The U.S. right-to-die movement took root in the mid-1970s, when Derek Humphry helped his wife, who was dying of breast cancer, take her own life. Five years later, Mr. Humphry founded the Hemlock Society, the first right-to-die organization in the United States,1 and set off a firestorm of controversy over assisted death in terminally ill patients that lingers today.
In 1994, Oregon became the first state to pass the Death With Dignity Act, which allowed mentally competent, terminally ill adults with a life expectancy of 6 months or less to obtain a physician-prescribed lethal medication that they can take on their own. However, resistance to the law by religious groups, medical associations, and disability activists delayed enactment of the law until 1997. Since then, eight other states (Washington, Vermont, Montana [court decision], California, Colorado, Hawaii, New Jersey, and Maine) and the District of Columbia have passed aid-in-dying statutes, and many more states, including Massachusetts, Maryland, New York, New Mexico, and Nevada, are considering similar legislation.
Despite outcries from opponents of assisted death claiming that facilitating suicide in any context devalues human life, support for death with dignity laws has remained strong in the United States, with 74% of Americans agreeing that “when a person has a disease that cannot be cured…, doctors should be allowed by law to end the patient’s life by some painless means if the patient and his or her family requests it,” according to the latest national polling.2 Support among physicians is growing as well, with 55% of physicians agreeing medical aid in dying should be made legal for terminally ill patients, up from 46% in 2010.2
It should be noted that although ASCO has not taken an official position on physician-assisted suicide, in a 1998 position statement on high-quality end-of-life care (which neither supported nor condemned the practice), the Society recommended that physicians engage their patients in discussions about their concerns regarding how they might die, explain what comfort care will be provided, and assure patients they will not be abandoned.3
Confronting Patients’ Request for Aid in Dying
Currently in the United States, about 70 million people—1 in every 5 Americans—live in a state with legal access to medically assisted death.4 However, actually accessing aid in dying can be an onerous process for patients. Most state laws require written and oral requests to obtain a prescription drug, waiting periods to get the prescription filled, a consulting physician’s second opinion, and a psychological evaluation by a mental health professional. They also provide opt-out provisions, allowing physicians to decline to participate in aid in dying and health-care systems to prohibit their involvement. The restrictions may help explain why over nearly 2 decades, only 1,545 patients in Oregon—the majority (77%) of whom were diagnosed with cancer—had Death With Dignity Act prescriptions written, and 991 patients took the medication and died.5
With the growing acceptance of medically assisted death in the United States, more physicians are likely to be confronted with a terminally ill patient’s request for help in hastening death.
Timothy E. Quill, MD
“Many physicians, particularly those in the fields of oncology and palliative care, will be faced with a request for such assistance sometime in their professional life,” said Timothy E. Quill, MD, Professor of Medicine, Psychiatry, Medical Humanities, and Nursing at the University of Rochester School of Medicine. “Regardless of where clinicians stand ethically and morally on the permissibility of this practice and regardless of whether these practices are legally permitted in a given jurisdiction, clinicians have to carefully consider how they will respond to patients’ requests.”
Dr. Quill was an early advocate of an informed, seriously ill patient’s right to have more choices about when his or her life should end. In 1991, he wrote about his experience treating a patient, Diane, with advanced acute myeloid leukemia, who made the decision to forgo chemotherapy and the prospect of painful days in the hospital to instead live her remaining time in comfort and in the company of her loved ones. At her request, Dr. Quill prescribed Diane barbiturates, which she later used to take her life.6
The controversy surrounding the publication of the article resulted in a criminal investigation of Dr. Quill’s actions, but a grand jury declined to indict him. The decision is credited with raising a national debate over the legality and ethics of physician-aided suicide.
Dr. Quill is the author and editor of several books on medical aid in dying, including Death and Dignity: Making Choices and Taking Charge (W.W. Norton & Company, 1994) and Physician-Assisted Dying: The Case for Palliative Care and Patient Choice (Johns Hopkins University Press, 2004). His latest book, Hastening Death by Voluntarily Stopping Eating and Drinking: Personal, Clinical, Ethical, and Legal Dimensions (Oxford University Press), is expected to be published this year.
In a wide-ranging interview with The ASCO Post, Dr. Quill discusses his evolution on physician-aided death; terminally ill patients’ main concerns and fears about the dying process; and the moral, ethical, and legal dilemmas physicians face when confronted with a request to assist in a patient’s death.
Bringing Medical Aid in Dying ‘Out of the Shadows’
You were at the forefront of the right-to-die movement in the early 1990s when you aided your terminally ill patient in suicide. Was yours the first openly conducted case of physician-assisted suicide in the United States?
No, Dr. Jack Kevorkian was arguing for the right of terminally ill patients to choose how they die before me. But he was on the edges of what ordinary physicians do and completely different from me. He was a pathologist, not a clinician. He had no experience with dying patients except in the last moments of their lives.
My situation was the first public case of a mainstream physician directly admitting to assisting in a patient’s death. I have credentials in hospice and palliative care, and my involvement in the right-to-die movement helped to take physician-aided suicide out of the shadows and legitimize it as a small but important piece, for some patients, of providing people with more choices at the end of life.
Regardless of where clinicians stand ethically and morally on the permissibility of [physician aid in dying]…, [they] have to carefully consider how they will respond to patients’ requests.— Timothy E. Quill, MD
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How difficult was it for you to aid Diane in her death, and what was the reaction from your colleagues?
Diane had been a patient of mine for a long time. It was extremely important to her to maintain control of herself and her dignity during the time she had left. When she made a very specific request to end her life in the least painful way possible, I wasn’t sure how to respond, partly because I had never had a direct request like this before. I had indirectly helped many patients die through my work as a palliative care physician, but I had never previously confronted this type of request.
I talked over my concerns with very experienced colleagues in my profession and learned that several of them had had a case or two in which they had assisted dying patients in this way in the past. It made me realize that there is potential legitimacy to this option, and I decided to help my patient. Although I did not directly assist in her suicide, I helped indirectly to make it possible, successful, and relatively painless.
If I had helped Diane in secret and hadn’t written about it, no one would have known what happened, and the story would have ended there. But I wanted to spur a conversation on a national level about the potential legitimacy of this kind of option, so I published the story.
Perhaps unsurprisingly, publication of the story led to significant public discussion and eventually legal scrutiny. I decided to waive my Fifth Amendment rights and testify before a grand jury, which subsequently chose not to prosecute me. That was the end of my legal trouble, but there remained a wide range of opinions among colleagues and the public about whether it was a good idea to assist her in this way, much less publish the article.
In 1996, you challenged the constitutionality of New York State’s ban on physician-assisted suicide. Although the ban permitted patients to refuse life-saving treatment on their own, it made it a crime for physicians to aid in patients’ death, even if they the patients are terminally ill or in great pain. You argued that the ban violated the Equal Protection Clause of the Fourteenth Amendment. The case went up to the Supreme Court (Vacco v. Quill), and in 1977, the Court ruled that, although patients have the right to refuse life-sustaining treatment, they do not have a constitutional right to end their lives with physician assistance.7 How did this decision impact the death-with-dignity movement?
Even though the Supreme Court ruled against us, the decision basically left it up to the states to decide the legitimacy of physician-assisted death and to potentially create laws to make the process legal. Nine states and the District of Columbia have already done so, and more states are considering passing death-with-dignity laws.
Deciding to Aid a Patient in Dying
What criteria do you use to decide whether to aid a patient in dying in this specific way?
Patients have to have a terminal illness and be cognitively capable of making a major life-and-death decision. They have to have access to good palliative care, which is the standard of care for seriously ill patients who are suffering. Assisted death should never be an alternative to good palliative care. The patients need to be seen by physicians who have experience caring for people with major illness and who might be considering assisted death.
The process is similar to decisions that are regularly made with dying patients who are on life-sustaining treatment and are considering stopping that treatment to achieve death—only these patients do not have such a treatment to stop. Patients and their physicians are legally and ethically empowered to make the former decisions, but when there is no life support to stop, even if the patient is suffering much more severely, options are more limited, unless they live in a state where physician-assisted death is legally permitted.
Wanting to Avoid Physical Suffering and Debility
You have interviewed hundreds of dying patients for your books on palliative care and physician-assisted death. What are patients’ main concerns at the end of life?
The main concern of patients is suffering in ways that are unacceptable to them. Some patients are also concerned about being a burden on their families, but mostly, their concern is about physical suffering. That suffering can be greatly reduced with adequate palliative care, which can address most, if not all, of the physical aspects of dying, including pain and shortness of breath.
The other major concern—and this is the tougher one to alleviate with palliative medicine—is the level of patients’ debility and dependence on medical care and family members. Not being in charge of one’s own body is a deal-breaker for many patients, and some want to skip that very late part of the dying process.
The big challenge is not making access to medical aid in dying too easy, because patients might choose it prematurely or without adequate thought.— Timothy E. Quill, MD
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Medical advances have resulted in helping patients live longer with a serious disease, and that is generally wonderful. But the reality of these advances is that they also often leave patients more debilitated in ways that are unacceptable to them prior to their death.
Ethical and Legal Dilemmas
What are some ethical, moral, and legal dilemmas physicians face when deciding on whether to assist patients in dying?
To begin, physicians have to determine whether physician aid in dying is legal in their state. If they live in an environment where it is illegal, physicians should look at all possible legally permissible alternatives. If those options are not available or acceptable to the patient, clinicians have to decide whether they are willing to break the law by providing the patient with potentially lethal medication and information about how to use it to achieve a wished-for death, or whether they are willing to guide patients toward an underground practice. Even in states like Oregon, where medical aid in dying is legal, physicians still have to decide whether they feel morally comfortable with the process and can live with themselves afterward if they participate.
Some physicians believe the practice is unethical or goes against their religious beliefs; if that is the case, they should not participate in the process, even if they live in a state where it is legally permitted. The main ethical and moral argument against medical aid in dying is that it is “killing” a patient or helping the patient kill him- or herself. But it depends on what you consider killing to be. If a patient is on life-sustaining support, you may say the patient has the right to stop that support, even if that means it is the desire of the patient to die now rather than later. If a patient is not on life support and is potentially suffering 100 times more than the person on life support, where is the logic in not helping that patient die?
The main argument in favor of medical aid in dying has to do with patient autonomy. It’s the patient’s life and death, and agreeing to assist the patient in dying reflects compassion for the patient’s wishes and situation.
Achieving Balance in the Process
What are some of your concerns about physician aid in dying?
The big challenge is not making access to medical aid in dying too easy, because patients might choose it prematurely or without adequately thought, but you also have to balance that with not making it too difficult. So, every safeguard you build into this process is another hurdle that people who are really sick have to go through.
The Oregon law is well thought out and a good model for other states to adopt, but challenges remain. For example, should the law provide for patients who are developing dementia or Alzheimer’s disease and want to make the decision while they are still mentally capable? How do you determine whether they are acting too early or too late? These questions are difficult to answer. This will become an even bigger concern as the population ages and the risk for mental deterioration increases.
The argument for having an open system regarding medical aid in dying is that everything about the process can be documented, including how patients and their physicians came to their decision; how they evaluated patients’ mental capacity to make the decision to start the process; and whether the family is in agreement, so at least you have some clearly defined safeguards in place. That is really critical, and it is similar to what we do when we take patients off life support. At that point, many physicians have seen the patient and evaluated his or her condition, and everything is documented. It is a good model for how we should proceed with medical aid in dying.
DISCLOSURE: Dr. Quill has received honoraria for speaking on palliative care and end-of-life care and has received royalties for books he has written on these topics.
REFERENCES
1. Childress S: The evolution of America’s right-to-die movement. Available at www.pbs.org/wgbh/frontline/article/the-evolution-of-americas-right-to-die-movement. Accessed March 16, 2021.
2. Compassion & Choices: Polling on medical aid in dying. Available at https://compassionandchoices.org/resource/polling-medical-aid-dying. Accessed March 16, 2021.
3. ASCO: Cancer care during the last phase of life. J Clin Oncol 16:1986-1996, 1998.
4. Death With Dignity: By the numbers: Death with dignity in 2018 and 2019. Available at www.deathwithdignity.org/news/2019/09/numbers. Accessed March 16, 2021.
5. Blanke CD, LeBlanc ML, Hershman DL, et al: Usage of Oregon’s Death With Dignity Act (DWDA). 2016 Palliative Care in Oncology Symposium. Abstract 44. Presented September 10, 2016.
6. Quill TE: Death and dignity: A case of individualized decision making. N Engl J Med 324:691-694, 1991.
7. Oyez: Vacco v. Quill. Available at www.oyez.org/cases/1996/95-1858. Accessed March 16, 2021.
End-of-Life Care in Oncology explores how to ensure that the care received by terminally ill patients is in alignment with their end-of-life goals and wishes.
