Freedom for the Dyinginfo@CompassionAndChoicesNJ.org
Freedom for the Dying
The title of my talk is "Freedom for the Dying". We have a lot to do this morning, but first, let me tell you where we’ll be going. I have three objectives. First, to show that there is no principled distinction in most end-of-life situations between the removal of a life support—like a ventilator—and having a physician intentionally give the dying patient a lethal overdose. And as the former is fully allowed, so should be the latter.
Second, to demonstrate by examining some of what recently happened at the World Trade Center that basically we all agree: when a person is faced with inescapable suffering that person is ethically entitled to take his or her own life in order to avoid or end such suffering.
Third, to demonstrate that the campaign to affirm freedom for the dying is in the grand American tradition of fighting for freedom everywhere. For instance, to free the slaves, for women’s suffrage and the campaign to affirm women’s freedom over their own reproductive decisions. And that if, for example, we want to end slavery in the Sudan, end the oppression of women in Afghanistan, and end forcing women into back alley illegal abortions in much of the world—integrity of thought compels us to work for freedom for the dying as well.
My talk asks us to make reasoned and principled ethical distinctions and to treat like circumstances with like results. Humanism, Ethical Culture—the faith tradition from which I come—and the core of Unitarian Universalism, as I understand it, are united in all treating each person as of inherent worth. Each person is entitled to have his or her worth and dignity respected.
But what in fact are we doing today in the United States and most of the Western world? In its celebrated SUPPORT study of 1995, the Robert Wood Johnson Foundation found that in half the cases dying persons in the last three days of their lives were subject to unnecessary pain or suffering half of the time. We are all going to die. Those are not very comforting odds.
True, there have been some real advances since then. The American Medical Association has pushed a new program to educate physicians in end-of-life palliative care. Some of the great teaching hospitals and university medical schools have new courses and special programs in palliative care, notably Harvard Medical School and New York City’s Mt Sinai Hospital. And there are many others across the country.
Still, widespread anecdotal evidence suggests that the dying in many—if not, indeed, most—cases are subjected to sub-par, unacceptable palliative care. So that in many cases they are dying in pain and suffering. In effect the dying who are not given adequate palliative care are being tortured by their underlying disease, and the doctors who should respond are not adequately responding. They are standing by ineffectually while the torture continues.
Today in America—and, indeed, in the whole of the Western world—a dying, intractably suffering patient is entitled at law to have a life support system—like a ventilator—removed in order to end the patient’s life and thus suffering. Again, throughout the whole of the Western world it is settled that such a patient is permitted to refuse food and liquids, and with pain control go into a coma and die in a week to 10 days. It is said to be not a difficult dying, because the body generates its own pain-killers in the process, endorphins, akin to the opioids.
But what if an intractably suffering patient is not on a life support system and doesn’t want to go the route of voluntary cessation of nutrition and hydration? Why not permit her to ask her physician to give an overdose and end her life quickly, surely and humanely? The law in the West today, except in the Netherlands and Colombia and for physician-assisted dying in Oregon, seems to be that for the physician to cooperate is a crime: assisting (or aiding) in a suicide. In New Jersey that can get one up to 10 years in jail and a $100,000 fine.
But is there a principled distinction between letting die in the widely permitted cases of removal of life supports and voluntary cessation of food and liquids and killing via euthanasia in the second case? In the early years of bioethics we quaintly used to call the removal scenario "passive euthanasia"—which was and is allowed—while a physician administering a deliberate overdose is engaged in "active euthanasia"—a forbidden and, indeed, criminal act. Today that contrasting terminology is passe. Removal of life supports is now simply just that.
But is there a principled distinction between such cases if the patient and the physician both intend that the patient die—whatever the American Medical Association may continue to claim and whatever the U.S. Supreme Court may have declared—for the time being—on the issue in 1997 in Vacco v. Quill? Back in the second January issue in 1975 the philosopher James Rachels offered an elegant three-page essay entitled "Active vs. Passive Euthanasia" in the New England Journal of Medicine (vol. 292:78-80). This claimed there was no principled distinction in such a case between "letting die" (as by removal of a life support) and "killing" (as by giving a morphine overdose).
Professor Rachels offered a hypothetical to affirm his thesis. Assume that Mr Jones is 25 and is the heir of an estate with his 6-year-old cousin. He decides to kill his cousin in order to secure the entire estate. And to this end he enters the bathroom where the young boy is bathing and holds him under water until he dies.
The second part of this example has the same initial assumptions, but here as the hypothetical Mr Smith enters the bathroom he notices that the young boy has slipped, struck his head on the side of the tub and fallen face down in the water. Here Smith is ready to hold the child’s head under water if it should be necessary. But it isn’t. The child expires without any intervention by Smith.
Would you argue that there is any real distinction in the culpability of Jones and Smith? Are not they both equally culpable of the death of the young boy?
Why is it that we all come to that conclusion? It is because both of the great schools of ethics in the West here agree. These two great schools could be labeled the "intent" school and the "results-oriented" school. The great Immanuel Kant is the champion of the former: an act is to be judged by the intention of the actor.
The "results-oriented" school has many somewhat varying columns in support. There are Bentham and Mill for the utilitarians, who champion the increase of happiness. There are James and Dewey and the American pragmatists. There is Princeton’s Prof. Peter Singer as a "neo-utilitarian", whose position might be over-simplified to this mandate: act so as to decrease suffering. Basically, this school says that we are responsible for the consequences of our actions: both what we directly cause and what we could avoid at little or no cost to ourselves. Indeed, another label for this school of ethics is consequentialism.
Okay, intent vs. results. But in our hypothetical they both come together. Both Jones and Smith intended to kill the young boy. As for the results, the young boy died in each case. That in the second case Smith didn’t do anything is ethically irrelevant: he could have and should have but failed to. He is ethically equally culpable.
(Although at settled Anglo-American law today he is not liable, neither civilly nor criminally. Maybe we should change that law. As was perhaps suggested in the final Seinfeld episode: you recall, where Jerry and his friends were all convicted of a crime which today does not exist: criminal indifference.)
By a parity of reasoning, where the dying patient and the physician both intend the patient’s death, there is no principled ethical distinction between "letting die" as by removing a life support and "killing" as by giving a morphine over-dose. (The latter having been done to Sigmund Freud, to George VI of England—the present Queen’s father—and quite probably to Jacqueline Kennedy Onassis.)
All honest palliative care specialists concede that in some cases they cannot achieve fully effective palliation without rendering the patient unconscious. (Which to many is a more abhorrent state if long continued than death itself.) There is disagreement as to what percentage of cases fall into this class where acceptable palliation cannot be achieved, even by the most skilled M.D.s. Maybe it’s 5%, maybe it’s 3%, maybe less. That it may be around 3% is suggested by the Dutch statistics that some 3% of the dying there elect the Dutch way of dying in difficult circumstances: by having their physicians end their suffering through euthanasia.
The dying for whom we cannot achieve acceptable palliation and who abhor long continued unconsciousness are entitled to that palliative care treatment of last resort which is voluntary euthanasia or—at the very least—physician-assisted dying. Let me make clear how I use those two terms.
Voluntary euthanasia — or simply the word euthanasia alone — is when a physician responding to the repeated requests of his adult patient with decision-making capacity acts directly to end the patient’s suffering through administering a lethal dose. Physician-assisted dying (some would say "physician-assisted suicide"—but I think that term unnecessary and distinguishable) is when the physician in response to a like factual situation merely writes the prescription for a lethal dose which the patient may—or may not—later elect to self-administer. Often we refer to physician-assisted dying by its acronym: PAD.
Let me repeat: the dying are entitled to have their intractable suffering ended. As we respect the worth and dignity of each person we cannot deny that. But if that cannot be achieved by the skilled pain-management physician in a manner acceptable to the patient, then the dying patient is entitled to euthanasia or—at the very least—PAD.
Now, as to our second objective, let me lay out a concise factual situation like Prof. Rachels. But in this case, alas, something that was not a hypothetical. Do you recall that horrifying photo that ran in many newspapers on Wednesday, Sep. 12, of a man plunging headfirst toward the pavement from a World Trade Center tower? It is reasonable to conclude that such man chose to jump to his death rather than stay in his office and be burned alive. Who among us would not have made a similar choice? We all agree that faced with inescapable, intense suffering one is ethically entitled to commit suicide in order to avoid or end such suffering.
But is not that fully allowed choice parallel to what the dying, intractably suffering patient does in choosing to take an overdose of barbiturates to end her life—or in having her compassionate physician administer an overdose to end her suffering? Is suffering from disease of less dignity than that when one is faced with being burned alive? If the man who jumped was justified, why is not the cancer-riddled woman who takes an overdose to end her suffering through death? And if we can ethically aid the man at the World Trade Center to jump in order to escape the flames, as by opening a window for him, why cannot a physician aid an intractably suffering patient to die by PAD or euthanasia?
Some argue that the Right to Die Movement is an irritating distraction—that it diverts time and energy from the "real" end-of-life problem—which is respectful care for the dying and better palliative care for them. That is a false dilemma. We can and should do both. True, achieving full freedom for the dying is not a social problem of the same magnitude as AIDS in Africa and throughout the world—nor world hunger. Nor terrorism. Nor oppressive regimes throughout the world.
But if it be a small and circumscribed problem to us, it is a toweringly huge problem to those affected by it. And our fidelity to the worth of each person compels us to act.
Again, if our denial of freedom to the dying is a smaller problem (than, for example, AIDS) it is one here and now that we can easily solve—unlike those other great world social problems. The lack of freedom for the dying is something we can do something about right here in America—by enacting a liberating law, much like the Oregon Death with Dignity Act.
It’s hard to believe that only 150 years ago in much of America human beings were routinely whipped and treated like cattle, bought and sold. This was slavery—right here in America. We look back amazed that supposedly civilized people could have engaged in such practices.
And 125 years ago married women could not hold property. Their husbands administered their property. And no woman could vote—the vote only came to women in 1920—or serve on a jury. Your mothers—and fathers—, your grandmothers and grandfathers fought to gain freedom for women here in America. Again, we are amazed at how the prior condition of women disrespected could have happened—only a few years ago.
It’s hard to believe that after 600,000 Americans perished in the Civil War, and we had with the Emancipation Proclamation and the 13th Amendment freed the slaves, that as late as the 1970s in much of the South most of our black citizens at the practical level could not vote, serve on juries or exercise all the rights of white citizens. This was Jim Crow.
At the same time in many states women could not freely make reproductive decisions as to their own bodies—because abortion was a crime. Roe v. Wade was decided only in 1973. And—appalling as it is—there are still efforts today by the highly organized Religious Right and so-called Right to Lifers to whittle away at and roll back women’s full freedom as to their own bodies.
Today I remind you that another group of Americans is not fully free: the dying. The dying are in too many cases treated like infants or incompetents. Their wishes and needs, their directions as to their care—these are not respected. As a society we are disrespectful of the dying in their final months, weeks and days.
The Right to Die Movement—I prefer to call it the Freedom for the Dying Movement—thus is in the American tradition of fighting to increase freedom for all persons. It is in the tradition of the Abolitionists, of the Women’s Suffrage Movement, of all those who organized and agitated and struggled to end Jim Crow and segregation—many who went to the South and marched at Montgomery and elsewhere, some suffering attack and jailing and even death. It is in the tradition of those who fought—who today fight—for choice in women’s reproductive decisions.
If we oppose slavery in the Sudan and Mauritania, if we oppose oppression and torture in the Congo, Tibet, and elsewhere, if we oppose the severe discrimination against women in much of Africa and the Mideast—and in Afghanistan and Iran—which is akin to slavery—if we oppose every act and policy which denigrates the human spirit and disrespects the worth of each person—then out of integrity of belief we are fairly called upon to oppose the oppression of the dying—today—in America.
Join us, join the Hemlock Society in fighting further to extend freedom: Freedom for the Dying. I do not ask you to risk your lives—as so many have done over the centuries in achieving the increases of freedom we have steadily won in America. As so many recently did in the defense of our freedom: at the World Trade Center, on Flight 93 and elsewhere.
I ask for some of your time, effort and creativity and a bit of your money. If you feel compelled by your integrity of belief to join us in this sacred, life-affirming activity, go to our website — www.hemlockNJ.org — talk with me later today or telephone us to find out how you can enlist in the struggle for freedom for the dying. So that in just a few years we can look back—as we do now to the time of slavery—look back amazed at this time when the dying were not free. Thank you.
This talk was given at the Somerset Hills Unitarian Universalist Congregation, on October 21, 2001, by Winthrop Thies, former President of The Hemlock Society of New Jersey (the predecessor organization to Compassion and Choices of New Jersey, Inc.).