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


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									   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.


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									   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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     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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     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.
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				       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


				       22
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


				       23
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.
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				       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.



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								      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 thems