01-07-2013 - Traces, n. 7

new world

Illusory Control
“The right to die is one of the oddest rights to claim” since “we will all die.” Daniel Sulmasy,  30-year veteran doctor for the terminally ill, discusses euthanasia and assisted suicide, highlighting that behind this “bad medicine” lies the corrosive attempt to divert man from his finitude, which no law can short-circuit. He explains how, in front of death, we are taught what it means to be human, even to the point of revering “the Mystery made manifest.”

by Maura Kate Costello

While the debate surrounding euthanasia (death caused by another person) and assisted-suicide (death caused by self with means provided by another) began to claim a space on the American stage in the 1970s, the events of the 1990s fanned the flames. Dr. Kevorkian’s controversial Mercitron, or “death machine,” and Oregon’s Death with Dignity Act that legalized physician-assisted suicide (PAS) in that state, established the movement for euthanasia and PAS. More and more states have been legalizing PAS: Oregon (1994), Washington (2008), Montana (2008), and Vermont (2013), while the pro-vote lost in Massachusetts in 2012 by less than 60,000 votes.
  Dr. Daniel Sulmasy, former governmental advisor on bioethics and Kilbride-Clinton Professor of Medicine and Ethics at the University of Chicago and Associate Director of the McClean Center for Clinical Medical Ethics, offered Traces some insights into this demanding cultural force in American medicine and society.

What is the significance of discussing euthanasia in terms of having the “right” to die, or to choose to die?
The right to die is one of the oddest rights to claim because it’s sort of like claiming a right for the sun to rise: we don’t have a choice about it–we will all die. This discussion initially began as a movement for the right to be allowed to die when the patient’s life was unnecessarily prolonged by burdensome life support. Then, people began asking for the right to be killed, or to kill themselves. I think fundamentally that this is bad medicine, bad morals, and bad public policy. The fact is that this undermines the moral basis for medicine in the first place. I’ll draw a distinction between attributed value and intrinsic value. Intrinsic value is the value a person has by virtue of being a human being, and this is the basis of all morality and certainly of medicine. We help people when they’re sick because we first recognize their intrinsic value–their dignity. Attributed value, on the other hand, is the value we or others attribute, and this varies from person to person. It is based on culture and how productive a person is–for example, an adult in diapers is considered, in the attributed way, undignified. The question, though, is: Is the assault an illness makes on the attributed value of a person ever ultimately successful in eradicating all of their dignity? I think the answer has to be no. If a patient is comatose and we say they’ve lost rationality and, therefore, the basis of dignity and hence value, this is wrong. When we say it is okay for doctors to kill a patient, even with their consent, we say there are people about whom we can ratify the judgment that they have no value. And if that’s the case, the moral basis of medicine is radically undermined, as that of all morality.

What contradictions are most evident in this movement? And what grounds does the State have to legitimize its claims?
In the movement for euthanasia and PAS, many people will say the problem is that we have too much technology, so people stay alive for too long. The answer these same people give to this problem is ironic: the drug or machine that will kill them is just as technological as the drugs and machines that can prolong their life. Secondly, the fact that human beings are mortal is one of the fundamental mysteries we face, especially in medicine. The fact that we can become ill or injured is something we all have to come to terms with. There is no way to be biologically immortal. In confrontation with that profound metaphysical reality, some people have a knee-jerk, anemic reaction: Since I can’t overcome my mortality, I will seize control by killing myself. But it is an illusory sense of control and freedom because it is ultimately the death of the individual. What role does the State have in that? Absolutely none! The State should not make decisions about the mystery of human finitude. The State’s role is to create a space in which human beings are free to confront the mystery of their mortality, not to create a legislative mechanism whereby that process is short-circuited.

How did this desire for control take hold, in your opinion?

There has been a loss of religious sensibility and religious sense within the American community, as part of the industrialized, well-educated world. The questions of euthanasia and PAS are not big questions in the developing world, where individuals are struggling to live and eat, as in Africa or Bangladesh. These questions are for the well-educated who have the illusion of being in control because we have been able to control so much in the world around us. But this sense of control is not real. No matter how good genetic engineering gets, you will never be able to choose your parents. You have no control over being born and you are not able to not die. You can’t make someone love you–it must be a free act, or it is not love. This philosophy of control, a very diminished philosophical system that seems to be a leading force for this issue, cannot account for the fundamentals: birth, death, and love.

What does the situation in other countries, especially north Europe, reveal to us?
The European experience ought to give us pause because it shows true evidence of the slippery slope. People say here, “Look at the data in Oregon–there aren’t huge numbers rushing to get euthanized…” But it has been legalized only for a short time, and very controversially. To see the real impact, we should look to the Netherlands. There, 2–3% of the population dies by assisted suicide and more than 20% of patients with cancer die by this procedure. In the Netherlands, euthanasia began by being illegal but not prosecuted. Then it became legal, but only for those able to speak for themselves and freely choose. Now, in practice, people who are demented are euthanized because the families use “substituted judgment,” saying, “Mom wouldn’t want to go this way.” In fact, 32% of the deaths by assisted suicide are non-voluntary. So, it has gone from voluntary to non-voluntary and, in addition, it has gone from elderly now to children. The New England Journal of Medicine baptizes this practice with widespread publicity of the Groningen Protocol, where physicians will regularly euthanize children with congenital anomalies, presuming that the person with the illness would rather be dead, and that it is more merciful to kill him. In addition, assisted suicide has gone beyond even just the terminally ill, as the law stipulates. People who are depressed with unsuccessful therapy are being euthanized. They say their depression is terminal because they would kill themselves if the doctor doesn’t provide the lethal injection. So, we say in the U.S. that we have safeguards, that “it can’t happen here,” but there is clear evidence in the European experience that it will happen.

What long-term effects on our cultural mentality might euthanasia have, should it be legalized?
The effect is quite erosive. Now, the default in society and in medical practice is to recognize the right of human beings to stay alive, the duty to keep ourselves alive, and the duty we all have to protect human beings, especially the most vulnerable. Once euthanasia is legalized, the default will flip and the question to the vulnerable person will become: Why haven’t you killed yourself yet? Furthermore, if we can’t say that suicide is the elementary act of wrongdoing, then there’s no such thing as morality at all. A German philosopher, Wittgenstein, once said, “If suicide is allowed, anything is allowed.” He used this to raise the question, very provocatively: Is there any morality at all? If we believe that there is such a thing as morality, then I think that suicide is the elementary act of wrongdoing. If we can’t say that, then there’s no such thing as morality at all.

What can suffering and dying naturally teach us about life?
There are innumerable patients who have taught me immensely more about what it means to be a human being by their example than I can recount. For some of these patients, I feel like I should take my shoes off before I enter their hospital room because a person who dies with faith, hope, and love opens up for us truly sacred ground. All of us as clinicians, especially of the terminally ill, need to understand that the dying do have a role in society. It is to teach us what it means to be human, what it means to confront the mystery of our mortality and the mystery of suffering, to confront death with the spirit of faith, hope, and love in ways that can transcend our finitude and connect our deepest desires to their infinite source and goal. One young woman I cared for many years ago died of a rare cancer that had spread dramatically. By the time she saw me, she had decided not to have chemotherapy and just wanted a doctor who would care for her during this end period. She faced her death courageously and was an extraordinary example. She taught me what it means, even though she was estranged from her father who abused her, to find a community of friends–what we call a circle of care–to support her. I saw the value this community had in accompanying her through her suffering. Even though she said she didn’t want to see any chaplains, it turned out she had been seeing a priest, had been reconciled to the Church, and had a wish that I go to her funeral, which I did. All you can do in the face of that is reverence the Mystery made manifest in a person like that.

Speaking of beacons of clarity, your longtime friend,  the great bioethicist Dr. Edmund Pellegrino, has just passed on. Which of his vast contributions do you value most?
His very forceful article on this topic, “Doctors Must Not Kill,” is as strong and straightforward as its title. He was someone who provided lots of intellectual reasons for his position and didn’t shy away from using unsanitized language in confronting head-on the tremendous problems we now face in the well-organized movement to legalize euthanasia and PAS. Also, he gave a great example with his own life. This man continued to be a teacher, and up until four days before he died, he was lecturing an Ethics course to students at the Kennedy Institute with his last bit of energy and wit. It can only be through the grace of the Spirit that he was teaching to the end like that. Even his own doctor was shocked, and said of him, “There’s nothing in the tank–I don’t know how he’s doing this!”