet to the low bank of the small creek. It was about 15 feet wide, clear
and brown, flowing silently. He tied a lure onto his line, cast it into the
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water, and sat down on the bank, his boots just in the water, resting on the
sandy bottom. His blowing and panting quieted down, and he was happy.
. . .
At four o'clock Donna decided to call the sheriff. Irv had been away much
longer than he should have, given his state. She was sure he had gone to
Tamarack Creek back of the Nelson's, but she didn't want to go and look for him,
fearing what she might find. She had the sheriff's department number beside the
phone. She didn't trust this new 9-1-1 system; who knows whether they'll give
you the sheriff's office, and that's who she needed. The dispatcher answered,
"Sheriff's department."
"Hello, this is Donna Powell. My husband hasn't come home."
"OK, what's the situation?"
"Well, he's sick. He insisted on going fishing after lunch, and he ought
to be back by now. He can't stand up ten minutes in the house without sitting
to get his strength back. He has cancer, and I'm afraid something has happened
to him."
"Do you know where he went?"
"Yes. Can you send a deputy out here, and I can give him directions where
to go."
"Surely. Just give me your fire number."
. . .
Deputy Olsen had no trouble finding the spot. It was close to Irv's home,
and he knew the area pretty well. Irv's pickup was hidden by brush, but Donna's
idea of where Irv might be was exactly correct. She knew her husband. He
pulled his squad up behind Irv's pickup and got out.
He walked through the brush up the path, and saw the creek across a little
grassy glade. No one was there. He wondered how far up the creek Irv had been
able to walk. Donna had made it sound as though Irv could hardly walk twenty
feet, and it was at least three times that far to the bank.
The pickup was cold. The keys were in the ignition, and on the seat was a
paper lunch sack. He looked into it: there was a half sandwich and an orange,
both undisturbed.
He walked slowly to the edge of the creek, and looked up and down the bank.
Just to his right was Irv's body, tucked into the edge of the bank, his legs and
torso in the water up past his shoulders, his head tipped to the side, his right
ear just in the water.
He went back to the squad and radioed for backup, and then the rescue squad
and the medical examiner.
. . .
It was near the end of the afternoon. Dr. George Pettigrew put another
chart on his desk, on top of the stack of dictation to be done, and walked back
toward the next exam room. The day had not gone badly; a steady stream of
patients, but no really time-consuming problems to get him way behind. He felt
a faint mist of fatigue settling over him; meanwhile, a little buzz lingered
from his last cup of coffee. He'd spent an hour and a half in the heart of the
night getting old Mrs. Gentian out of pulmonary edema, and now his reserves were
shot. He let himself think of going home for supper.
He passed his assistant in the hall. "How many more, Diane?"
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"You're doing OK. Two in rooms and just one waiting."
He picked up the next chart, a slim one. Frank Ellison, nobody he'd seen
before. He looked inside. Just a few papers, rare visits through the years; a
healthy guy. Diane's note read, "L ankle sprain x 2 d."
He went in, introduced himself, and said, "Let me take a look at that
ankle," reaching toward Frank's foot.
Frank drew it back and said nervously, "It's not my foot. I didn't want to
talk to your nurse about my problem. Don't make any notes in your chart about
this, OK? I think I got a dose of something."
"What happened?"
"Well, weekend before last my buddies and I went fishing. We went up to my
friend's cabin, and Saturday night they brought in a bunch of girls. I don't go
in for that sort of thing, doc, but we'd had a few beers."
"OK, so you had one of the girls."
"Well, I wasn't going to, but it was like 'Don't be such a wuss,' and I was
last, so I ended up with the ugliest, scuzziest one of the bunch. God, it was
stupid. But we were all drunk, and it seemed logical at the moment. And now
I've got this burning when I pee, and a new little growth on dick, and my wife
is beginning to get impatient. I'm running out of excuses."
"Let's take a look."
The phone rang.
"Excuse me." He picked it up. "Pettigrew."
Frank had begun to stand, to undo his jeans. Now he sat, upright, alert,
his belt dangling in his lap and his pants unzipped while George talked on the
phone.
The voice in the phone said, "Dr. Pettigrew, this is the sheriff's. We
need you right away out at a scene. There's a man in a creek in the southwest
part of the county."
"Is he dead?"
"Yes."
"Then it's not an emergency."
"We've got two squads and an ambulance there waiting for you to clear the
scene."
"I've got three living patients in my office to see yet, and four in the
hospital that might need me any time. It'll be an hour."
"Well, they need you as soon as possible."
"They'll just have to do what they need to do. Tell them it'll be about an
hour."
"They don't have a phone."
"Try the radio."
"Reception isn't all that good out there."
"I can't fix that. I'm sure there's a neighbor with a phone. Give me
directions."
The directions were complicated but clear. There was a dead man in
Tamarack Creek, about twenty miles into the southwest corner of the county, and
George's afternoon had just been extended indefinitely.
The county had had a coroner system for many years, but the last coroner
had been Phil Seivert, an insurance salesman with no medical training. It
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couldn't have been the hundred dollar a month salary he was after when he ran
for election. The district attorney got the county to change the position to
medical examiner, which by law required a physician and was appointed rather
than elective, after it began to seem as though Phil was extremely interested in
photographing the unclothed bodies of the dead. About the time he would have
run for re-election, his position was abolished. No fuss, no muss, no lawsuits.
The county fathers had assumed that one of the local physicians would be
happy to pick up this responsibility, without having asked any of them. And it
happened that George had just given up doing obstetrics, which had left him
feeling just sufficiently unburdened that he had let himself get roped into the
job. It actually wasn't a hard job; deaths needing investigation weren't
frequent. But they were all, like this one, at inconvenient times. It's not
that there could be a good time to die, but George was always doing something
else. An auto accident with a fatality might happen right in the middle of a
busy clinic afternoon, and the law enforcement officers seemed to expect that he
should leave clinic, drive to the scene, agree that the dead person was dead,
take photos, and give his blessing to remove the body; and that the sick
patients in clinic should contentedly wait for this ritual to be completed. Or
the calls came in the evening while he was playing with his children. Or on the
throne. Or in his wife's embrace. Or, as now, right in the middle of a
delicate conversation with a distraught patient.
He turned back to Frank. "I'm sorry about that. Let's take care of you."
Frank had a fresh little venereal wart on the tip of his penis. George
could almost hear the marriage crumbling in the distance. He told Frank how to
treat this, and took a culture, and sent him to the lab for the rest of the VD
testing; he warned Frank that he should use condoms to protect his wife, but
George didn't have a clue for Frank about what to tell his wife or how to tell
her. As little of the truth as possible and profuse abject apology and an open
checkbook seemed like a reasonable start. Frank crept away and George went on
to his next patients.
Fortunately, they had minor issues, and it took George only about 40
minutes to finish up and drive to Tamarack Creek. The dispatcher's directions
had seemed a little confusing, but were exactly accurate. He pulled off the
town road, parked behind the ambulance and two squad cars, and walked a hundred
yards along a path. When he got past an old faded red pickup, he could see a
little gathering of people in a clearing by the bank of a creek.
It was a lovely spot; a smooth green sward alongside a gently sinuous
creek; the glen, an autumnal room walled with orange maples and purple oaks,
fringed in red and orange sumac; along the banks were yellow willows and golden
alders. The sun was just setting. The men in their uniforms and gear were
incongruous aliens in this peaceful glade.
Deputy Bill Olsen saw him coming, and walked to meet him. "Doc, thanks for
coming out. We've got this guy in the creek, and we left the scene intact in
case that would help you decide the cause of death. His wife says he has some
kind of cancer. He hasn't been fishing for months, but he got the idea in his
head to go fishing this afternoon. She got worried when he didn't come home and
called us. We've had a little discussion here. I think he probably killed
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himself. Maybe he took a bottle of pain medication and came out here so nobody
could interfere."
"OK," said doctor Pettigrew, "Let's take a look." They walked up the path
under a splendid bower. The tops of the trees glowed in the low sun.
As they drew close to the others, one of the EMT's stepped out to meet him.
"Hi, doc," he said, "Glad you're here. We got a guy drowned in the creek here,
and we got to clear the scene and get back on duty."
"Well, let's take a look, Jim," said doctor Pettigrew. "Where is he
hiding?"
"Here he is," said Jim, pointing down at below the low bank of the small
creek.
George walked to the bank and looked. First he saw the top of a red and
black checked baseball cap. When he was close, and could see down past the
edge, there was an old man in drab work pants and and a khaki jacket submerged
at the edge of the creek, his feet in the stream, his shoulders at the shore.
To the right of the body there was a fishing rod lying in the grass, its handle
on the bank and tip in the water. The line, he could see faintly, trailed off
down stream. The water was dark brown but clear. To the left was an open
tackle box. There was no stringer and no fish.
"What's his name?"
"Irv Powell. He lives just up the road a little ways."
"How old is he?"
"Seventy two."
"Do you know anything about him?"
"His wife said he's been sick. That's why she was worried when he was gone
more than a couple of hours."
The bank was only about two feet above the water level, with a slight notch
or vee where the man's body was. It would have made a comfortable backrest if
someone were to sit in the water at the creek's edge. Under the edges if his
cap, the dead man's hair was grey and somewhat disheveled. He had dark plastic-
rimmed bifocals that were just slightly askew. The skin of his face was very
pale, and his neck was mottled purple.
There was no blood anywhere; no weapon, no pill bottle. He wore a khaki
jacket, neatly buttoned, and a brown shirt beneath. The water came up onto his
shoulders. His body was tipped to the right, so that the right shoulder was
submerged and the left was just out of the water. The man's chin was just at
the surface of the still water, his cheek and right ear touched the water. His
black and red checked woolen baseball cap was dry, in place on his head.
Through the clear brown water, George could see the man's olive khaki
trousers and lace-up leather hiking boots. The creek was shallow under him, so
that the man's body, except for his feet, was resting on the sandy bottom. On
the bank above the man's head the grass was compressed, and the blades at the
edge of the bank were bent down over the bank and under his head.
"We didn't disturb anything, doc," said Bill. The other men edged closer.
"Do you think it was suicide? Or do you think he drowned?"
"Was there a note?"
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"No. And his wife said he hadn't said anything that made her think he
might do it. He only took his water pill and heart pill this morning. He has
guns, but hasn't touched any of them for months."
George looked again, carefully, at the body while they talked. The man's
face was restful, as if he slept. He said, "Thanks, Bill, for leaving this
alone. This man didn't commit suicide, and he didn't drown. I think he died a
natural death."
"How do you figure, doc?"
"Well, first of all, he probably didn't commit suicide. There are no
wounds, and it sounds as though he didn't take any extra pills at home. His
wife probably managed all his medications for him, and he wouldn't know what to
take anyway. There are no wounds and no blood.
"Second, he didn't drown. Since you didn't move him, we can see that his
nose and mouth are out of the water. If he had drowned, at least his mouth
should be under water, and there's no force in the water that would push him out
afterward. And there aren't any waves in this creek to smother him.
"Third, he didn't put himself in the water and he didn't fall into it. If
you look at the grass, you can see where he sat on the bank, and by the way it's
bent you can see that he slid down into this position.
"It looks like a sick old man came here to fish, and he just happened to
die soon after he sat down and put his line in the water. He died a natural
death, and after he was dead his body slowly slid down this vee in the bank into
the water where you found it. I think he died pretty soon after he got here,
because there's livedo around the neck and he's pretty cold."
"Are you going to order an autopsy?"
"I don't think we need one. I'll call his doctor tomorrow. You guys pack
him up and take his body to the funeral home. Let's go talk to his wife."
. . .
Bill and George walked slowly across the gravel drive to the front door.
The man's name was Irv Powell, and his wife was Donna. They lived only about a
mile and a half from Tamarack Creek. George's beeper went off. He looked at
the number it displayed. His own. He had forgotten to call his wife. He said,
"Bill, I wonder if you could radio your dispatcher and have her call my wife. I
forgot to tell her I was out here. I'll be home late."
"Sure." Bill went back to his squad and made the call while George waited.
He was not in a hurry to see Mrs. Powell. There seems to be no good way to
tell a woman that her husband has died in a trout stream. The blunt, raw truth
gleams through euphemism and beyond vagueness, it slips past dissembling and
eviscerates tact. She sees it in your sober eyes before you can even say, "I'm
sorry."
And so, after they knocked and she let them in, and she looked expectantly
at them, he just said, "I'm sorry."
Sometimes women weep hysterically, and shriek, and thrash. Donna did not.
She blushed, and the color stuck; her eyes swelled a little, became wet, and she
blinked rapidly and often for two or three minutes and sniffled quietly. She
sat down, and said nothing for a time. They averted their eyes and waited.
What is there to say, but "I regret this happened to you. I'm sorry." She
contemplates a vacant future, now transferred from threat to reality. She will
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discover soon enough that the social security check will be $300 less and the
property taxes the same; that it's even harder to cook for one than for two, and
80% of the motivation is gone. This house, this pleasant rural nest, will now
be a lonely, cold reminder of what she no longer has. She does not yet know
this, but she will sell the place and move to an apartment, either close to her
children or her friends.
To be sitting in her kitchen, her house not cleaned up, with a uniformed
sheriff's deputy and a doctor, sharpens her sense of loss and loneliness and
helplessness.
George said, "Can you tell me about his situation?"
"He wasn't well, you know. He had some kind of blood cancer."
"You don't know exactly what kind?"
"No, you would have to talk to his doctor about that."
"And who would that be?"
"Dr. Williams over at the Greenbriar Clinic in Wausakee."
"Sure. I know who he is. I'll call him. Can you tell me what your
husband did before he retired?"
"Well, he never really retired. He just went on social security when he
turned 65; never made enough extra to make a difference with that. He was in
sales, you know."
"No, what did he do?"
"He started out to go to college, but maybe all that book-reading and
studying didn't seem all that pert'nent. Anyhow, he had one job and then
another doing this and that, and we got married, and he just loved talking and
visiting. He found out about Chippewa Shoes, and he worked for them, just going
from farm to farm and door to door selling shoes. Them shoes is good ones, too,
so he sold a few, and I worked at one job and another, and we got by.
"Then, as he was going door to door, he found out about Watkins Products,
and added that in, which helped some. More home and housewife stuff; people
need that more often than they need shoes.
"He always like tinkering with engines, y'know, and in about 1975 he heard
about this new oil up in Superior, AMS-Oil, it's synthetic, you know; and then
he started selling that. It's kind of expensive, but he liked having a new
line. Some people swear by it and some can't afford it. It was a little extra
for him, y'know.
"One of our friends tried to get him interested in Amway about twenty years
ago, but he didn't like that crowd. Too many meetings, too much talk about how
much money you were gonna make, and all those motivational tapes and stuff. Irv
just liked people, and selling was a reason to visit them.
"He's always been quite the fisherman and hunter. He tied flies and made a
few lures out in his workshop, and sold a few. He bought a big sewing machine
and started making fishing jackets. On a weekend fishing, he'd wear one and
take a couple of others. He didn't very often come home with any."
"What about his health, lately?"
"He's had a pretty hard time of it. He's been blowing and puffing, and his
legs swell up. He's been just setting in front of that TV and getting up to eat
and to the bathroom. I tell him 'Irv, you don't get up and move around, it'll
be the death of you,' and now look what it's done to him."
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"Has he taken any falls, or had any fainting spells?"
"No, but sometimes I been afraid he might fall, the way he lurches around."
"Any other problems like diabetes or heart problems?"
"No diabetes. I think Dr. Williams said his heart wasn't so good last time
we were to see him. That was just a couple of days ago."
George and Bill sipped their coffee. The sun had set, it was getting dark.
George wanted to go home. Donna turned to him and asked, "What do you think
happened?"
"It's pretty obvious that it was his heart. It must simply have stopped.
He was sitting on the bank, holding his fishing rod, and he simply lost
consciousness. There was no sign of injury or pain, or convulsions, and he
didn't drown. I'm sure that his heart simply stopped beating."
"I don't want him to have one of them... them..."
"An autopsy?"
"Yeh."
"Oh, I don't think that will be necessary. I'll call Dr. Williams to be
sure about Irv's diagnoses, and that will be enough. An autopsy isn't likely to
find any more information."
"Thank you."
"Not a problem. Thanks for the coffee. I've got to get back to the office
and finish my dictation. Call me if I can be of any help."
But of course she didn't...
. . .
The next morning Dr. Pettigrew telephoned Dr. Williams during clinic.
"Steve, this is George Pettigrew. Sorry to interrupt you. I'm the local
medical examiner. I need to know what was wrong with Irv Powell, because he
died last evening."
"Oh, really! Well, I'm can't say I'm surprised. I saw him just a couple
of days ago, and thought he should be admitted, but he wanted to try it at home.
What happened?"
"Well, he went fishing, and he died on the bank of the creek. Just went to
sleep and slid into the water. Looked real peaceful."
"Well, I guess that's good. I hear he was quite the fisherman. I can't
think of a better way to go. He had a non-Hodgkin lymphoma that had quit
responding to chemo and was pretty widespread. He had a pretty bad heart, with
congestive failure that was exacerbated by anemia, and some renal failure. He
didn't have much left in him. I suppose he made the right decision. Old Irv
always knew what he wanted. How did his wife take it?"
"Oh, I think it was pretty tough for her, but she seems like a soldier.
I'm afraid this leaves her with a lot of bills."
"Well, if you talk to her again, give her my condolences. Thanks for
calling me."
5487 Words ·
93
Chapter 9
Husband's Farewell
The town is quiet; the ambulance is out on a run. If you were to stand for
a few moments outside this small-town hospital early in the morning -- which
only the exiled smokers do, burning incense to the death gods -- you would
notice the quiet. The 7 am shift has come; the night shift has not yet left;
change has begun, but the day's outpatients have not begun to arrive.
When the ambulance comes, you would at first faintly hear a distant siren,
a small, urgent sound, far away. After three or four minutes -- amazing how
long it takes when you're waiting to see it, how slow the crescendo -- you would
see the ambulance move down the street, lights flashing frenetically, wanting to
rush, but incongruously seeming to creep, toward the hospital.
In the hospital, behind its doors and brick walls, none of this is heard or
seen. Radios in the hospital office and emergency room speak simultaneously,
"Woman down at home, chest pain; first three letters of the last name el yew en;
date of birth oh nine oh two twenty eight. Monitor shows sinus rhythm, rate
ninety six; blood pressure eight five over thirty; ee tee ay four minutes." In
the emergency room, the staff seem to pay it no attention. They continue with
patients or paperwork without even looking toward it. But you might, if you
were watching closely, notice a nurse silently slip into a room and quickly hang
an IV bag and tubing, or see an aid pick up a phone, punch a number, and say,
"We'll need an EKG here in a couple of minutes. Ambulance run," and then return
to another task.
In the office, someone would make a note and head for the chart room, to
see if the letters and birth date resurrect a chart. In fact, if you were to
walk along with the clerk to the file room, you might be told the patient's name
and address before it is looked up, if the ambulance were picking up someone who
comes in frequently.
The radio is a wonderful tool. It lets the ER staff prepare themselves,
array equipment, order their thoughts; a search for records can begin without
having told everyone with a scanner who is in the ambulance.
In the general flow of daily life, someone else's ambulance run is just a
disturbance, a large ripple on the sea of life. Hurried commuters impatiently
slow for it if they notice it at all. The siren clashes with music on the radio
and troubles sleep. But for one or two or a few people, those whom it serves
right now, it is the center of the cosmos. It transports a person and fear to
sanctuary and help. Lun, female: Is this Sue Lunsford, fleeing too late the
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Husband's Farewell
husband who just assaulted her with a two by four? Is it Jerry Lunda, having a
series of epileptic fits that won't stop? No, this happens to be Rose Lundberg,
a healthy, elderly library assistant who collapsed at home in the bathroom this
morning with chest pain.
The radio gives bland, minimal facts. It cannot transmit her fear and
anxiety or show the cold sweat beading on her forehead or the new pallor of her
complexion. It does not mention her husband Dick, sitting near her in the
ambulance, stiff and agitated with terror, staring wide-eyed into the gulf
beyond a long and comfortable marriage, his hands gripping his knees, yearning
to help and helpless to aid.
When they arrive at the emergency entrance, two attendants scurry about,
opening doors, reaching into the back to extract the stretcher and the third
attendant. Who is actually on it is unimportant, trivial; what medical
condition rides upon it is on everyone's mind, their professional attention is
focused on injuries and disease. To know who it is would be a distraction,
although a welcome and interesting one. Dick tags along, swept up with the flow
but lost; everyone's attention is on Rose. Someone directs him to the office to
register.
Two attendants, in dark blue uniforms, their eyes excited, walk briskly
alongside the gurney; a nurse in violet scrubs directs them to a room. "I'm
Susan. How are you feeling, dear?" asks the nurse, simultaneously putting a
tourniquet on her arm and picking up a needle to start an IV, her face
professionally neutral, the IV tubing in her teeth.
"Awful," says the patient, an older woman, probably just a bit over
seventy. It's early in the morning. She isn't sure now whether the intense
tightness squeezing her chest woke her up or started afterwards. She got out of
bed to go to the bathroom for an aspirin, and collapsed in a heap on the floor.
Her husband dialed 9-1-1, and in she came, hurrying and yet creeping in the
noisy, bumping ambulance.
"What's your name, dear?" asks Susan as she ties a tourniquet around the
patient's arm and begins to prep her forearm for an IV.
"Rose. Rose Lundberg," she says. "Where is my husband?"
She's plump. Her face is pale, lined with the wrinkles of a thousand
smiles, but now she is sober, preoccupied, and distracted. She breathes
rapidly. Sweat beads her face and has drenched her nightie. Her hair is short,
permed, grey, and mussed from the bed; she doesn't touch it or mention it.
"I need to sit up," she says, and struggles to arise while the nurse is
still putting in the IV.
"I know, dear," says Susan, struggling to control the movement of her arm
and protect the half-placed needle, "Just a minute here, let me get this IV
started, and we can let you up."
Out in the hallway there is quiet pandemonium. The ambulance attendants
exchange information with the ward secretary, charts are called for, the doctor
on duty is summoned, the registration process is begun, using Dick as the
information source. He is relieved to have something significant to do, even
though this separates him from Rose.
As the IV is being finished, an EKG machine is wheeled up to the patient,
and a technician, a short, slender man with curly red hair and a silver ring in
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Husband's Farewell
his left earlobe, opens the front of her gown and exposes her arms and legs,
then begins attaching little house-shaped bits of adhesive foil onto each arm
and leg, and around and under the lower rim of her left breast. "I'm Jim. I'm
here to get a tracing of your heart. We're just going to put some sticky
patches on you here." Her legs are pale, their skin faintly marbled, the skin
over her kneecaps is blue. She has goose bumps on her shoulders and forearms.
"What is your name, dear?" asks the technician.
"Rose. Rose Lundberg. Is my husband here?"
"Not yet, Rose; he's on his way," the nurse says presumptuously. "Here,
take this aspirin," and puts her arm behind Rose's shoulder to help her half-
rise so she can swallow it with a little water. Rose half rises, swallows the
aspirin, and gasps, "I need to sit up."
The nurse raises the head of the gurney about eight inches and guides Rose
back down onto it. "I know it makes you more short of breath, but you have to
lie down while we get an EKG."
"Relax, dear," says Jim, the EKG technician, "We need to have your muscles
quiet to get a good tracing." It takes two tries, and then they let her sit up
a little further. He asks, "Who's on duty?"
"Dr. Pettigrew," says the nurse. "We've paged him. I think he's in the
building. He should be here in a minute."
There's a new flurry of movement in the hallway outside. A man's voice
says, "Where is she? Where's Rose?" and a woman's voice says, "In this room
right here. They're getting an EKG. Are you her husband?"
"Yes," he says. He comes into the room and stands, carefully out of the
way, near a corner.
An aide says, "Here, sit in this chair," and puts a chair next to him. He
sits, but only for a few seconds, then he stands again, poised to come to Rose,
afraid of getting in the way.
Dr. Pettigrew hurries in, his blonde hair askew, his tie slightly ajar. He
glances at the EKG, and says, "She's got ST elevation clear across the
precordium. Let's mix TPA and start an infusion." He looks at the records of
blood pressure and the notes of the EMT's, and says, "Mrs. Lundberg, I'm Dr.
Pettigrew. This is all kind of frightening, isn't it?"
She nods.
The nurse, Susan, tells him, "her systolic is in the nineties."
"Good," he says, "Do we have some saline hanging?" He looks at Rose. "Are
you still having pain?"
She nods, then says, "Well, it's not really pain. I'm so light headed."
"That's because your blood pressure is low. Your EKG shows that your heart
is distressed. That's why you are so short of breath and your chest feels so
tight. All this strain makes you sweaty and the sweating makes you cold. The
EKG tells me that an artery in your heart is being blocked so that blood can't
flow into the muscle properly, and we're going to give you medicine to try to
open it. Do you have any eye problems?"
"No."
"Have you had any bleeding problems?"
"No."
"Have you had any surgery recently?"
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"No."
"Have you ever had a stroke?"
"No."
"We're going to try to turn this problem around for you. This medication
does rarely cause bleeding or even stroke that can take a person's life, but
your heart is in danger right now, and I recommend we give it to you. It's much
more likely to help than to cause trouble."
"OK." She would say this if he had offered to burn down her house, she
feels so terrible. Not pain, just oppression and overwhelming dread.
Susan says, "Her oh-two sats were a little low on the way in, and they are
OK on two liters. Would you like me to mix some dobutamine in case her BP drops
again?"
More staff come in. Small sleek electronic boxes are clamped to poles and
placed on stands, with glowing displays showing numbers in red neon or green
phosphor, or blue LCD characters, begin to congregate around her. She has IV's
in both arms, and a blood pressure cuff on her left. The tip of her right
middle finger is embraced by a small white plastic oxygen sensor. Round white
adhesive patches adorn her chest and shoulders, and a clear plastic oxygen
tubing divides at her neck, loops over both ears, and joins under her nose,
sending sprouts to tickle the hairs of each nostril. If the room were quiet,
you could hear oxygen hissing through the tubing.
She is sweaty, breathing in small rapid breaths, sitting nearly upright,
distracted. No one is conscious that her gown has fallen beyond her nipples.
The staff talk in phrases of jargon, businesslike, hurried. They make notes,
they move about; she is enthroned on a medical couch; the center of attention
yet unaware of anything but her own distress.
Dr. Pettigrew says, "OK, let's go to the unit," and three people move about
changing plugs and tubing, disconnecting her monitors and oxygen from the wall,
changing everything to portable mode for the trip to the Coronary Care Unit. He
lifts her gown so she's covered and ties it behind her neck.
The gurney and its clinical entourage emerges from its medical garage and
moves majestically down the hallway, a scantily clad elderly monarch borne away
to the temple of the heart, the Coronary Care Unit.
Her husband, Dick, as Rose begins to be moved, briskly steps up and grasps
her hand for just a second. "Honey, I'll be with you," he says, and steps out
of the way.
He's a tall old man, not heavy; sagging in all the places old men sag,
solemn and preoccupied. His hair is wavy and thick, grey with dark brown
underbrush. A little bleb of dark blood marks a razor nick on his left jowl.
Dr. Pettigrew approaches him. "Hi, I'm Dr. George Pettigrew. Are you Mr.
Lundberg?"
"Yes, I'm Dick Lundberg."
"Why don't you walk along with me. I'll show you where you can wait, and
I'd like you to tell me what you saw at home. Rose is a little too busy to give
me all the details. It would tire her out."
"I can't tell you very much. Rose isn't one to complain much. I don't
think she felt well this morning, but that's just because she was just acting
different. I was making breakfast when she got up, but she didn't want any. I
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Husband's Farewell
asked her if she was sick, but she just said, 'Something is giving me
indigestion. I think I might be coming down with the flu.' Then she went
toward the bathroom and I heard her call from the hallway. She said she just
felt like she was going to faint and so she sat down. She looked real pale, and
I just called 9-1-1. She didn't want me to."
"Does she smoke?"
"Never."
"Has she had a blood pressure or cholesterol problem?"
"I don't think so. But she only sees a doctor maybe every couple of years
or so. She's been pretty healthy."
"Does she have diabetes?"
"No, but her mother did. I don't think Rose has high blood sugar, but I
think she has talked about low blood sugar spells for years."
"Any heart attacks in her family?"
"Hers? Ummm... Well, heart took her mother. I think her dad had some kind
of stroke. Oh; and she has a brother out West who had some kind of heart
surgery about three years ago. A younger brother."
"Who's her usual doctor?"
"I don't think she has had one since Dr. Elleson retired. She's been
pretty healthy; oh, the usual aches and pains...she don't complain much."
"So she hasn't had any medical problems. Has she ever had any surgery?"
"You mean operations? Oh; let me think; she had her gallbladder out maybe
twenty or thirty years ago. I don't recall if there's anything else."
"Do you have any children?"
"We have a son and a daughter. She lives out of state." He pauses; Dr.
Pettigrew doesn't ask another question, so he ventures, "Can you tell me what's
wrong?"
"Surely. She's lightheaded and short of breath because her heart has been
weakened. This is a heart attack, and it's usually caused when an artery that
supplies blood to the heart being blocked by a clot that has formed. We give
medication to try to dissolve the clot, and we give medication to raise her
blood pressure if we need to."
"Should she go to a larger hospital?"
"Yes, she could, but not right now. Her blood pressure is low, and she's
pretty distressed. We're a long way from Metropolitan Heart Beaters. If we use
a helicopter, it's an hour to get here even if they are ready to leave when we
call; it takes more than half an hour for the crew to get her loaded and ready
to go; it's another hour back, and then she still must be evaluated and gotten
ready for a heart cath. She can't afford to be out of a hospital for the two
and a half hours the transfer would take."
"So she's pretty bad."
"Well, I don't want to sound too pessimistic. She is in a difficult spot.
She needs to improve in order to pull through. She needs to have treatment
right now, not just transportation. And we need to be sure that the trip will
be worthwhile for her."
"We have Medicare, but we don't have insurance. I 'spose those helicopter
ambulances are pretty expensive. Could she go in a regular ambulance?"
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"You're right, they are. Why don't we wait and see how things go for her,
and decide that later. Here's the Family Room. One of us will come and let you
know when we've got her settled and ready for you to see."
"Thanks, doc. Take good care of her."
The doctor disappears into the Unit behind the cavalcade and the gurney,
and Dick sits in the lounge. He fidgets, he looks at the magazines one at a
time, opening some and looking, but not reading. He looks at the TV in the
corner, sees cheerful mindless people, and walks over to it and turns it off.
He sits again. He stands and paces, then sits. At length he notices the
telephone, and moves to it. He picks it up. He dials a number, waits, makes a
face, hangs up. He does this three times, then stops and stares intently at the
phone for a full minute. Then he grunts, and picks it up again, punches the
"O," and waits. Then he speaks. "Operator, this is Dick Lundberg. I'm up here
in the Family Room. My wife is having a heart attack, and I'm trying to call
the kids. How do I make this thing work? ... OK. ... Let me see... Hank's
number is... ... Yes, in this area. ... Oh, I'm sorry, I'm just having trouble
thinking of anything right now... Um, 283... ahh, 7964. ...Thanks."
He waits to be connected, then says, "Bonnie? ... Hi, this is Dick. I'm
over at the hospital with Rose. ... She went down this morning and I called the
ambulance for her. ... No, she didn't break anything; they think it's her heart.
... Well, it seems to be pretty nip and tuck. They've got her in intensive
care, and her blood pressure is low. ... Has Hank gone to work yet? ... Sure,
yes. Call and tell him. ... I don't know if he should come or not. If she
does well enough, they'll probably send her off to the heart center in Fairfax.
... No, I don't know when. ... Well, there's not much to do here but drink
coffee and read old magazines. He can come up if he can get off. ... Say, could
you call Marsha for me? I don't understand these phones here, and it's long
distance. ... Thanks. ... No, I'm sorry; I didn't even think to get the number
here. I'm a little rattled right now. I'll figure things out and call later.
Thanks ... I love you, too. Bye."
He hangs up the phone and sits again, restlessly. After awhile, a woman
edges through the doorway. "Oh. Excuse me," she says, seeing him with his head
in his hands.
"No, come in. It's the waiting room. Do you have someone in intensive
care, too?"
"No, my husband is having surgery. He's having a new knee put in."
"Oh, I'm sorry. Excuse me, I'm Dick Lundberg."
"I'm Shirley Castleman. Don't I know who you are?"
"Maybe. I'm the barber on Plum and 4th."
"Oh, sure. You cut my husband's hair sometimes."
"Don Castleman?"
"Yes."
"Oh, sure. Nice to meet you."
"Do you have someone in intensive care?"
"My wife, Rose. They tell me she's having a heart attack."
"Oh, my, I'm sorry. Has she had a bad heart?"
"Not that we knew. She just took a spell when she got up this morning, and
I had to call the ambulance."
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Husband's Farewell
"How is she doing?"
"I don't know exactly. It must be serious, because the doctor said she has
to get better to stand a transfer to Fairfax."
"Oh, that's too bad. I hope things turn out all right for her."
"Thank you."
They lapse into thoughtful silence. If Shirley could say what was on her
mind, she would blurt out the sudden terror this news excites in her for Don's
safety through his own surgery. He's had a little heart problem, and a touch of
diabetes, and he just won't quit smoking completely. But to confess her fright
would be embarrassing, and it might upset Dick, and you don't go crying in front
of strangers. She picks up an old magazine, opens it, and reads it mindlessly.
Dick, too, is full of thoughts, about Rose. Their long marriage suddenly
seems short and hurried. They married just a little bit late; he'd been to
barber school and then got drafted, made extra money cutting hair in the
service. He got out and had a chance to go in with old Elmer Billings on Plum
and 4th, and he took over after about ten years when Elmer retired. Elmer's
been gone twenty years now; can't remember just what took him.
He says, "Y'know, I met Rose when I went to visit my brother in Clear Lake.
There was a church supper, and she was just such fun to talk to. I never even
asked if she had a beau. I called Elmer and told him I wouldn't be back for a
couple of weeks. I already knew this was the most wonderful girl I'd ever met,
and I wanted to get to know her a lot better. I still don't know what she saw
in me. Maybe it was just hormones, but it's worked out pretty well. I can't
imagine living with anyone else."
"Not many marriages last that long any more."
"No. It was 56 years in August."
"Congratulations. It'll be 43 for Don and I."
"Good for you."
If he could speak his deepest thoughts, he would talk about how much he
loves Rose, and what a great person she is. But we don't say these things to a
stranger, and hardly ever to each other. It would feel like an obituary, or a
eulogy, something he won't let himself think about right now.
Instead, he thinks about their life together, comforts himself by
remembering her.
The Rose he married was a quiet, serious, lovely girl with a sweetly subtle
sense of humor. He still quite clearly can feel his almost possessive sense of
need to be with her, his intense enjoyment of her company. He was a barber, a
simple man; she was a librarian, full of books and their imagery; but instead of
putting down his lack of education, she saw something in him of which he was
unaware and gently led him into the land of books. It took awhile for them to
get pregnant, and they were only able to have two kids, Hank and Marsha, about 6
years apart.
Until Hank came along, nearly every evening she would sit with him for an
hour or two before bedtime with a book. Their book time, they came to call it.
At first she would read to him; a chapter, or poetry. And while she read, she'd
explain what the author was trying to say, or tell him some bit of history about
the book. She taught him how poetry was constructed, showed him how to
understand plot, helped him to appreciate biography and history. She loved
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books, and he came to love them, too. After a few months, she started bringing
home books that explained things that mystified him, nonfiction books that
explained how things worked. They bought a few good books, but the city library
was their library, more vast than they could ever afford to own.
When Hank started to talk, book time changed, became simpler. And it got
simpler yet when he started to read, for Rose brought home books he could read
out loud to Dad and Mom. She led Hank and then Marsha into the land of
literature, and explored it with them until they were in high school, and too
busy with homework and activities and the need for independence; and then book
time sputtered, fell apart, and became just another lost tribal tradition.
She was a church-goer; he had not been. She liked church, and so to please
her he went along. It was a little strange to him, just a little Bible church
with less than a hundred people. There wasn't any fire and brimstone, and just
enough tradition to keep a group functioning. He slowly grew to like it himself
because of the people. They were kind, and interested in you, and they really
tried to practice what they believed. They had their faults, mind you, and
personality conflict sometimes made sparks, and once in awhile a controversy got
tense, or a family left. But they were sincere, and not pushy, and after a long
while it dawned on him that he'd been converted.
It's not that she was perfect, and God knows Dick wasn't. It seems as if
they grew up along with the children, though differently from the children.
They butted heads, and it took him years to trust her judgment on things he
didn't understand. She tried to do the bookwork for him for a few months after
Elmer passed away, but the route to peace was hiring an accountant. After
Marsha started school she went back to full time hours at the library, and they
didn't try again to work together.
He wants to talk about this, to tell it to Shirley, to tell her how this
lovely girl, that hormones and curiosity impelled him to possess, slowly became
precious to him for her inner character and not for her beauty or for what she
gave him. Her body, young and trim and tight, had slowly turned into a
collection of pillows and slackened. And meanwhile, graciously, what was
important to him about her evolved from what he wanted her to be into what she
was.
Instead, he says, "She's a good person," and Shirley just says, "Scary,
isn't it? Here we are, two old people, sitting in a small room wondering if a
big door is about to slam in our faces." He nods. He feels a little teary, and
decides to quit talking for awhile.
. . .
In the Unit, doctor Pettigrew is talking to Rose and examining her, the
nurse is busy setting up the monitor and the oxygen. She starts another IV,
hangs bags of fluid. She places a blood pressure cuff on Rose's arm and an
oxygen monitoring probe on her finger. Rose is beginning to seem sleepy.
"Rose, I'm Darlene. I'll be your nurse this shift. There's going to be a
lot of tubes and noises, but the most important thing is how you feel. I want
you to tell me how you feel, any time you notice anything. Don't wait to tell
me about the important things, tell me about everything, and I'll help you sort
it out. How is your pain now?"
"It's not pain. I'm just so tight and gassy. And it's hard to breathe."
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"OK, we're giving you some medication to try to help that. And your blood
pressure is low. We're going to give you some medication in the IV to bring it
up a bit."
She says to Dr. Pettigrew, "Are you going to want a Foley to monitor her
output?"
"Yes, but let's wait until she's comfortable. Is the TPA in?"
"Yes, and the dobutamine is started. I gave her just a touch of MS, too.
She seems a little more comfortable."
He goes to the desk and works, writing Rose's admitting orders, then
reviewing her slender old chart, and dictating an admission summary. Darlene
shuttles back and forth, sitting for a moment at a time to make a note or read
an order, continually interrupted by the telephone, repeatedly going back to
Rose and the equipment surrounding her, checking her other patient, a man
watching TV in the adjacent cubicle. Dr. Pettigrew leaves and returns with Dick
Lundberg, who sits by his wife holding her hand, staring at the monitor's
numbers and the rhythmically flipping lines that show her heart's steady beat.
At long intervals he murmurs a phrase, she murmurs a word in reply. Soon, more
than two hours have passed. Darlene's pace has slowed, is no longer frenetic;
Rose seems more comfortable.
Dr. Pettigrew returns. He stops at the desk, checks the vitals record for
Rose's blood pressures and other numbers, checks the record of her rhythm.
Another EKG is done. He examines Rose, listening to her chest front and back
with his stethoscope, asks how she's feeling. He and Darlene convene at the
nurse's desk. He says, "Have you seen any evidence of reperfusion?"
"No, she's been in sinus the whole time. Hardly a premature beat. And her
ST segments haven't come down at all."
"Well, her EKG hasn't changed either, except that Q waves are developing,
not just across the precordium, but in a couple of the inferior leads, too. She
must be having a massive MI. I see her blood pressure has been drifting down."
"Yes, and I've been turning up the dobutamine. It's way up to 25 mics, but
her systolics are only around 80 and she's getting tachy."
"Too bad. Well, I'll talk to her and her husband."
Doctor Pettigrew goes to the bed and draws the curtain. Dick says, "I'll
step out."
"No, stay. I should tell you both where things are at." A pause, a deep
breath. His eyes are shifting around, looking at the monitor, at the IV's, at
Dick, at Rose, at the bed. "This isn't going as well as we'd like." He looks
at Rose. "I'm sure you've sensed that."
She nods sleepily. Dick is sitting erect, his eyes alert. He looks at
her, then at the doctor, then back again. He's a little pale.
The doctor says, "The reason you feel like you do is that you are having a
heart attack, and the muscle of your heart has been severely weakened. We've
tried to open up the closed artery with medication, but that hasn't worked, and
the part of the heart muscle that is still contracting well is not enough to
keep your blood pressure up, even with the medicine we're giving to stimulate
it."
Dick asks, "What can you do?"
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"We're doing what can be done. If that artery doesn't open up, if the
blood pressure doesn't come up, this just isn't going to come out
satisfactorily."
"So she's not going to make it?"
He nodded. "Possibly not. We can't know for sure, but something really
good needs to happen soon."
Rose's eyes slowly open and drift shut, open and shut, in ponderous slow
rhythm as they talk. Dick says, "We don't want any machines." Rose nods.
"Ok."
"Can I stay with her?"
"Yes. If the nurse needs you to move for some reason, she'll tell you."
"Thank you, doctor."
"You're welcome. If you think of anything you need, just ask."
Doctor Pettigrew slips around the curtain and goes back to the desk. He
begins writing a progress note; Darlene comes back from the other patient and
resumes charting.
. . .
On the other side of the curtain, Dick stands, bends toward her, and kisses
her gently on the forehead, and then the lips. Then he steps back, puts his
chair at her side by her waist, facing her as she lies half-recumbent, weak,
drowsy. He sits silently for many minutes holding her right hand in both of
his. The monitor glows above her head; the IV pump quietly clicks. The
automated blood pressure cuff hisses as it inflates and sighs as it
decompresses. Every few minutes Darlene comes to Rose, checks her IV's and
tubing, her pulse and her breathing. She's no longer so short of breath. She
is slumberous; Dick is pale, alert. He watches Darlene's every movement
intently. She puts a cool washcloth on Rose's forehead. As she comes close,
Dick stands and steps back. "Excuse me," he says.
"No, you're not in the way," Darlene says, "You belong here."
He sits again, and looks at her, raising his eyebrows quizzically. She
shakes her head slightly. She reaches down and squeezes his shoulder slightly.
"It's hard, isn't it. So much happening and nothing you can do to help."
Rose drowses.
"Yes," he says, "I don't know."
Darlene goes back to the desk and writes again. Dr. Pettigrew comes back
in and they talk quietly. He comes toward Dick and beckons to him. They walk
to the other side of the unit and talk quietly.
Dr. Pettigrew says, "We just aren't seeing any response to the medications.
I'm glad she's comfortable, but this process that's troubling her is going in
the wrong direction."
"Will she make it?"
Dr. Pettigrew pauses, then says, "I don't think so."
"How long?"
"I don't know; an hour, maybe two."
Dick is silent for a long moment, looking at the floor. Then he looks at
Dr. Pettigrew and says, "I'd like to be with her."
"Yes, of course."
"Can I have a minute alone with her?"
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"As much time as you want."
Dick walks back to her bed, to the end of the earth. He sits slowly down
in the chair and takes her hand gently in both of his. He looks intently at
her. Dr. Pettigrew draws the curtain and walks back to the desk.
Rose opens her eyes and looks at her husband.
"Rose," he says, "I love you. "It's gonna be hard without you."
She squeezes his hand slightly.
"Rose, the Lord is taking you home, and I want to talk to Him about it."
She nods just perceptibly.
He bows his head slightly, and says,
"Lord, thank you for this woman.
Thank you for the life we've had together.
Thank you for the children she's borne;
Thank you for the times we've had;
Thank you for being our Savior;
Thank you for teaching us to obey You.
Lord, I give her to You.
She is Yours,
and she belongs with You.
Lord, be kind to me.
May Your will be done.
In Jesus name, Amen."
He lifts his head, he rises, leans forward, and kisses her again, gently,
then sits down and holds her hand. She seems very tired. They have a slow,
desultory, murmuring conversation for about half an hour, about some things
undone, about the children, how she feels. She sleeps.
. . .
He sits by her bed, getting up when the nurse comes to check her, but
otherwise just holding her hand, watching, murmuring, for two more hours. Her
blood pressure slowly drifts down. She sleeps, and then she dies: Her
breathing slows, becomes peaceful, then becomes irregular, with great long
pauses, and stops. The flipping line on the monitor at first speeds up and then
gradually slows, and widens out. The monitor alarm rings insistently at the
nurses' desk for about five seconds, until the nurse can reach down to silence
it. Then she comes over to Rose and checks her. She turns off the monitor and
the IV pump. She lays her hand on Dick's shoulder and says, "I'm sorry. If
there's anything you'd like us to do, please tell me."
He says, "No, thank you. Do I have to go now?"
"No. You can stay as long as you like. Do you know which funeral home I
should call?"
"Kraemer's."
"Would she be interested in organ donation?"
"Oh, yes. She talked about that several times."
"I'll just clean things up a bit, and then you can be with her as long as
you like." She takes away the tubing and disconnects the wires, wipes Rose's
face, and straightens the bedclothes. Then she turns down the lights, and pulls
the privacy curtain, and goes back to her desk.
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Afterward, he feels disconsolate. He is alone, really alone, for the first
time in his life. He feels a mental numbness that will not begin to dissipate
until after her funeral. He embraces her still-warm body, and weeps. After a
few minutes he rises. He turns and slips past the curtain, out the of coronary
care unit, back to his newly vacant life.
5994 Words ·
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Chapter 10
Afterword: Good Death
The deaths in these stories occur within good relationships. This is why
the title of this book. It is a common thread, not a moral. Death is a physical
event, but more significantly, death is a social event.
Though it is the most important social event, we Americans handle personal
death awkwardly. We try to ignore it; we spend billions to postpone it; we deny
it will happen; to speak of it is a social gaucherie. The sick and the
crippled, who remind us of death, are hidden within institutions. Meanwhile we
are mesmerized by impersonal death: murder mysteries and horror novels fill
bookstores; blood-and-gore movies draw millions; the most popular computer games
are the violent killing games; bizarre and violent deaths always make the
evening news.
This is not new. Twenty years ago, driving in my car, I caught a British
author being interviewed on American radio on the subject of end-of-life medical
care. He said, "Americans are the only people on earth who think that death is
optional."
He was not being purely sardonic. There is a cultural impetus that makes
personal death taboo. For more than twenty years I've practiced internal
medicine, listening to people as they sit in my exam rooms and talk about their
expectations for their health; often the only possible subtext for their
questions is a presumption that their present state of decent health can be
extended indefinitely. A continual irony for physicians is that though society
demands that we not "play god," individuals daily ask for miracles in our exam
rooms. Thus pessimistic prognosis is often met with a request for a second
opinion, or may be followed by a change of doctors. We learn quickly not to
tell the frank truth about the course of disease and to cloak asked-for news
with euphemism and pretended uncertainty.
This taboo hinders closure of relationships and fosters illusions. We
physicians belong to our own culture, and we participate in this cultural denial
in complicated and interesting ways.
We lie to patients to "preserve hope." And when we do not, we are often
criticized for being too blunt or unsympathetic.
We all, as patients, need to know both what is fairly certain and what is
unpredictable; we physicians generally fail to communicate this accurately for
many reasons: insufficient time, inadequate educational materials, the patient's
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ignorance, fear of an emotional upset from the patient or their family that
consumes scarce professional time and energy -- and our cultural taboos.
Despite our cultural tendency for denial, we yearn for truth even while we
recoil from its pain. We need to know at least enough to plan and to bring
important responsibilities to closure. Either physicians and families may
hinder this.
For example, adult children often hinder closure. They may ask the
physician not to talk of death with an ill parent because "we don't want her to
feel bad." This is especially true for children who have been estranged or
absent. This creates friction when there needs to be only love and harmony. A
pattern that is stereotypically common is for the in-town children -- who have
been daily caring for their parents and seeing suffering, degrading loss of
independence, and discouragement -- to see death as a merciful resolution; while
the out-of-town children lobby hard for "everything" to be done to prolong life,
with little regard for, and little awareness of, the burden and suffering this
brings to the parent.
This oversimplifies, to make a point about cultural proclivity, the wide
differences of perceptions and worries among individuals on these matters of
end-of-life care, both among patients and among professionals. Individuals
struggle against cultural influences, habits, and taboos, that hinder us from
confronting frankly death and life-threatening disease and from resolution of
differences.
We need to conquer this culture, to feel permitted to talk about death and
its effects on our relationships with our intimates, for we need to do it for
the sake of our relationships.
These values affect, for example, our approach to cardiac resuscitation.
The rule taught here is, no one but a physician may stop CPR unless the provider
is physically exhausted and unable to continue. This is a legalistic stance,
not a pragmatic one. The layman who can discern when a squirrel in the road is
dead, is forbidden to make the same judgment about a person. The truth is that
common sense is not often fooled.
In fact, resuscitation is usually futile, a gesture. It is predictably
successful only if a person is seen to go down -- the "witnessed arrest." It
fails to preserve intellectual function unless a good blood pressure is restored
within less than five minutes. It fails to restore people with pre-existing
major illness to good health.
Physicians are not required by law to provide futile care; common sense
would suggest that in CPR courses we teach lay people not to bother with CPR in
"unwitnessed arrest," or for people with incapacitating illness. Instead, we
pretend that everyone is resuscitatable. We do this for many reasons, only one
of which is that rarely someone wrongly decides not to try. Instead of teaching
judgment, we mandate wrong decisions, subjecting many to inappropriate CPR.
It's as if we should celebrate the end of life with a 9-1-1 call; an invasion of
privacy, a mess, an expense, an interruption of grieving and of consolation.
Another irrational cultural value is that everyone's life must be extended
until all technological resources have been exhausted. This masquerades as an
ethical value, but it is a business ethic. Some years ago a nursing home
administrator quoted a colleague as saying, "We resuscitate everyone in our
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home. It keeps our beds full, and the sicker patients generate a higher
reimbursement rate." To mandate resuscitation as the default treatment as we do
in all hospitals and most nursing homes generates income: it prolongs hospital
stays, generates collectible billings, and through its incomplete successes
creates cognitively helpless nursing home residents, a source of revenue. No
medical institution customarily asks itself about each patient, "If this person
would have a cardiac arrest, would it be kind and appropriate to attempt
revival?"
It is not possible that the doctor's main goal can be always to "save"
life, because there is an end to every life; it is at best possible to prolong
it, or to prevent disability. Does this seem trivial or tautological to you?
It does not seem so to the families of patients severely injured by accident or
disease.
"Education" by the doctor can reduce "expectations" to a realistic level,
but the moral responsibilities of the family and the physician are nevertheless
heavy. Medicine and surgery often rescue people from severe illness or injury,
and our society has grown accustomed to this. For the doctor to say that rescue
is impossible is to completely reverse an ingrained mindset -- a shock and a
surprise -- and instead of expected hope is offered disaster.
On top of this crushing weight we usually add another burden the family is
asked to make a decision not to treat -- not to do CPR or feed or to discontinue
a ventilator. It is a kindness if the doctor lightens this burden by accepting
responsibility, professionally, for medical judgments and decisions. We too
often shift end of life decisions onto the ill-prepared families of patients.
Because of America's great diversity of philosophies and faiths, those of
the doctor, the staff, the patient, and the family are seldom consonant. The
nature of conviction is such that it is impossible for a doctor to be purely the
servant of the patient and family.
For example, at one hand is the Orthodox Jewish doctrine that to fail to do
everything possible to prolong life, except within three days of certain death,
is to murder. At the other hand is the casual belief of some that one's life,
if it be annoying or painful or useless, may be thrown deliberately away. In
order for the physician to take responsibility for an end of life decision,
these differences must be understood. Our taboos hinder resolution of such
differences.
To acknowledge the imminence of death is not to provide or recommend
euthanasia. I sometimes kid my well patients who are annoyed with some chronic
condition, "Well, shall we take you out behind the barn and put you down?" Or
they'll kid me: "I'm ready for the fox farm."3 But we do not put people down,
nor away; Dr. Kevorkian is not and never was a clinician; I've never met the
clinician or patient who wanted deliberately to end human life. But we fail,
generally, to acknowledge frankly when restoration of health is impossible.
-----------
3. The "fox farm" is not the place where they put insane people; it's where
foxes were raised for fur, where the carcasses of old horses were taken after
they'd been put down.
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To practice medicine was for centuries a struggle to ease suffering and a
vain search for cure. We have had morphine, "God's own medicine," as Osler said
succinctly, for only a bit more than a century. Effective, safe surgery has
been with us for only about as long. True cures have been reliably possible
only with bacterial infections, and only for about a half century. These
successes have become the paradigm for cultural expectations. How quickly, in
the scale of generations, has this changed presumptions about medical care.
We physicians from training necessarily focus our attention on rescue,
rehabilitation, and cure. This becomes a powerful intellectual habit as well as
a moral force. To perceive when death has become inevitable or to recognize
when it has become the preferable course involves a profound shift of goals. It
is difficult to detect when death is truly near, for the body's powers of
recuperation are resilient and make no announcements to us.
In fixating on treatment, recovery, and cure, we lose sight, sometimes, of
the primacy of relief from suffering and of the utility of life. When we do,
the patient suffers -- emotionally more than physically -- and each family
member suffers vicariously. It is possible to prolong physical life with
respirators and IV's, feeding tubes and antibiotics, for years after the
cessation of intellectual and social life.
We do this often. For what purpose? Our nursing homes house many people
saved for a useless, difficult, vegetative life by various kinds of medical
resuscitation or salvage. In California there are whole wards of near-drowning
victims "saved" by aggressive modern resuscitation, which often preserves the
heart but not the brain. In our nursing homes are warehoused at great cost many
elderly people who are unable to function in any meaningful social or
intellectual way, "saved" from stroke or pneumonia or other life-threatening
disease.
We should admit the obvious and face squarely the choice of guaranteeing
comfortable death rather than continuing, as we usually do, to cruelly provide
limitless treatments, especially for the frail elderly whose recuperative powers
have been eroded by physical senescence, and for the severely brain-injured who
have no hope of resuming normal occupational and social participation. We need
to provide comfort to the patient; we need to provide it also for the family,
including the cold comfort of knowing it's over.
The prospect of death affects our social relationships profoundly, it
awakens our deepest emotions, and makes us reexamine our lives. For the mature,
oncoming death focuses attention on social relationships and spiritual well
being. No one welcomes death, but to come to terms with it, and to be able to
bid farewell to others, to arrive at the end with a plan, is a great gift to
those left behind.
Our society is stampeding away from death while our population ages,
embracing an epidemic of futile care in America. We offer, and patients accept,
expensive and arduous treatments for disease with little probability of
meaningful extension of life.
Great strides in medical science have permitted us to alter for whole
populations the risk of specific disease, especially infections. This has
engendered the rhetoric, "disease prevention," and when preventive measures were
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discovered to prolong life expectancy in general, this blessing was
transmogrified into "preventing death."
This focus on preventing death occurs partly because the morality of our
society makes autonomy its most important moral standard, so that no one is
permitted to make any decision on behalf of another; and it occurs partly
because we refuse to acknowledge death as proper, normal, and inevitable.
If the theorem is "Death can be prevented," its corollary is "Senescence
does not kill." We who remain healthy still face senescence, aging. Sometimes
a patient will say, "Keep me from getting old, doc!" forgetting that we only get
old if we fortunately escape premature disease. Senescence comprises changes in
cells and tissues with age that amount to a general degradation of resiliency,
strength, and integrity that occur insidiously.
Many old people are in vigorous good health. Nevertheless, even if they
escape disease, there comes a point at which the body just seems to disintegrate
generally. This is a striking process, taking only about two or three years.
Senescence occurs even in those who have complex and chronic disease. Some
patients -- with every disease process ideally treated, with every physical need
cared for correctly in a fine nursing home, with attentive and caring family and
friends visiting often -- die of what is unmistakably senescence. Physical
resiliency and energy, mental spunk and interest, all abate inexorably until
there is nothing left, and the person dies.
Yet we physicians are forbidden to write as cause of death on the death
certificate, "old age." Frustrated by this prohibition, I wrote "physical
senescence" instead for a few deceased patients when it seemed appropriate and
listed their diseases as "contributing causes not directly resulting in death."
Eventually someone at the State Department of Vital Statistics caught on to this
little joke, and I received a bureaucratic letter stating that I must fill in a
disease.
That no one dies of old age is a presumption, not a fact. Pathologists
have a pseudo-joke, "No one dies of old age; everyone dies of a disease."
Nevertheless, after the autopsy it is sometimes a struggle to assign one of the
uncovered abnormalities as "the" cause of death. In a parallel universe, when
younger people die suddenly, often no abnormality is found. As the use of
"sudden death," an accurate description as a cause of death, is forbidden,
"ventricular fibrillation," a presumed but unknown mechanism, is written.
Precision has been falsely added, accuracy thrown away.
Is it an extension of our cultural blindness to death that we refuse to
accept aging as a cause of death? This is a philosophical stance, not a
physiologic one. In the end, the prohibited garbage diagnoses are simply
replaced by others. This is chiefly "atherosclerotic heart disease;" if the
patient died with a fever, it is "pneumonia," "sepsis," or "urinary tract
infection."
Our cultural blindness to the reality of death thus causes us to behave
strangely with respect to health and disease. The principle that we should not
think of, prepare for, or talk about death ironically enhances our fear of
death, our inability to come to terms with it, or to accept it; this leads to
credulous naive faith in new pharmaceutical wonders and technological marvels,
in a belief that there may be a cure for cancer.
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This blindness impoverishes us. Yet it is not the heedless expense of
futile medical care that creates the greatest impoverishment, for in the large
scale the economy thrives with expenditure; and perhaps it is better to spend on
health care than on gambling, snowmobiles, or veal. This blind taboo on
contemplating death impoverishes because it starves our relationships and warps
our own priorities. We need to bring closure; we need to grieve with the ones
we love before they are gone; we need to seek for and to understand the
significance of death in our relationships.
We plan months for a wedding, we celebrate births, we commemorate
retirements. But we have funerals after death. We wait until people are gone
to talk about all their good, their significance, their value to us. I know; a
wedding date can be set, death is not so predictable. But most people do not
die unexpectedly, they slip gradually into the swamp, and this is usually more
evident to themselves than even to their doctors.
We should pay our respects to the aged, the infirm, or the ill long before
they die. We should do this not in order to close the door on the relationship
and walk away, but to begin a long twilight, one in which we acknowledge the
coming night and treasure the fading day. It should be culturally OK for
everyone to admit the obvious and go on with what is left of life. We should
have the memorial service when the fatal prognosis is discovered, while the
praise can be appreciated by the person we so value.
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Chapter 11
Author's Notes
The stories in this collection are all drawn from experience, and more or
less fictionalized. The medical events are faithful to real life; the people
have been altered, but are like the people in my culture.
1. Nitro (Page 1)
A nice old man was referred to a major cardiac center, where he died after
angioplasty. His wife came in some time later, guilt-laden, and said that
she had been with him when he developed chest pain the morning after
angioplasty. She confessed that she had refused to give him the nitro
they both knew was in her purse because the nurses had commanded her on
admission not to give him any, and told me that his last plea was, "If you
don't give me a nitro, you'll be living alone."
Some time later I wrote this story to commemorate her; years later I
confessed to her that I'd written the story. But I was embarrassed to
show it to her because I'd invented these fictitious characters and given
her life to them. It took her awhile to weasel the story out of me. Some
weeks afterward she came back and said, "I read your story. Thank you for
giving it to me."
"How was it?" I asked.
"That is exactly how things happened," she said, "How did you know?"
It was a surprising and humbling compliment. We medical professionals
have many rituals, but we're aware of them only if we pay attention to
them. That is how it had to have happened.
2. Euthanasia (Page 10)
This story recapitulates a memorable, somewhat brainless argument between
a pharmacist and a doctor about the appropriate use of patient-controlled
analgesia. Many of the details of this particular story are the result of
a chance meeting with the real-life mother of this child years later, and
she gave permission to include them here.
3. The Jensen's Nursing Home Adventure (Page 22)
Frances Jensen's real-life model is a woman of unusual courage and
pragmatism, with inimitable integrity and devotion. Nursing home staff
are rarely as obstreperous as those she encountered, but it can happen.
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4. Struggling (Page 30)
It is all too typical that when Mom dies, that the out-of-town chldren
come riding in on their white horses, intent on getting Mom fixed up and
back to what they remember as Normal Mom. They tell the nurses and the
doctors what to do; they look down their noses at the backwardness of
Mom's local professionals; they are confident that the key to restored
health and independence is surely available if the local doc only knew
what he ought; there is no end to the tests and treatments they are
willing to put Mom through in order to have her back.
Meanwhile, the local children who have been with her often and have
watched her age have gradually adapted to the fact that she is failing and
is approaching her natural death. They are derided as fatalistic,
uncaring, and ignorant of medical advances.
From case to case, the details of this drama differ; the themes are the
same; in the end it is Mom who pays -- financially and with her suffering
at the hands of us physicians. This story is a fictionalized account of
one such. Names and occupations are changed; the details of many
conversations are invented; the conflicts and medical events are related
as they occured.
5. Peace (Page 55)
This story arose from the experience of a man who came in many years ago
to find out why he was losing weight. Extensive testing showed he had
irremediable disseminated cancer. He said, "Doc, I only have one thing I
want to do. Some of my family haven't spoken to each other for thirty
years. I have no idea what the problem was, but I want to see them at
peace before I go."
A couple of weeks before he died, I asked him if he'd had any success with
his project. He said, "Yes, my two brothers came home last weekend, and
spoke to each other for the first time in thirty years."
6. Kindness (Page 63)
I thoroughly enjoyed the person Alan is modeled after, and after a
disagreement about his care at the end of his life, wrote this story. The
nurses in this story who disagree never have a confrontation with each
other for many reasons. First, nurses aren't always aware they disagree,
as in this story Jeannie probably never is told that Martha is upset.
Second, nurses know they have little power, so they resolve disputes not
by struggling with each other, but by sending them on to the supervising
nurse (for nursing decisions) or the attending physician (for medical
disputes) -- or each nurse waits until a doctor is on call who has
agreeable biases, and then obtains the desired order. In real life, the
doctor often serves unwittingly as deus ex machina for the nurses.
This reminds me of a remark my mother, herself a nurse, made when I was
about 12, after listening to her teenage housekeeper tell of plans to
marry a particular boy. She said, "I feel sorry for men. They're so easy
for women to manipulate; they just have no idea what's going on." She was
commenting on romance and the pursuit of men by women, but men are still
men when they're doctors; with above-average intelligence perhaps, and
better educated, but still unsuspecting of feminine wiles.
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7. Obituary (Page 74)
This story presents a difficult moral dilemma, in which a doctor, in order
to spare a family hours or days of agony watching Jim twitch and bubble,
arranges, by giving a paralytic drug, to fulfill their ignorant faith that
when you "pull the plug" death follows immediately. Some people would
consider his act unethical.
8. Fishing (Page 84)
The author of this story was at one time sentenced to hard labor as a
medical examiner. This story is based on one of his first cases.
9. Husband's Farewell (Page 94)
Years ago, before TPA, the "clot-busting drug," was available and when
angioplasty was just beginning to be useful, a woman was admitted with
acute myocardial infarction and cardiogenic shock. Intra-aortic balloon
counterpulsation was unavailable, and in any case its use was then very
controversial; it was quickly obvious she was dying. I told her husband
as carefully as I could about this. His response was to go to her bedside
and offer up the prayer I quote in this story, which I will never forget,
a poetic jewel for which I have invented this setting.
10. Afterword (Page 106)
This is a subversive essay protesting some of the irrationalities of
American culture, from a doctor who has observed it and labored within it
for twenty years. Yes, it's a rant.
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Copyright (C) 2000, 2005
Daniel L. Johnson, MD
301 Red Cedar Street
Menomonie, WI 54751
johnsondanlATuwstout.edu
johnson.danlATmayo.edu
48101 words
Printed October 12, 2005