Competency Is Key in Autonomy Regarding End-of-Life Care Decisions

Case law and research on the desire to die by patients with terminal illness points to a role for psychiatrists who are consulting on or treating patients with terminal illness that may be far more nuanced than traditionally understood.

Outlining that evolution during a symposium at APA’s 2017 Annual Meeting in San Diego, Rebecca Brendel, M.D., J.D., a consultant to APA’s Ethics Committee, cited as crucial the 1990 Supreme Court case Cruzan v. United States, establishing that patients have broad rights of self-determination that extend to end-of-life care, and the subsequent passage of the 1990 Patient Self-Determination Act.

In those two landmark cases, patient autonomy emerged as one cornerstone in the patient’s right to make end-of-life care decisions or to designate a health care proxy to do so. “Since a patient’s competency to make decisions is central to autonomy, consultation-liaison psychiatrists became involved in this—not just because these were for the most part medically ill patients in the hospital, but because we are used to doing capacity evaluations on a daily basis for all kinds of medical questions,” Brendel said.

Predictably, discussion about end-of-life care options would be extended from withholding and withdrawing treatment to more affirmative plans by patients to determine the timing and manner of one’s death. In 1997, Oregon passed the Death With Dignity Act, the first state to make it legal for physicians to prescribe a lethal dose of medication to a terminally ill patient wishing to end his or her life.

Meanwhile, research on the desire to die by patients with life-threatening illness was evolving. A significant body of early research in consultation-liaison psychiatry (primarily with cancer patients) appeared to establish that a desire to die was highly correlated with treatable major depression. This work was pioneered by, among others, consultation-liaison psychiatrists William Breitbart, M.D., Linda Ganzini, M.D., and Jimmie Holland, M.D.

Brendel said three essential points stand out from that work:

However, the picture regarding the relationship between depression and all desires to die began to appear less clear, she said, among patients with neurodegenerative disease (such as amyotrophic lateral sclerosis) who may be able to say at what point in their disease they would like to die, but who may not necessarily be depressed.

Also variable and complex are patients with spinal cord injury. “If you talked to newly quadriplegic patients in the period immediately following the spinal cord injury, there was a high desire to die early on and a recognition, for those patients who were ventilator-dependent, that they could make that decision not to be on life-sustaining treatment,” Brendel said. “The problem with that is that if you look at them a year later and talk to these patients about what their quality of life is, they will still physically not be what they were [prior to the injury], but they will tell you, on average, that their quality of life is much higher in many, if not most, respects than it had been prior to their injury.”

Now, with data from states such as Oregon that permit physician-assisted death, it has become even clearer that while depression may be present in the severely ill, many patients who desire to control the timing and manner of their death in the setting of terminal illness are not depressed.

So, how do psychiatrists, charged with the task of assessing competence or treating concomitant mental illness in terminally ill patients, proceed in an era when the law increasingly recognizes that patients have claims about choosing the timing and manner of their death?

“First, we have to see that not all desires to die are suicide in the traditional view—that by definition they result from mental illness and should be prevented,” she said. “But we also cannot and must not retreat from engaging in this dialogue. If we say that just because a patient has a legal right to die, he or she is thereby entitled to make that decision, then we abdicate our professional responsibility to help our patients both in the work of living and in the work of dying.” ■