The Right to Choose

by Carlos

I was quite young when I learned that suicide is illegal, and it struck me as rather odd. How would we punish the offender? Imprison the corpse?

Now the topic is as hot as ever. The recent Terry Schiavo decision has brought it back into the headlines, but it was never far away. Dr. Kevorkian, those crazy people in Oregon, the "Right to Life" movement, all helped to keep the issue of choosing death very much alive.

But what really won't let this issue go away is the odd situation in which modern society finds itself. Medical technology has far outstripped our collective sense of ethics. We can do a lot more today than we are certain we actually should do.

I believe the assisted suicide movement is in part a reaction to the coldness of the medical profession, and of society itself. For their own protection health care workers usually don't allow themselves to see their patients as suffering, grieving human beings, but as things to be fixed. It's much easier to repair a broken engine than to worry about how it feels.

But what is the solution? The "Right to Life" movement believes the solution lies in imposing a dogma about the sacredness of human life. All life is sacred and must not be tampered with. What this movement fails to consider is how we tamper with human life by artificially interrupting and prolonging the natural process of dying.

I work in a hospice. In hospice we are committed to supporting the natural process of dying. Patients come to us when all other options have been exhausted, when it's time to let go of curative interventions that have ceased to work and to accept the inevitable course of life. Hospice neither practices nor takes a stand on assisted suicide. We don't use unnatural means to prolong life, so there is never any question of removing them. On a few occasions patients have asked me if we could make their death happen sooner. I explain to them as compassionately as I can that we can't grant such requests, but we can make sure their pain and suffering are kept at a minimum. Some nurses have told me that they refer such patients to the Hemlock Society.

There are some good arguments against assisted suicide. Do we really want to train doctors to kill? Wouldn't this be abused, as an excuse to eliminate people whose care has become too burdensome?

As for training doctors to kill, we don't have qualms about training veterinarians to kill animals, and animal lovers do not appear to object. Why not? Because we think it compassionate to end the intractable suffering of a fatally wounded or sick animal - yet what seems compassionate for animals fills us with horror when applied to human beings.

As for abusing the system, the same dangers exist with organ transplants. Yet that has not stopped us from establishing safeguards to make sure families of potential organ donors are not subjected to undue pressure and that the lives of their loved ones are not terminated prematurely.

One Man's Plea

One of the references Jay cited tells the story of Marcel Tremblay, a 78-year-old retired businessman suffering from a chronic and painful lung disease:

“It’s supposed to kill me, but it’s taking too damn long … I can’t think of a worse death than not being able to breathe,” he told The Whig-Standard this week, in an interview at his home.

“I have trouble getting air into my lungs and they say it will get worse and worse until I can’t breathe at all. I have nothing to look forward to except a lousy death.”

Who can claim the authority to tell this man he is obligated to suffer such a death, when the means exist to prevent it and he is still capable of making an informed, rational choice?

Assessing the Anti-Choice Position

Let's give the opposition a chance to speak. The same article reports the arguments of Margaret Somerville, a law professor and ethics expert at McGill University in Montreal and strong opponent of assisted suicide. Permit me to dialogue with Professor Somerville:

“I don’t think debate is bad – I just hope they don’t make the mistake of thinking this is the solution because I really it is not,” she said.

“I think it’s a disaster.”

The real problem with some of these cases, she said, is a lack of access to pain management and palliative care.

I hear this argument often: this whole issue would go away if only people knew about the wonders of modern pain management and palliative care. Or maybe not. My hospice unit is situated in a modern urban medical center. We offer the best pain management available anywhere. We can do a lot, but we still can't control everybody's pain, certainly not completely. In giving pain medication you are always treading a fine line between comfort and consciousness. You can't always have both. If the only way to control some people's pain is to put them out completely, how do we justify doing that, while at the same time denying people their own choice to put an end to conscious life?

Often we speak as if physical pain were the only issue. It isn't. Aside from pain there is frequently nausea, vomiting, dizziness, generalized discomfort, shortness of breath, and the side effects of strong pain meds like morphine, such as grogginess and severe constipation. On top of all this come feelings of helplessness, worthlessness, and humiliation from completely losing control over one's surroundings and even one's bodily functions. I've seen patients throwing up repeatedly with no relief. Our ability to manage these symptoms is limited. How do we justify forcing patients to endure such torture once quality of life has begun approaching zero? Whether or not those against assisted suicide believe they can justify it, to keep the discussion honest we need to stop acting as if "palliative care" were the magic solution that will make this problem disappear.

Somerville said legalizing assisted suicide would have drastic implications for the medical profession. If physician-assisted suicide were legalized, medical students would have to be taught how to do it, she said.

“Doctors should not be our official legalized killers,” she said. “If I was going to allow it, the one group I would not let do it would be doctors.”

How is it a praiseworthy act of compassion for a veterinarian to put a suffering animal to sleep, but beneath the dignity of doctors to offer the same kind service to a human being? If assisted suicide is "legalized killing," why don't we charge veterinarians with animal abuse? This is not a question of objective medical standards but of what our values are, and what we believe constitutes true compassion.

Somerville describes those people who want the right to die as “victims” who are influenced by organizations that are lobbying the government for change.

“One way for people who don’t feel they’ve got very much of a legacy, certainly not a public legacy, is to do exactly what this man is doing to say, ‘my death will make a difference – it will legalize a cause that I want to promote and that the other right to die people want to promote,’” she said.

“So in a sense, your ordinary death, which is unbearable, becomes a heroic death. Suddenly, you’re a martyr in the cause of promoting something bigger than yourself.”

This statement is simply ridiculous. I have never seen anyone ask to die early because of a martyr complex or a wish to create a legacy. People don't choose to end their lives simply to make a point. Those who make such requests do so because they are in pain and afraid. I wonder if anyone capable of making such a statement has actually seen someone dying from an intractable terminal illness. The ivory tower of academe is the last place I would look for guidance on such real-life issues.

The True Case for Living

Having said all that, there is still a case to be made for not choosing to end one's life, but the anti-choice crowd is not making it. Let me make it now, as one who has spent years working with dying people.

My mission as a hospice music therapist is to give hope to people who have given up hope. So often families think their relationship with their dying loved one is over, because that person can no longer respond in the accustomed ways. Family members may just sit passively in the room, reading the paper, not knowing what else to do. On many occasions I've been able to show these families that they can still have intimate contact with their loved ones. Even "nonresponsive" patients still respond, not in our language but in a language of their own. This language consists of eye movements, hand gestures, breathing changes, wordless sounds, other subtle changes we may just barely detect but know that we sense. Part of my job is teaching family members to let go of the language they know and adapt to the new language of their loved one who can no longer speak the old.

There is an advantage, a tough one indeed, to going through a long progressive terminal illness. One has a chance to complete what is still unfinished, to confront old fears and guilts and finally overcome them. Often this process is internal. I once spent hours at the bedside of a woman who could not speak. Although we exchanged no words, I could get a sense of how she was feeling by the look on her face, the sounds she made, and the way she held my hand. Over several weeks I could sense her feelings shifting from anxiety, through anger, then finally peace. When the time of her death arrived, she was ready. Had she chosen assisted suicide, she would not have reached that point.

It has been that way with many of my patients, even the most agitated. If we work with them and support them long enough, often we see them finally making their way to peace. I've been able to form a sense of the psychological stages of terminal cancer. There is first the shock and disorientation upon receiving the diagnosis. As time wears away the protection of denial, the anxiety becomes most acute. Then may follow months or even years of seeking a cure, debilitating treatments of chemotherapy and radiation that often do more harm than good. When these fail, one must deal with a new sense of hopelessness. This is often the point of my patients' journey where I join them, since at this stage many of them enter hospice.

In hospice many must deal with their anxiety. They are now in an environment where it's permissible to talk about death, if they want to. In hospice we do not project the fear of death, we accept death as a natural process. We can even joke about it. One man expressed his fear to me by taking my hand and saying, "Do you realize you are shaking the hand of a man who's going to die?" I shook his hand and said, "Do you realize that you are too?" He smiled. The man had a very troubled past, had been irritable and often abusive to his companion, but he was working through his fear, and made it to a peaceful death.

This is how it goes in hospice when things work right. I have seen the most frightened people learn over time to stop clinging to false hope and to their fading lives, eventually finding a peace so deep that it moves and inspires those who are present and sensitive to it. The mind's defenses give way when the body no longer has the energy to sustain them, and with proper care and support what often emerges is an aura of tranquility that can fill one with awe. The terminal coma that is often cancer's last stage can become a blessed place of rest, where all is finally resolved, there are no more worries, and one waits with acceptance and patience for whatever may follow.

The Coma Patient

I have worked with many patients in comas, and have found surprising signs of life in quite a few of them. One woman's chart said her state was "vegetative" and that she was capable of "no purposeful response." Yet as I played my flute for her, she reached her hand out towards me and caressed my face.

Another patient was a 19-year-old woman in an irreversible diabetic coma. The consulting physician was the well-known neurologist Dr. Oliver Sacks. I read in his chart notes how it was a pity this young lady was no longer capable of any meaningful response. But what I found while working with her made me wonder. She would consistently track my movements with her eyes. Such movements are often dismissed as just a reflex, but other things were not as easy to explain. Often at the end of a session she would seem relaxed, her eyes completely closed, but when I got up to leave she would open her eyes wide, start groaning, and go into a coughing fit. This happened too many times to ascribe to coincidence. I felt she was telling me she didn't want to be left alone. I would usually spend a few extra moments with her until she became calm once again. During one week, over three sessions, something remarkable happened. I would ask her if she liked the music, if it was good for her, and she would respond with a low, steady groan: "unnnnhhhh." This did not continue, but for that one week the sounds she could still make sounded purposeful.

The end of my work with this patient was anticlimactic. The nurses started leaving her in the hallway, where they could keep an eye on her. I could no longer work with her inside the ward, where it was nice and quiet. The hallway teemed with the noise of nurses' voices and patients' wheelchairs coasting by. I felt her recede into a deep, protective shell. Whatever responses I got from her before, whether they were reflexes or meaningful communication (and I don't believe anyone knows exactly where the line is), vanished. She had now become the stereotypic vegetable most people thought she was. This new vacuousness only made her previous responses seem more real.

What are the implications of all this for assisted suicide, or for today's infamous cases like Terry Schiavo? I've seen the other side too. One patient of mine who lived in a nursing home suffered a sudden and very unexpected stroke. She was taken to the hospital and put on life support. She had no family, only a court-appointed guardian, and I was her only visitor. I found no meaningful response - which is my usual experience with patients who are hooked up to machines. The doctors suggested discontinuing the artificial support, but only the guardian, as the health care proxy, could make the decision. The guardian asked me what I would do, and I told her: this woman is ready to die, it is cruel to prolong her death. Still, the guardian could not bring herself to make the decision. Mercifully, the woman died a few days later anyway.

I've seen snippets of the Terry Schiavo tape. It is heartbreaking watching her family trying to convince themselves that what they desperately want to see is really there, and trying their hardest to force it out of her.

So what makes the difference? In my experience, a lot depends on whether the coma is a natural phase of the illness or is prolonged artificially. I can usually get some kind of response from the former, but from the latter, virtually never.

Preserving Life vs. Prolonging Death

There is a difference between preserving life and prolonging death. Past a certain point we are not respecting life, we are interfering with nature. We cannot treat life as sacred if we refuse to accept the fact of death, and that death too is sacred. Treating life as sacred means accepting and respecting all of life, including its natural and inevitable end. It means allowing the body to rest when it has gotten old and tired and has completed serving its purpose. Withholding the chance for this rest, even in the name of the right to life, is an intrusion and an abuse. Forced sleeplessness is a common method of torture. So is trying to prevent the moment of death, once the body has worn itself out.

We need to bring our discussion of assisted suicide to a close. While it is wrong to prolong life artificially past a certain point, given all that we have observed, is it also wrong to choose to end it before that point? It is possible that choosing assisted suicide may deprive one of the experience of complete resolution, of working one's way through the grief and the pain to find one's peace at the other end. For that reason, I probably would not choose it myself. But it is not up to me to demand that anyone else suffer this horror. I see that as similar to and no better than trying to impose my religion on somebody else.

Everyone's journey is individual, and no one knows how that journey will end or is supposed to end. And not everyone has compassionate and understanding companions nearby to help shepherd them toward their final peace, nor do all who suffer prolonged terminal illnesses die in peace. I have seen quite a few whose fear never left them in spite of all our ministrations. Fortunately, in my experience at least, the peaceful ones far outnumber them. But it is not our call to make. We can educate people as to how their spiritual journey might progress should they choose not to end it, but the final choice must be theirs. Only each individual truly knows his or her own pain. No one else has the right to define it for them.

The assisted suicide movement is a response to the callous way we treat sickness, pain, and death in our culture. We need to hear its message.

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