I used to dread my father’s annual letter in which he informed me of his desires in case he should become terminally ill and unable to make his own healthcare 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 for 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 almost every day for 20 years.
Originally he did up a power of attorney for my mother to make healthcare decisions for him in the event he was unable to do so himself. Then a horror story occurred to an acquaintance. This man had a brain hemorrhage. When he was in the hospital, the doctors pressured his wife, who had power of attorney, to allow surgery to save him. She consented, even though she knew he would not want it. The surgery was largely successful; the man survived, but he was left without short‐term memory. The wife, on the other hand, knowing she had gone against her husband’s wishes, went home and committed suicide.
My father decided to give my mother power of attorney over his financial affairs in case of his disability, but that it was too much to ask of her to have responsibility for his healthcare. For that he named a close friend, a colleague about 20 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 was to him.
It also worried my father that my mother did not seem to understand what he was so anxious about. She just did not share his 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 often lamented that physician‐assisted suicide was not an option for him in Wisconsin, where he lived.
As time went on, my father grew increasingly depressed. He saw my mother becoming more and more confused, forgetful, and stooped. He perceived himself as irrelevant to the professional life that had been so important to him.
In September 1996, he took a trip to Switzerland with my brother and a friend. They hiked in the mountains. My brother and the friend remarked that they thought my father, at age 81, was hiking too fast for his own health and might have a heart attack. He responded that that was what he hoped for, to die of a heart attack in the mountains of Switzerland, which he loved so much. But his heart was too strong. He did not die there.
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 visit him, but my father did not want to have us. He wanted to spend Thanksgiving with his friend who was to serve as power of attorney for healthcare, and wanted to see us at Christmas.
Since I worked for a Dutch company and had friends in the Netherlands, I thought of offering to get him help to travel there, where physician‐assisted suicide is legal—but I couldn’t bring myself to mention it. And significantly, 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.
As the illness progressed, 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. I was glad I had not changed my name, because my retaining my maiden name meant that the airlines did not question my using his 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, had we managed to get him on Zoloft earlier, he might never have gotten cancer.
By Christmastime, 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. Surely he must have thought about taking the pills and the liquor together, but no words were ever exchanged on that topic. Curiously, after his terminal cancer diagnosis, he told me that he could not enjoy drinking alcohol anymore; so—despite his 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 the doctor had told him 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, an eminent University of Wisconsin professor, could have figured out that the codeine and alcohol together would be a fatal combination without the doctor telling him.
A week or two later, when the codeine wasn’t working any more, the doctor prescribed morphine pills as well. Now 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. But he never touched the liquor, and 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 its side effects and 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? He wasn’t 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 with the power of attorney visited my father every single day. He was amazing. Sometimes, as my father got worse, he even did the bedpans. A second friend also visited my father 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. When the friend wasn’t there, my father kept turning the drip down to the lowest setting.
My father had discovered that his mental clarity was more important to him than pain relief. When he was on the morphine, he felt confused, and sometimes hallucinated. The hallucinations, he told me, were not pleasant. You hear that morphine is addictive, but my father really hated it. I have heard that other older patients hate it as well. I later read in an article in the New York Times 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 that the friend assumed my father was not in his right mind now, and he 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 University of Wisconsin’s medical school and had familiarized himself with these issues over the years. Surely he knew this property of morphine, but even so, he kept turning the drip down to the lowest setting. 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, nose, and throat doctor around this time. He was vehemently opposed to physician‐assisted suicide. This doctor was convinced that, if it 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 my father had had with morphine, but he would hear none 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. But he would not touch it, fearing it 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 my father was keeping himself alive looking forward to these 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.
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 in his duties as power of attorney for healthcare, 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 a Caesarian for failure to progress. But, with my second child, I had precipitous labor and gave birth in a parking lot. I had worried about the wrong thing. I pointed out that we often do that when we look toward the future. 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.
My experience around my father’s death has led me to several 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 or she 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. 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 doctor concerning being pressured by insurance companies to terminate expensive patients are certainly valid. Suicide 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.