December 3, 2014
Private Decisions & Public Lessons
Joseph J. Fins, M.D., M.A.C.P.
Joseph J. Fins, M.D., M.A.C.P. is the Chief of the Division of Medical Ethics, the E. William Davis, Jr., M.D. Professor of Medical Ethics, and Professor of Medicine at Weill Cornell Medical College. He is the author of A Palliative Ethic of Care: Clinical Wisdom at Life’s End (Jones and Bartlett, 2006) and the forthcoming Rights Come to Mind: Brain Injury, Ethics and the Struggle for Consciousness (Cambridge UP, 2015).
The images of Brittany Maynard are heart- wrenching. A young woman, newly married in her prime, and dying of a glioblastoma multiforme. She decides not to seek treatment for her tumor, convinced it would be burdensome if not futile. Moving to Oregon where physician-assisted suicide is decriminalized and regulated, she bravely expresses her desire to end her life on her own terms. It is hard not to admire Ms. Maynard’s courage and to mourn this tragic loss.
Yes, we feel for Ms. Maynard, but does her choice and compelling narrative make for good public policy?
The great jurist Oliver Wendell Holmes, Jr. said that “hard cases make bad law.” He worried about the misinterpretation of facts and the miscarriage of judicial reasoning, “…because of some accident of immediate overwhelming interest which appeals to the feelings and distorts the judgment.” Such is true in the Maynard case. Her youth, the tragedy of her circumstances and yes, the media appeal of her story, can distort judgment and lead us to conclude that what seems right for her is good for others.
But it is not so simple. The care of the dying is a challenge that American medicine has yet to fully embrace. This year, the Institute of Medicine (IOM) of the National Academies of Sciences issued Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. The report outlined the clinical, financial and cultural barriers to good palliative care and made constructive recommendations for reform. An endorsement of physician-assisted suicide was not one of them.
In the 17 years since the last IOM report, progress at the end of life has been spotty. Although medical education has improved and palliative medicine became a nascent medical specialty, we have a long way to go to ensure that all Americans die as well as can be expected. We remain wedded to ever-more medical technology and intensive care that has become more intense due to new technologies unthinkable a decade ago.
Fundamentally, we are deeply divided. On the one hand, we remain a country that denies death. Instead of planning for end-of-life care with sensible interventions, like advance directives planning, living wills and health care proxies, we have become enmeshed in ideological debates about so-called (and fictional) “death panels.”
On the other extreme is the extension of patient self-determination to include a right to assisted suicide. Often motivated by ideology, this expansion of patient autonomy represents a libertarian desire to control the timing and manner of our death.
But it is a hollow quest for control. Physician- assisted suicide will neither negate the dread of death nor its sad aftermath. As the bioethicist Daniel Callahan has wisely written, no matter the desire for control, we can’t escape our mortality. Death is simply out of our hands.
But medicine is not powerless. We can control the pain and symptoms that burden life’s end. We can temper the use of aggressive, but disproportionate medical technology. We can talk with patients and families about forgoing resuscitation and opting for comfort measures. We can even withdraw life-sustaining therapies when they no longer serve a patient-centered purpose. And, if the pain is too great, we can sedate patients with strong medications to ease their passage.
These palliative care interventions are distinct from deliberately ending one’s life and consistent with long-established medical norms. In a moral universe where intent matters, these decisions must be distinguished from physician-assisted death. This was a point made when US Supreme Court considered assisted suicide in Quill v. Vacco and Lee v. Glucksberg in 1997. In rejecting a constitutional right to assisted suicide, the Court affirmed a right to palliative care, including pain medications that might secondarily hasten death.
It is too bad that more attention has not been paid to palliative care upon which most of us will depend. To our peril, we fixate on assisted suicide, a choice that is neither common nor normative. Consider this: Since Oregon passed its 1997 Death with Dignity Law, only 1,173 patients obtained a prescription for lethal medication. This is against the 33, 561 adults who died in Oregon just last year.
These data suggest that assisted suicide remains an exceptional act, chosen by a very small minority of dying patients. An even smaller number carry out this decision. (Only 752 of the 1,173 Oregonians who obtained a prescription took the pills.)
The Oregon experience reminds us that the needs of dying cannot be addressed by pharmacology alone. Life’s nal passage is more complicated than having a stash of pills in the medicine cabinet. Patients need comprehensive palliative care, including psycho-social and spiritual support to bring a balm to their suffering and fears.
Ms. Maynard is no exception. As I write on October 30th, she is rethinking her decision to die on November 2nd. I don’t know what prompted her hesitation, but by revealing her ambivalence she shares an important lesson: death and dying are more complicated than sloganeering about assisted suicide.
We can only hope that this young woman is free to find the comfort she deserves.
Argued To Death
Hannah Hill, Sagar Deshpande and Yael Shinar
Hannah Hill, Sagar Deshpande, and Yael Shinar are second year medical students at the University of Michigan Medical School and participants in the Ethics Path of Excellence. Hannah Hill is an aspiring surgeon scientist with interests in health services research, end-of-life issues, and clinical ethics. Sagar Deshpande is an aspiring surgeon scientist with active interests in oncologic and diabetic reconstruction. Yael Shinar is a former hospital chaplain and currently serves on the UMHS Adult Ethics Committee.
The story of Brittany Maynard, who recently chose to end her life after a difficult battle with brain cancer, has revived interest in the range of right- to-die questions, including physician- assisted suicide. We have seen a gradual change in attitudes both within and beyond the medical profession, generally revealing increasing acceptance of this option for terminally ill, mentally competent patients. In addressing the specific questions around physician-assisted suicide, it is important to consider whether participation in suicide can be compatible with a physician’s professional role.
The state of Oregon’s 1994 Death with Dignity Act provides guidelines for situations in which such compatibility prevails. It provides for physician-assisted suicide only when a patient is expected to live another six months or less. For such cases, this legislation outlines a legal space in which physicians may write prescriptions for lethal doses of medications for patients who wish to die by suicide. It defines medical situations in which suicide is a legal option, articulates characteristics of patients who may access this option, and delineates the process by which physicians may provide such prescriptions. The specifications of the Oregon law aim to protect both patient autonomy and physician professionalism, in the course of an ongoing dying process.
Many health care providers encounter dying as a matter of course, as part of their professional activities. Even as medical advances have turned once fatal illnesses into chronic conditions and technology facilitates the extension of life through the work of machines, people continue to die, and physicians are often there, accompanying them in that process. Innovations in sustaining life in extreme circumstances may change the timing of mortality, but not the fact of its inevitability.
The Oregon Death with Dignity Act intervenes not upon a question between life and death or between curative care and comfort care, but rather upon choices regarding the mode and qualities of the dying process itself. Most of us hold profound, personal ideas about the dying process. It is not the aim of the Oregon law to disrupt personal beliefs. Rather, the law allows physicians to work with their dying patients, to honor each patient’s own values and ideals. While the extension of life and the enhancement of its quality are primary goals of health care, physician-assisted suicide is not beyond its purview. Physicians not only dispense treatments, they also accompany patients on their paths and engage with patients in decision making, helping people to articulate their values and goals and seeking to match those values and goals with the most appropriate options from what is medically available. Such collaborative decision- making facilitates patient autonomy and makes space for the expression of diverse values among patients and physicians who may have different views regarding treatment goals.
Dying slowly with a terminal, debilitating illness may not be the preferred course for some people. Brittany Maynard’s brain cancer provides just one example of a disease with a dying process that may have been painful and alienating. For terminally ill, mentally competent adults, there exist alternative possibilities. Physician-assisted suicide may allow patients who choose it to express their personal and spiritual preferences, as they transition from life to death, perhaps prolonging their dignity, as they define it, through their dying processes. Thus, physician-assisted suicide engages the same standards of clinical practice as do other medical interventions: requiring appraisal of appropriateness to the situation, protecting patient autonomy, exacting physician beneficence, and evolving a course of action that aligns with patient values and goals.