What do we know about implementation of Physician Assistance in Dying (PAD)

I followed on-line the two-day workshop “Physician-Assisted Death: Scanning the Landscape and Potential Approaches —A Workshop,” sponsored by the National Academies of Science, Engineering, and Medicine (NASEM) and held February 12 and 13 in Washington, D.C. (PAD is used as an acronym for Physician-Assisted Death, Physician-Assisted Dying, Physician Aid in Dying.)

Workshop participants included medical doctors, bioethicists, professors, and other professionals and individuals affiliated with a variety of institutions and organizations, including the University of Washington, Oregon Health and Sciences University, Georgetown University, UNLV, Center for Elder Care and Advanced Illness, NIH Clinical Center, UCLA, Stanford University, Mitchell Hamline School of Law, Oregon State University, George Washington University, San Francisco State University, Dana Farber Cancer Center, University of Rochester, UNC Chapel Hill, UCSF, Mission Hospice, NYU Winthrop Hospital, SNP Alliance, Oregon Hospice and Palliative Care Association, Oregon Health Authority, Amsterdam Public Health Research Institute, University of Toronto, University of Colorado, The Hastings Center, Compassion and Choices, and Not Dead Yet. A few individuals with with PAD experience attended, as well.  The workshop was announced with the following description:

This National Academies of Sciences, Engineering, and Medicine workshop will explore the evidence base and research gaps relating to the implementation of the clinical practice of allowing terminally ill patients to access life-ending medications with the aid of a physician. The workshop is sponsored by the Greenwall Foundation. The workshop will examine what is known, and unknown, about how physician-assisted death is practiced and accessed in the United States; it will not be a focus of the workshop to discuss at length the moral or ethical arguments for or against the practice of physician-assisted death. The workshop will serve as a neutral space to facilitate dialogue in order to help inform ongoing discussions between patients, their providers, and other health care stakeholders.

Debating PAD

The workshop was not intended to discuss or debate the rightness or wrongness of PAD, but a majority of presenters and participants felt it necessary to announce whether they were for or against it. No one focused on my view, which is that I favor a right of individuals to choose medical assistance in dying, whether that is provided by doctors, physician assistants, or some other medical professional. I advocate for the right to choose PAD. I don’t advocate for PAD. My position is similar to that of the Final Exit Network, whose Guiding Principles include these:

We hold that mentally competent adults who suffer from a terminal illness, from intractable physical pain, or from a constellation of chronic or progressive physical disabilities, or who face an impending loss of autonomy and selfhood through dementia, have a basic human right to choose to end their lives when they judge their quality of life to be unacceptable.

We hold that a mentally competent person with intolerable suffering or pain has the right to end his or her life, choosing the timing and persons present, and should be free of any restrictions by the law, clergy, medical profession, friends or relatives.

We do not encourage anyone to end their life and are opposed to anyone encouraging anyone to end their life.

We do not provide the means for self-deliverance and we do not assist in self-deliverance.

We support research for safe, inexpensive medications or other safe, certain and painless methods that would allow for a peaceful self-deliverance.

For me, it is an important distinction that I advocate not for PAD, but for an individual’s right to choose PAD. That decision belongs not to me or society or a doctor, but to each individual. Two or three participants in the workshop seemed to adhere to the view that no one should have this choice. John Kelly, from the disability rights group Not Dead Yet, was the strongest advocate for this position. He sees it as his right to deny me a right that I consider essential to my future well-being.

As one of my friends put it, “The Not Dead Yet folks just are incapable of understanding that they want to require my suffering in order to protect them from being able to make their own decision.”

Aside from the failure to make this distinction, the workshop identified many important issues in the implementation of PAD and pointed to numerous areas of research that would benefit both patients and medical providers as the question of PAD is raised more frequently in the future.

Demographics of PAD

Several issues struck me as particularly important from a public policy perspective. Looking at the demographics of those who have used PAD laws to hasten their own deaths, it is clear that a majority are white and relatively affluent; i.e., most have health insurance. This is not true for many minorities, who have not used PAD laws at rates equal to their frequency in the overall population. It is possible that this infrequency results from a lack of medical resources that might bring them into contact with information about PAD, or perhaps minorities are, with good reason, less trustful of the medical system. However, it may be that the educational disparity between whites and minorities is a factor, or there could be other reasons involving religion or cultural differences that can explain this phenomenon. But we don’t know why whites use PAD more than minorities do, and research should help us determine this so that the full range of medical service is available to all.

The rhetoric of PAD

Another clear lesson from the workshop is that the language we use to describe and talk about PAD varies based on some common differences. Even the acronym PAD had different meanings for workshop participants–Does the “D” stand for “death” or “dying,” for instance?

Another significant difference in language use is that, in most cases, those who want to talk about physician-assisted suicide oppose PAD. They misunderstand why people use PAD. This misunderstanding was clarified by Dan Diaz, the surviving husband of Brittany Maynard, the 29-year old California woman who moved with her husband to Oregon so that she could receive PAD services when the complications of glioblastoma, a brain cancer, became too severe and uncontrollable to make continuing to live tolerable.

In direct response to another workshop participant who insisted on referring to Brittany’s choice as suicide, Diaz said that he was incorrect. People commit suicide because they want to die. Brittany wanted to live. She used Oregon’s PAD law because she could no longer live, without intolerable suffering; but she definitely wanted to live, not die. It is simply a misnomer to refer to those who use PAD as committing suicide. Diaz explained the difference by saying that those who use PAD “want to live as long as possible before having a gentle death.”

This view should be contrasted with a position taken by some that there is no neutral language when referring to PAD because the terms we use advance an agenda. That may be true, but it is clear that Physician-Assisted Dying is a far less loaded term than Physician-Assisted Suicide. Once one understands Diaz’s explanation of the difference between suicide and seeking a peaceful death, continuing to use the term suicide in such a context shows obdurate disrespect for the personal values and existential concern of a person such as Brittany Maynard.

Voluntariness in PAD

Another issue discussed by some participants involved how to assure voluntariness. One participant suggested that the act of opening capsules of a lethal drug so that a sufficient quantity of the substance can be mixed with a liquid suitable for drinking does not, in itself, guarantee voluntariness. The person could have been coerced to do that act.

Another suggested that coercion is an issue in other medical choices, as well, such as discontinuing or refusing a medical treatment. One way to diminish coercion, suggested by Thaddeus Pope, is to use a Certified Patient Decision Aid, a trained person who could help assure that there is no coercion. Such help also can reduce or prevent discrimination against the disabled in making medical choices of all sorts.

Meaning of dignity in dying

Though it had nothing to do with the topic–looking at research issues in PAD–John Kelly of Not Dead Yet brought up, at least twice, his view that a loss of dignity means for non-disabled people that they experience “bodily shame and humiliation” when they need assistance with bodily functions. Undoubtedly, some non-disabled people feel this way. It may be a reason some men delay having a rectal prostate exam or some women put off gynecological exams. That is one reason people have privacy when undergoing such procedures. Different cultures and individuals have different views of nudity, but that doesn’t mean one is right and the other wrong, one superior and one inferior. The same is true of bodily functions.

If the use of the term dignity interferes in our ability across all categories of people to fairly discuss PAD, perhaps we should avoid the term. I have favored, of late, referring to the desire for a humane death, just to avoid any association with Kelly’s view of the term dignity.

Competency and PAD

The issue of competency concerned many workshop presenters, though most seemed to think that there are adequate ways to determine competency among the practices now used. One professional suggested the use of the Aid to Capacity Evaluation (ACE), an instrument available for review.

This post is not a thorough report on the workshop, just some observations of the author. A more complete report will await the distribution of the slides and materials presented by the participants. But, at the least, I think it is fair to say that the workshop identified many more areas of inquiry and research than most would have imagined. To fully understand the way PAD laws are being implemented will require much more data than are now available.