Its getting harder to
die
Thats how Patty McCarty describes a young
physicians efforts to prolong her dying mothers life. McCarty first
wrote about her relationship with her frail, elderly mother in a Perspective
headlined Dancing when nothing else will do in NCRs
Dec. 11, 1998, issue. This article is followed by a health care ethicists
comments on issues raised in McCartys story.
By PATTY McCARTY
Mama made her escape on a clear,
starry night in mid-December.
She was 97 and had outlived her four siblings, my father, his nine
siblings and most of her longtime friends.
Two days after her death, the young physician who directed her
care during her last weeks called and said, She took us all off the
hook.
I wish she had been allowed to go more gently.
When I visited Mama at the nursing home the last day of her life,
I found her gasping for breath through the oxygen mask. Her chest was heaving.
Her elbows were swollen from fluid buildup. They had disconnected the tube from
the small bag of clear intravenous fluid. But the big bag of white fluid,
antibiotics and nutrients dripped relentlessly into her heart, prolonging her
struggle. I went home and called my lawyer. If you havent filed
those guardianship papers, file them, I said. They arent
going to cut us a bit of slack.
By that time I trusted the nursing home so little, I didnt
want to make the call from one of its phones.
By that time the young doctor -- with the aid of a sheriffs
office -- had contacted my reclusive younger brother in California and learned
he did not want to be involved.
Still the white bag dripped.
Mamas first stroke last June left her unable to move her
left arm and leg and made it difficult to speak and swallow.
At the nursing home in September, she fell out of her wheelchair
and broke the thigh bone in her good leg. A long operation repaired the leg,
but her mind never made it back from the operating room. She forgot how to feed
herself, stared into space and spoke little.
The week before Thanksgiving she refused to eat. When I raised a
spoonful of pureed food to her mouth, she would meet my eyes, purse her lips
and shake her head slowly, side to side.
Mama, it scares me when you dont eat, I said.
You told me once that people stop eating when theyre getting ready
to die.
She looked at me with sad, tired eyes.
The day after Thanksgiving, a second stroke sent her to the
hospital again. Now she couldnt speak at all and could move only her
eyes.
A written plan
Its getting harder to die if you dont have a written
plan -- sometimes called an advance directive or a living will. Years ago I had
read about Karen Ann Quinlan and Nancy Cruzan, young women whose parents had to
fight to unplug the machines that kept them alive, but that situation seemed
much different from anything I expected to encounter with my mother.
Mama had lived through plenty of sorrow and she didnt like
to talk about sad things. When she lived in an apartment house for older
people, she wouldnt join the ladies who prayed the rosary Friday mornings
because, she told me, It isnt good for old people to say now
and at the hour of our death 50 times in 10 minutes. She decided to
change those words to now and at the hour of our need.
When she entered the nursing home four years ago, I asked her, at
the urging of the social worker, what kind of care she would want if she were
close to death. She said, Well deal with that when the time
comes.
She was from a time when people worried about getting good health
care, not about getting too much.
Still, I knew the social workers wanted information and I tried to
help, having no appreciation of the morass I was getting us into.
When Mama was somewhat recovered from her first stroke, I said,
Youve had one stroke and you may have another. If your heart stops
would you want to be resuscitated? She said yes. I told the social
worker.
And I didnt stop there.
When the young physician came to evaluate her for surgery on her
thigh, he asked whether she had an advance directive. I suggested he talk with
her about it.
She said, I would want you to do what you could for
me. He later would recall that as, I would want you to do
everything you could for me. I would interpret her to mean, I would
want you to do what is reasonable. She was a practical woman.
When Mama had her second stroke, I recalled what a friend, a nurse
educator, had told me: You may have to make some difficult decisions.
Remember that there are some good things to say about withholding fluids when
death is near. Its natures way. The body produces a kind of natural
narcotic.
I believe that our bodies and spirits know how to take us where we
need to go. When that time came for Mama, I had thought I would talk with her
physician and the nurses at the nursing home and together we would find a way
to let her go that would be simple, natural, loving and supportive of both of
us.
What happened instead was a kind of Vietnam War against death with
lots of escalation, lots of wasted effort, lots of distraction from what really
mattered and no chance of winning.
That was then
When the young physician came to see Mama after her second stroke,
I asked if it might be time for a Do Not Resuscitate order. He agreed that
might be wise. I had no qualms about that request. She was now much more frail
than she was last summer. To pound on her chest or use electric shock to
restart a heart that yearned for rest seemed cruel.
I asked about withholding fluids. He said he thought that might be
appropriate. There are ways to keep a patient comfortable, he said. When the
body is deprived of fluids, the electrolytes go crazy and shut down the
brain and the heart, he said. Later that day when a friend from church
was with me, the physician and I again talked about withholding fluids.
What would you do if it was your mother? my friend
asked. I would have no doubt about withholding fluids, he said.
When the physicians older partner came to see Mama two days
later, I again asked about a Do Not Resuscitate order. He said that might be a
good idea. When I asked about withholding fluids, he said he it was too soon to
think of that. He held out the hope that with treatment and therapy, Mama and I
might be visiting and watching television together in six months. I felt a
swirl of happiness.
The doctor said he liked to approach these issues like an
attack dog. We should not only continue fluids, he said, but add
intravenous nutrition. That was the beginning of the intravenous
escalation.
Before Mama was released from the hospital, I signed a Do Not
Resuscitate order as did the young physician. The order said it could be
rescinded at any time. When we got to the nursing home, the admissions officer
was waiting for me. She said the nursing home would accept Mama back with the
Do Not Resuscitate order in place only if I signed three documents, gave the
nursing home my brothers address -- his phone number is unlisted -- and
agreed to apply to the court for guardianship. I was shocked but agreed to
everything. I saw few options at the time.
Almost immediately Mamas veins became a problem. And the
young doctor said he felt unprotected because he had signed the Do
Not Resuscitate order. He said he worried about what my brother might think. (I
had written my brother twice in recent months but had no response.)
During much of November, Mama had been on intravenous therapy for
a staph infection in a pressure sore on her heel. Now the veins in the backs of
her hands and in her lower arms could no longer contain the fluid. It seeped
into the surrounding tissue.
They sutured a long intravenous needle into Mamas arm above
her elbow. It, too, failed and had to be removed, leaving her upper arm red and
swollen. The young physician said he wanted to insert a central
line into a vein near the collarbone to drip intravenous fluid directly
into Mamas heart. But it seemed clear that Mamas body was telling
us she didnt want the fluid. I said no.
Since my days in a Catholic grade school, I have known it is not
necessary, in the churchs view, to pursue extraordinary
measures to preserve life. Just to be sure, I called a priest who was a
family friend.
Youve gone way past ordinary measures, He said.
When your mother refused to eat, that wasnt because she didnt
want the food. Her body couldnt use it.
He added that it wasnt good to pursue extraordinary measures
when there was little chance of a good outcome.
Still, it seemed scary to think of Mama without fluid to sustain
her. I called my cousin and asked her to go with me to the nursing home. We
found Mama resting comfortably, not hooked to anything. I asked her if she knew
who I was. The skin around her eyes crinkled and she blinked. It was as if she
was saying, Of course I know you. Youre my kid. It was our
last exchange.
There were more attempts to get the veins in Mamas hands and
lower arms to accept the fluid. By this time, Mama had pneumonia, and the staph
infection was in her blood. On Friday the young physician called me at work to
say he wanted to insert a central line into Mamas heart.
Since this procedure involves the risk of puncturing the lung, it
is usually done in a hospital. Mama had been moved from bed to ambulance gurney
and back again six times since September. No matter how carefully the ambulance
technicians made the transfer, she always cried out. Because it is a surgical
procedure, I thought the insertion of a central line would require my
permission. This seemed to be my chance to stop this nonsense.
As clearly as I could and with not a little anger I said, I
want you to stop jostling and cutting on and hurting that old woman.
The physician called an hour later to report cheerfully,
They got the line in. He had arranged for someone to come from the
hospital to do it. I was flabbergasted. How could they do that without my
permission?
You have no standing, he said, which meant, I suppose,
that since I did not have a paper giving me the right to make health care
decisions for Mama, he had concluded I had no legal right to do so.
Baffling decisions
Im not the only one baffled by these medical decisions. A
friend who is a nurse at another facility said, Why wouldnt you
assume legal guardianship since your mother was no longer competent and you are
next of kin?
Another friend who is a nurse said, These things take on a
life of their own. Once they get started, people look at each other and wonder,
Why are we doing this?
A doctor peripherally connected with my mothers care told
me, People make health care decisions for their loved ones every day
without legal documents.
The nurses who cared for her over the years knew something
wasnt right. One of them asked, Whats going on back
there?
I said, Its not my idea.
If the no standing moment was a bad scene, it was
followed that afternoon by one that raised the ante. The young physician
arranged for a meeting to be attended by the nursing homes director and
its lawyer, the director of nursing and a social worker.
I attended with my daughter, Jeanne, who is a lawyer. I think the
purpose of the meeting was to show us who held the cards.
It seemed as if they had taken over, had erected a Plexiglas
shield between Mama and those who loved her. I asked the physician what he had
planned. He said he would keep Mama hydrated and treat any
infections that come up. Jeanne expressed concern for her
grandmothers pain. Mama had winced when Jeanne touched her swollen upper
arm. The doctor named an over-the-counter pain reliever, and Jeanne said it
never helped her. He said they would use morphine.
The nursing home lawyer said the reason for all this was that they
take death seriously in a Catholic facility. I almost choked. She urged me to
continue to seek guardianship. She said if the physician and the nursing home
didnt do something, Mama would die.
The social worker said that Mamas wishes had been
documented too many times. If they had additional information about
Mamas wishes, they didnt share it with me.
It seemed crazy that all this was happening because more than
three months ago an elderly woman facing surgery had asked a young doctor to
do what you could for me. She hadnt said poke me and prick
me, suture me and cut on me and pour fluid into me until I breath my last.
Over and over I prayed a prayer I had learned in grade school when
we sang the Lamentations of Jeremiah in Holy Week: The Lord has delivered
me into a hand out of which I cannot rise. See, O Lord, and consider for I have
become wretched.
When I visited Mama that Friday afternoon I said, Im
sorry, darling. You protected me when I was little, but I cant protect
you now.
The nurses and nursing assistants continued to treat Mama
lovingly. Although she rarely opened her eyes, they always spoke to her by
name, told her their names and what they were going to do before they touched
or moved her. One of them said, All the nurses are praying she will go
peacefully.
The sister in charge of pastoral care told me she went to see Mama
the Sunday before she died and said, Florence, its time to let go.
This is going on too long. Patty will be fine.
And still the fluids dripped.
When the phone rang just after 2 a.m. Tuesday, I knew what the
nurse would say. I said we come right away. I called Jeanne, and we went to the
nursing home to wash Mamas body and rub it with fragrant oil.
Above Mamas left breast a little spray of tubes dangled,
about 2 inches long.
Shall we take that out? I asked the nurse who came to
help.
The undertaker will do that, she said.
After so many nights in hospital gowns, Mamas body set off
on its last journey wearing a favorite flannel pajama with a little corsage of
plastic tubing rooted in her heart -- a souvenir of a battle that -- for her --
no longer mattered.
Patty McCarty is NCR s copyeditor.
National Catholic Reporter, April 2,
1999
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