My Father and the Right to Die

By Anne Barschall

A version of this essay was published in the July 2004 issue of “Friends Journal”

I used to dread my father’s annual letter in which he informed me of his desires in the case he should become terminally ill and unable to make his own health care decisions. He had been told that failing to adequately inform one’s family about one’s desires in this type of situation would likely result in one getting unpleasant and very expensive extraordinary medical procedures to prolong one’s life.

My father had a horrible fear of being hooked to tubes, of being hospitalized, of being subjected to medical tests and surgery, of being in pain without adequate pain relief, and mostly of being debilitated. He belonged to an organization that promoted physician-assisted suicide. He also belonged to an organization that promoted the use of heroin for pain relief terminal cancer patients, because heroin is supposedly better than morphine for this purpose. He agonized over these issues constantly.

It would be difficult for someone not knowing my father to imagine how often he talked about these topics to everyone around him. He must have thought about it every day, or almost every day for 20 years.

Originally he did up a power of attorney for my mother to make health care decisions for him in the event he was unable to do so himself. Then a horror story occurred to someone in his acquaintance. The man had a brain hemorrhage. When this man was in the hospital, the doctors pressured his wife, who had power of attorney, to allow them to do surgery to save him. She consented, even though she knew he would not want such surgery. The surgery was largely successful, though it left the man without short term memory, so the man survived. The wife, on the other hand, knowing she had gone against her husband’s wishes, went home and committed suicide. She did not survive.

My father decided that, while he could allow my mother to have power of attorney over his financial affairs in case of his disability, it was too much to ask her to have responsibility for his health care. He re-did his power of attorney to name a close friend, who was a colleague, about twenty years younger. He spent a lot of time with that friend, emphasizing and reemphasizing what he did not want done on his behalf, in the event of a serious illness — and how important pain relief would be for him.

It also worried my father that my mother did not seem to understand what he was so anxious about. She just did not have his same fear of having tubes connected or of being debilitated. He found her lack of concern exasperating.

My father emphasized to all of us that he did not want to be resuscitated. He would not even go with my mother to take an infant CPR course, when I had babies, because he was afraid that the knowledge might somehow be used to resuscitate him. He also often lamented that physician-assisted suicide was not an option for him in Wisconsin. He told his doctor this, too.

As time went on, my father grew increasingly depressed. He saw my mother becoming more and more confused and forgetful and stooped. He perceived himself is becoming increasingly irrelevant to the professional life that had been so important to him.

In September of 1996, he took a trip to Switzerland with my brother and my brother’s girlfriend. They hiked in the mountains. My brother and his girlfriend remarked that they thought my father, at age 81, was hiking too fast for his own health. They feared he would have a heart attack. He responded that that was what he hoped for, to die of a heart attack in the mountains of Switzerland, that he loved so much.

But his heart was too strong. He did not die in Switzerland.

The diagnosis of terminal cancer came two months later back at home in Wisconsin. It was a painful time. For at least a month and a half after the diagnosis, my father had no serious symptoms – only dread. My husband and I wanted to go visit him, but he did not want to have us. He wanted to spend thanksgiving with his friend, the one who was listed as the power of attorney for health care. He wanted to see us at Christmas.

I worked for Dutch company. I had friends in the Netherlands. I thought of offering to try to get him help to travel to the Netherlands, where physician-assisted suicide is legal… BUT I couldn’t bring myself to mention it. And he never asked. As conscious as he was of this issue, surely he must have known that my Dutch connections might be an option for him, but the topic never came up. Maybe it wouldn’t have worked out, but we never even looked into it, despite there being a month and half when he felt well enough to travel .

My brother and I took turns visiting my father on weekends. My father had accumulated 200,000 frequent flyer miles that we could use to visit him. It was the first time I was very grateful that I had not changed my name, because my retaining my maiden name meant that the airlines did not question my using his frequent flyer miles.

The cancer diagnosis plunged my father into a terrible mental state. The doctor put him on Zoloft, which effected a truly remarkable transformation in his personality. Suddenly, he seemed to take so much more pleasure in the people around him. He expressed intense gratitude when neighbors and friends brought him and my mother prepared dinners. I wondered whether, if we had managed to get him on Zoloft earlier, he might not ever have gotten cancer.

By Christmas time, he was in terrible pain. The doctor had given him a prescription for codeine pills. He took the first one the day after Christmas. I looked at what seemed like an unusually large amount of codeine, and thought of my father’s well-stocked liquor cabinet. He had several bottles of hard liquor in there at all times. I wondered about physician-assisted suicide. I never suggested anything to him about taking the pills and the liquor together. Surely he must have thought about it, but no one ever said anything.

Curiously, after his terminal cancer diagnosis, he told me that he could not enjoy drinking alcohol anymore; so — despite his having always having had at least one or two drinks every day of his adult life — after the cancer diagnosis, the bottles were untouched.

Later, my brother told me that the doctor had told my brother that 50 codeine tablets would be a fatal dose. Since my father had been so vocal about his support and aspiration for physician-assisted suicide, I had to assume that this piece of information was the closest the doctor dared come to carrying out what he understood my father’s wishes to be. My brother did not repeat the information to my father. Like me, I suppose he couldn’t bring himself to. But surely my father, who was an eminent professor at the University of Wisconsin, could have figured out at least that the codeine and alcohol together would be a fatal combination, without the doctor telling him.

A week or two later, the codeine wasn’t working any more. The doctor prescribed morphine pills as well. So, my father was sitting with large bottles of both codeine and morphine pills in his bathroom and a cabinet full of hard liquor in his kitchen. He never touched the liquor. He never took more than the prescribed dose of painkillers.

He did, however, decide to stop the interferon that his doctor recommended he try. My father didn’t like the side effects of the interferon. He also did not want any measures taken to prolong his life.

The morphine turned out to be a mixed blessing. The constipation it caused was horrible, worse than the pain from the cancer. Most people, when I mention this, immediately wonder why laxatives had not been prescribed along with the morphine. Constipation is a known side effect of morphine. We had to ask the doctor for laxatives. Why? Was he stupid? I can only imagine that the doctor did not think my father would still be alive after taking the morphine. The doctor must have thought, after all my father’s talk, that my father would take the morphine and the codeine and the liquor and be gone.

My father’s friend, the one with the power of attorney, turned out to be amazing. He visited the father every single day. Sometimes, as my father got worse, the friend even did the bedpans. My father had a second friend who visited him every single day. I was in awe. I had no idea my father had such loyal friends.

As the pain got worse, they put my father on a morphine drip. Then we started observing something really curious. My father’s friend, remembering my father’s fear of pain, kept turning the drip up to its maximum setting. My father kept turning it down to the lowest setting.

My father had learned something. He learned that when he was on the morphine he felt confused, and sometimes hallucinated. The hallucinations, he told me, were not pleasant. He discovered that his mental clarity was more important to him than pain relief. You hear that morphine is addictive, but my father I really hated it. I have heard that other older patients hate it as well. I later read an article in the New York Times that said that morphine-induced hallucinations in older, dehydrated patients are not uncommon.

The friend who was responsible for making decisions had a hard time accepting this situation. My father had spent so much effort explaining his desire for as much pain relief as possible. He assumed that my father was not in his right mind and kept turning up the morphine.

One of my colleagues explained to me that higher doses of morphine accelerate the damage of cancer and hasten death. My father had taught at the University of Wisconsin medical school, and had familiarized himself with these issues over the years. Surely he knew this property of morphine, but he kept turning the drip down to the lowest setting even so. Ultimately, his struggle to remain lucid was a struggle against death, a struggle to remain alive, despite his having said so many times that he wanted to die immediately if he got a terminal diagnosis.

I had a conversation with my son’s ear doctor around this time. This ENT was vehemently opposed to physician-assisted suicide. He was convinced that, if physician-assisted suicide were legal, he would be pressured by HMOs to terminate expensive patients. He was also convinced that physician assisted-suicide was unnecessary, because morphine was such a good pain reliever. I tried to tell him about the negative experiences by father had had with morphine. The ENT was hearing nothing of this. He was as much a true believer against physician-assisted suicide as my father had been a true believer for it.

When my father could no longer eat, I suggested to him that he might want to drink Pedialyte. I thought that being well hydrated would improve his mental clarity, and he was complaining so much about being confused. He would not touch the Pedialyte. He feared that the Pedialyte might prolong his life. In that respect, he was consistent with his earlier stated desire not to prolong his life unnecessarily.

As I mentioned, my brother and I were taking turns using up my father’s frequent flyer miles to come visit him. He looked forward to these visits a great deal. My father’s friend, my brother, and I all concluded that he was keeping himself alive looking toward visits. A distant cousin flew in from Washington state to visit him. He really perked up for that. He lived at least a month longer than had been predicted. His strong heart kept beating. He lived for two weeks after he stopped being able to drink anything. He only died just before we decided that my husband should make a visit. Perhaps he had waited long enough. Or perhaps, he wasn’t as excited about that visit? Who knows?

As part of this process, my father started holding people’s hands. This was very unusual for him. He had never liked being touched. He had not held my mother’s hand for 40 years. She was thrilled at the change.

My father’s friend was disturbed. He thought my father was regressing. My father had always been this austere, distant person – a workaholic, typical of immigrants. How could he be reaching out to hold everyone’s hands? I could see the friend thinking that somehow he was failing, because my father had lived to this humiliating impasse. Turning up the morphine was a way of not seeing what seemed like embarrassing scenes.

I, on the other hand, was amazed. My father, on his deathbed, had learned that holding hands was better pain relief than morphine. What a revelation! That my father could learn such a thing, even as he died, gave my father’s death meaning for me.

I wrote an e-mail to my father’s friend. I explained how my greatest fear about childbirth had been that I would be given an necessary Caesarian for failure to progress. In fact, with my second child, I had precipitous labor and gave birth in a parking lot. I pointed out that we often worry about the wrong thing, when we worry about the future. I had worried about failure to progress, when in fact I was due for precipitous labor. My father had worried about insufficient pain relief when in fact he valued mental clarity more. He had worried about not dying quickly enough, when in fact he was eager to remain alive. In reality, his greatest concern was holding on to the people around him.

I was grateful that my father was able to die at home, with the aid of hospice and visiting nurses. He had always been afraid of hospitals. He managed to live his entire life, 81 years, without ever spending a night in the hospital. He was born at home and he died at home. It was a glorious life, full of adversity, adventure, accomplishment, and prosperity.

Conclusions

People given power of attorney should not — as my father’s friend did — assume that their charge’s wishes are necessarily what was expressed before the onset of illness. They need to listen and make sure that the dying person still has the same opinion when dying as he had when well.

I still think that assisted suicide should be an option for people. That option would have spared my father some of his 20 years of anxiety. I would like to be spared such anxiety myself. My father might not actually have chosen to go ahead with an assisted suicide, if he had had the choice. After all, he did not take his life when the means were readily available to him and he was able to use them. But it would have been nice for him to have the option. I might not really exercise such an option, given the choice, but I would like to have it, nevertheless.

On the other hand, the apprehensions expressed by my son’s ENT concerning being pressured by insurance companies to terminate expensive patients are certainly valid. Having suicide be assisted by physicians would be a poor option. This function should be carried out by separately licensed professionals with mixed backgrounds in medicine and counseling.

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