Mirror of Justice

The Princeton Alumni Weekly has published the heart rending story of an alumna of the University who is suffering from terminal cancer and who is considering taking advantage of California's new "End of Life Option Act" which permits people in her condition to cause their deaths with drugs supplied by medical care givers for that purpose. She is a wife and mother of two who is a much admired law teacher and scholar at the University of California, Davis. I was interviewed for the story (which can be accessed here: https://paw.princeton.edu/article/lesleys-story) and some of my comments were included in it. I am here supplying the text of my complete interview. I am grateful to Carter Snead of Notre Dame Law School and John Keown of the Kennedy Center for Ethics at Georgetown whose expertise on the issue of assisted suicide I drew on heavily.

Q.  Morally or philosophically, what is the argument that a person in the last stages of a terminal illness should not have the legal right to end her life?

A.  I am profoundly saddened by this young woman’s terminal illness and suffering. Everything must be done for her that can be done, consistent with sound principles of medical ethics. Great strides have been made in palliative care, yet many people do not have access to quality palliative care. I hope she is not one of them. She and others who are terminally ill and suffering must never be abandoned. In the experience of many medical professionals and compassionate counselors with whom I’ve discussed these issues, the feeling of abandonment fuels despair. Many people who request medicalized killing do so because of depression, fear or despair. Indeed, studies have shown that 95% of people with suicidal ideation suffer from mental illness – 60% from treatable depression. Once their depression is treated or their fears assuaged, they change their minds. Both clauses in the anti-euthanasia slogan: “always care; never kill” are important.

Now to your question. First, we should note that killing patients, or helping them to kill themselves, has been prohibited by professional medical ethics and by the criminal law for centuries. This prohibition is grounded on a recognition of the intrinsic and inalienable dignity of every patient, however ill, however short his or her life expectancy, and however much the patient may, in his or her suffering or despair, have lost sight of his or her inherent worth. As the U.K. House of Lords Select Committee on Medical Ethics (which, though ideologically and religiously diverse, unanimously rejected the arguments for voluntary euthanasia and physician-assisted suicide) put it, the prohibition on intentional killing is the “cornerstone of law and of social relationships” which “protects each one of us impartially, embodying the belief that all are equal.”  A New York State ethics committee (appointed by then-Governor Mario Cuomo) composed of individuals who supported assisted suicide in principle nevertheless unanimously recommended against legalization because of the unavoidable risks of fraud, abuse, duress, and mistake that would fall disproportionately on the poor, elderly, disabled, and stigmatized minorities.  This is one key reason (among many others) why the American Medical Association, the World Health Organization, disabilities rights groups, the Boston Globe editorial page, Victoria Reggie Kennedy (health advocate and widow of the late Senator Edward M. Kennedy), and Obama administration health advisor Ezekiel Emanuel all oppose legalization of assisted suicide.

Opposition to medicalized killing is grounded in a recognition of the equality-in-dignity of all—the idea that no one has “a life unworthy of life,” or is “better off dead” or a “useless eater.” It reflects the belief that nothing should be done that gives credit to or encourages the adoption of these beliefs, even by those suffering pain and tempted to despair. It is no accident that the disability movement has been in the forefront of opposition to legalizing assisted suicide. Disabled people are among the most aware of the dangers of compromising the equal dignity principle and moving in the direction of judging the worth of people by their “fitness.”

Second, I notice that you’ve framed the question in the language of “rights.” I think that’s a mistake. The question whether we should allow medicalized killing and, if so, in what form and subject to what conditions and constraints, is inherently a social question. It has massive (and complex) implications for the whole of society, not least the medical profession and those, like the frail elderly, those afflicted by dementias, and the dying, who could so easily be judged to have lives that are no longer ‘worth living’. All of those implications must be carefully considered. Framing the question in the language of ‘rights’ tends to obscure them.

To mention just a few implications of changing the law, what would be the broader social impact of the abandonment of the ‘sanctity of life’ ethic? (This ethic, which has been foundational to our law and culture, does not require that life be preserved at all costs, but it does oppose intentional killing.) How would legalization affect the professional self-understanding of physicians, nurses, and other health care professionals?  How would it affect patients and their sense of obligation to family and society? How would it affect family members’ attitudes and their sense of what is reasonable and right in interacting with and in shaping (and even incentivizing) the decisions of their dying relatives? What would be the impact on the poor, the uninsured, the cognitively or physically handicapped, and other especially vulnerable people---people whose lives others sometimes regard as being of lesser value?

Q. The California statute (modeled on Oregon's) seems to be very carefully drawn to limit its application. It only covers persons who are expected to die within six months, as certified by two physicians--persons entitled to begin hospice care, in other words.  They must submit multiple requests in writing, with a waiting period in between. Physicians are not required to participate and indeed are forbidden from administering the life-ending drugs themselves; the patient must be able to do that. The slippery slope fears--that the law would permit impulsive suicide by someone with a diagnosis of, say, early-onset Alzheimer's, or an athlete rendered a quadriplegic in a car accident--would not seem to apply. Does this matter?

A. The Oregon statute, and statutes, like California’s, that are modelled on it, are not “very carefully drawn,” in my opinion. Professor Alexander Capron, one of the leading US health lawyers, has described the Oregon safeguards, as “largely illusory.” We simply do not know very much about what goes on in Oregon, as there are no effective means for data collection and no mechanisms of enforcement in response to noncompliance. The agency in Oregon responsible for administering the law has admitted as much, and has conceded that they are unable to verify that the data is free from misinformation. The Oregon law does not require mandatory psychiatric evaluations (despite the fact that a vast majority of people with suicidal thoughts suffer from treatable depression). It does not require doctors prescribing the lethal drugs to be expert in recognizing treatable psychiatric illness. It only requires doctors to refer patients for such evaluations if they suspect “impaired judgment.” The Oregon Assisted Suicide Handbook states that the presence of depression does not necessarily indicate impaired judgment. And doctors affiliated with pro-assisted suicide advocacy group “Compassion and Choices” (formerly “The Hemlock Society”) – 97% of whom prescribe lethal PAS drugs in Oregon – have stated that they regard depression as a fitting response to terminal illness. In contrast, a majority of psychiatrists polled believe that clinical depression should result in an automatic finding of impaired judgment. Relatedly, the Oregon law does not require an assessment of competency or voluntariness at the time of self-administration of the drug. Indeed, there is no requirement that a doctor (or any witness) be present at all.

There is also no requirement to consult with relatives to confirm the absence of coercion or undue influence by relatives or other parties who, for all anyone knows in any particular case, may stand to benefit or be relieved of burdens of one sort or another by the patient’s death. Neither does the Oregon law require an automatic referral for pain management, despite the fact that badly managed pain is an obvious reason why one might seek assisted suicide.

Nor does the Oregon law require the prescribing doctor to be trained in identifying or treating pain – a complex and increasingly specialized form of medical practice. Oregon rates very poorly among states in terms of its efficacy in managing patients’ pain, and its rating has declined since legalization of PAS. The Oregon law requires a diagnosis of “terminal illness” (a life expectancy of 6 months or less) for PAS eligibility. But it does not specify whether this is an assessment of the patient’s prognosis with or without life sustaining interventions. That is, pneumonia in an otherwise healthy patient could be considered a “terminal illness” if left untreated. Diabetes is a “terminal illness” without insulin. Moreover, calculating life expectancy is famously difficult with one study showing over 70% of patients deemed eligible for hospice care (using the same definition of “terminal illness” as an eligibility criterion) lived more than 6 months. The small amount of concrete data we do have from Oregon is quite worrisome. Only a small percentage of patients have been referred for psychiatric evaluations – a fraction of the 60% of the total population of suicidal patients suffering from treatable depression. There is no data collected on the outcomes of these evaluations. Only 13% of patients have been referred for pain management evaluation.
 
Moreover, even these insignificant limits will not, in any event, hold (just as they have failed to hold in other jurisdictions that have relaxed their laws, most notably the Netherlands and Belgium). People will argue—successfully—that if autonomy (or the right to moral independence, or whatever principle is cited as the basis of a right to assisted suicide) should be respected in the case of the terminally ill, it should be respected in the case of the non-terminally ill, who may have many years, not merely a few months, of physical or emotional suffering to endure. And since it will be presented and understood precisely as a right, the argument will successfully be made (1) that it should be available by way of substituted judgment (by a guardian or court) for people who cannot choose for themselves to exercise it, and (2) that medical professionals have an ethical duty to provide it even if they have religious or other conscientious objections to participating in assisted suicide. Further, (3) as there is obviously no moral difference between a physician supplying a patient with a lethal drug for her to kill herself (physician-assisted suicide) and a physician intentionally administering a lethal drug to the patient (euthanasia); as some patients are physically unable to end their lives even with assistance; as assisted suicide not infrequently fails to end life promptly; and as some patients would much prefer an injection to a prescription,  it is only a matter of time until states like Oregon decide to permit euthanasia. The change may well come in the form of a judicial ruling that the current law discriminates against those too disabled to commit suicide, even with assistance.

Q.  Is there a moral difference between a terminally ill cancer patient choosing to end her life by taking pills and one who refuses further medical treatment knowing that that refusal will lead to death?

A. The reason traditional medical ethics accepted a right to refuse life-sustaining medical care yet rejected assisted suicide and euthanasia is not obscure. There is a key difference between, on the one hand, intending death (one’s own or another) as an end-in-itself or as a means to some other end, and accepting death as the side-effect of an otherwise morally legitimate act. It is ethical for physicians to administer life-saving drugs to patients, foreseeing their bad side-effects. It is unethical for them to do so intending those bad side-effects. This distinction applies to life and death matters in war and elsewhere, and not just in the field of medical ethics.

Every day patients reject a treatment, even a life-saving treatment, as excessively painful or burdensome or expensive without making death their direct aim. It is parallel to accepting the death of innocent civilians as an unavoidable side effect of an otherwise morally justified military action. (There is a morally significant difference between General Eisenhower ordering the allied troops in on D-Day, foreseeing many of them will be killed, and King David ordering Uriah the Hittite into battle intending him to be killed.)

The Dutch, the pioneers of legalized euthanasia, agree that euthanasia involves intentional killing, not merely the foreseen and accepted shortening of life as the result of actions aimed at, say alleviating pain.

Q.  The woman I am writing about--and others I have spoken to--are adamant that this is not "assisted suicide." Suicide, they say, presupposes a choice between life and death.  In their case, their death is certain and imminent. They are simply choosing the time and manner of that death in order to avoid suffering or maintain control over their fate.  How do you respond to this?

A.  It’s a noble impulse that this woman wishes to reject suicide or find a way of distinguishing the policy she is defending from assisted suicide. Even in her suffering she wants to uphold the sanctity of life ethic by rejecting suicide. But the definition of suicide is performing an act with the intention of causing one’s death. In jurisdictions all over the world, if one assists another in causing his or her death, one commits the crime of ‘assisting suicide’. It is ‘assisting suicide’ irrespective of the victim’s life expectancy - whether the victim had only a month, a week or even an hour to live - and irrespective of the victim’s motive for seeking death.  Similarly, if a defendant is charged with murder for administering a lethal injection in order to stop another person suffering, it will not avail the defendant to claim: “It wasn’t homicide, because the victim’s death was certain and imminent, and in injecting the poison I was only choosing the time and manner of his death to stop him suffering.”

Q.  Many opponents of these laws argue that there is dignity in suffering and that those who suffer set a positive example for the rest of society. I remember that this was written about Pope John Paul II during the last years of his life. Surely, though, I am entitled to find dignity in my own suffering, but do I have a right to demand that you find dignity in yours?  If another person would rather avoid that suffering and escape a prolonged and painful end, shouldn't he have that right?

A.  How we deal with our suffering and find meaning in it, if we can, is up to us. No one can do that for anyone else. Nor can anyone demand that others find meaning in suffering. That is not the question. The question is whether we should allow physicians to kill patients, or help patients kill themselves, as a means of ending suffering or despair. That is a policy question that implicates many aspects of the common good of our civil society and legal order. It is not a religious question (like the question of whether there is a God, whether God spoke to Moses from a burning bush, whether Jesus is the Son of God, whether Mohammad is God’s prophet, etc.). Given the advances in palliative medicine in recent decades, such as the founding of the Hospice Movement in the UK by Dame Cicely Sanders, the case for assisting suicide to alleviate suffering has never been weaker. Palliative medicine has never been better able to alleviate suffering in the vast majority of cases. Even in the few cases of refractory suffering, there is the option of palliative sedation to render the patient unconscious.

Q.  In Oregon, it appears that fewer than half the people who obtain a prescription for life-ending drugs actually use it.  In many cases, people simply seem to want the assurance that they CAN end their life if their suffering becomes too great, and that once they have that assurance they are often more willing to let nature take its course.  Does this affect your views in any way?

A.  The large number of prescriptions for lethal drugs which are never is not really reassuring. It suggests prescriptions are being written for people who are not suffering unbearably. Indeed, as the annual official reports from the Oregon Health Authority show, suffering is not in any event the main reason that people have accessed physician-assisted suicide there. The two main reasons have been ‘losing autonomy’ and being ‘less able to engage in activities making life enjoyable’. And in the Netherlands and Belgium, there is now considerable support for suicide pills for old people who are simply ‘tired of life’. This is the royal road down which medicalized killing, sooner or later, takes a society. Hard cases make bad law

Q.  Can you recommend any further reading I should do on this subject?

A.  Emily Jackson and John Keown, Debating Euthanasia (Hart Publishing, 2012)

Neil Gorsuch, The Future of Assisted Suicide and Euthanasia (Princeton University Press, 2009)

Herbert Hendin and Kathleen Foley, The Case Against Assisted Suicide: For the Right to End of Life Care (Johns Hopkins University Press, 2004)

John Keown (ed), Euthanasia Examined: Ethical, Clinical and Legal Perspectives (Cambridge University Press, 1995)