||Its getting harder to
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.
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