End-of-Life, Physician-Assisted Dying Challenge Traditional Medical Ethics

In 2011, SungEun Grace Lee, age 26, was diagnosed with an inoperable brainstem tumor and treated with chemotherapy and radiation. After a serious seizure the following year, she was given a feeding tube and placed on life support.

Paralyzed from the neck down, she requested that life support be withdrawn. Her parents challenged that decision in court, claiming that withdrawal of life support was tantamount to suicide. A consulting psychiatrist who testified in the case was quoted by the New York Times as saying he did not think of removing her life support as suicide, but rather that “she didn’t want to live in the way that she was currently forced to live.”

A state appeals court ruled in Lee’s favor, but a week later she changed her mind, went home to her family, and remained on life support until she died in her childhood bedroom in February 2013.

One year later, 29-year-old Brittany Maynard died after ingesting a lethal dose of medication legally prescribed by a physician under Oregon’s Death With Dignity Act. Diagnosed earlier that year with stage IV brain cancer, Maynard spent the last months of her life advocating for “death with dignity” and was instrumental in reigniting a fiercely contested debate about medically assisted dying. At the time, medically assisted dying was approved by public referendum in Oregon and Washington, by court order in Montana, and by state legislation in Vermont. Since Maynard’s death, California, Colorado, Hawaii, and the District of Columbia have approved similar laws, and several other states have considered it.

The nationally publicized cases bring to the fore an area of medicine in which psychiatrists are likely to be ever more involved—especially around determinations of capacity for decision making—and which engage profound ethical and legal questions for all physicians: How do doctors balance respect for patient autonomy and for the value of a “dignified death” with the duty to “do no harm” and the traditionally understood obligation to preserve life?

It is a debate heightened by the growing recognition in recent decades of patient rights, but also by the evolution of medical technology that has made the indefinite extension of life possible.

Physician aid-in-dying (PAD) laws have become the most heated flashpoint in this debate. But experts who spoke with Psychiatric News said that the contentious nature of the issue has obscured the role of palliative care of terminally ill patients.

“The way these laws are written, in practice it’s just a very small proportion of dying patients who might qualify for medical aid in dying,” said Nathan Fairman, M.D., M.P.H., a psychiatrist, palliative care specialist, and director of the End of Life Option Act Program at the University of California, Davis. “The amount of attention this law has received is sometimes frustrating, because it’s eclipsed a much broader need for improved end-of-life care.

“In the intersection between mental health and illness and end-of-life care, there is an enormous space for psychiatrists to be involved,” said Fairman. “Patients with advanced medical illness experience the complete range of psychiatric symptoms and come to the end of their life with their own unique personality characteristics. These are aspects of the end-of-life experience that make psychiatrists uniquely qualified to be involved.”

The ‘Coda’ is Not Vita as It Was

That “enormous space” described by Fairman is one inhabited by patients who have entered a distinct phase of life—between the one he or she knew as a healthy individual and a death that may be more or less imminent.

Psychiatrist J. Michael Bostwick, M.D., of the Mayo Clinic has coined the term “coda da vita”—tail of life—to describe this stage. “It used to be that there was life and there was death, clearly demarcated,” Bostwick said. “Today with modern technology and medications, we can extend life in ways that formerly we could not. This has led me to think about a third life stage, the coda da vita, which recognizes that there is something different about you when you are being kept alive with technology that in another era would not have been possible.

“Coda da vita is not business as usual, and is not ‘vita’ as it was, but is life on borrowed time,” he said.

The “coda” will invariably be different for different patients and the role of psychiatrists will, perforce, be different: in some cases, helping patients adjust to and thrive to the extent possible in a changed life circumstance; in others, helping the patient prepare for a death. At last year’s Annual Meeting in San Diego, where Bostwick introduced the concept of coda da vita, he was joined by Rebecca Brendel, M.D., J.D., a consultant to APA’s Committee on Ethics, who outlined the evolution of case and state law whereby “competence” became a core concept in a patient’s decision making about end-of-life care, as well as the evolution of research around determinations of competence in patients with various forms of terminal illness. She is director of the master of bioethics degree program at Harvard Medical School and assistant professor of psychiatry at Massachusetts General Hospital.

What that research suggests, Brendel said, is a set of circumstances far more complex than traditional medical/psychiatric ethics has accounted for: not all desires to die are necessarily “suicides” as traditionally defined, but—at the same time—some desires to die may be the transient wish born of a dire situation. “We have to become more sophisticated in our thinking about different phenomenologies of patients who wish to die and how we as psychiatrists engage with them,” she said.

She likens the stage to the aftermath of trauma and said that the concept of coda da vita is useful. “When something bad and life-altering happens to you, it overwhelms your capacity to cope,” she said. “People often want to die because they are not the same as they were. But perhaps we need to preserve a space for people to have time to cope. The coda da vita becomes a critical way to think about this conundrum. As psychiatrists, we might say, ‘Maybe your life is different now, but there are more options for you than you imagined.’ We do work like that all the time to help people recognize what their options might be.

“So, psychiatrists can help, of course, with the work of dying. But we need to make the time and space available to engage the coda da vita and think about what the options might be.”

The question, Brendel said, becomes how do psychiatrists juggle two competing professional responsibilities? On the one hand, they assist patients with the work of coping and seeing options in the setting of traumatic events; on the other hand, they work with patients to help them find their voice about what they want and do not want in end-of-life care, and respecting those competent wishes.

Bostwick and Brendel agree that ethical guidelines have not kept up with the pace of change forced by state laws, evolving public opinion, and advances in medicine and technology.

“Part of why this issue is becoming prominent for physicians is that the ethics are not fully formed for physicians regarding what to do about patients in the coda,” Bostwick said. “The technology has come first, before we fully appreciate the implications.” ■