Reflections on the debate on disability and aid in dying

We all have our own views 

Polling surveys repeatedly document that the American public is highly divided on the right to physician-assisted dying. Opinion polls on the issue report roughly equivalent numbers of supporters as opponents, with wording of the survey question being critical in determining in which direction the majority opinion will fall [1], [2]. Opinion of the organized disability community was united in opposition [3], but individual opinions of persons with disabilities were more mixed and similar to the general population (see Drum et al. [4] in this volume).

Living in Oregon during the years that the Death with Dignity Act was passed and implemented, I witnessed the highly passionate and volatile debates on the bill. Disability advocates were not highly visible in the Oregon debate, and active public opposition came primarily through religious organizations arguing for the sanctity of life. For some opponents, the Oregon Death with Dignity act was seen as “pure evil.” But for other Oregonians, it was regarded as a humanitarian policy in line with other socially progressive policies of the State. After all, wasn't Oregon the first state in the country to enact a bottle recycling bill in 1971, and a pioneer in reforming public funding of health care to achieve near universal coverage in the early 1990s?

I also had more personal involvement with dying. In the spring of 1996, my father-in-law was diagnosed with terminal cancer. He was a man whom I loved deeply, and I flew to Illinois to support my mother-in-law in providing home respite care during the last weeks of his life. He struggled with nearly continuous pain and I should have recognized, but didn't, that he was likely undermedicated for most of those last weeks. During a period of lucidity, he let us know he wasn't ready to die yet and lived for another week before passing away quietly. Participating in his dying had a profound impact on me, and more than a decade later, I understood with greater compassion the accounts of families' wanting to respect their family member's wish to die a more rapid death [5].

Some members of the APHA Disability Section committee regarded the policy as reprehensible on moral grounds, while others opposed it because of its threat to disability rights. Because of my personal experiences of living with the Oregon Act for a decade and recognizing its potential value, I was more ambivalent on the issue and had stepped back from a leadership role, offering instead to review relevant research.

It's highly personal 

The formal guidelines on development of APHA policy indicate that policies should be based on scientific evidence. Objectivity of science, however, readily slipped away. The language of the original resolution relied on argument and persuasion, and only presented science that supported the resolution. The Disability Section experienced a similar phenomenon. Despite an early recommendation that the group set aside personal feelings on the topic and focus on the implications for disabilities, one member noted, “How can you?—It's all too personal.” The issue rapidly became polarized.

When the Disability Section executive committee solicited section members' views, their responses reflected an array of personal opinions. One health care provider advocated that support for the resolution be framed in extremely clear language to protect any health care professionals who might implement the policy; another member opposed it on the presumption that it was specifically directed toward ending the lives of people like her aunt who have disabilities. Passionate personal advocacy was not exclusive to the disability community. When members of our committee met with the Oregon Public Health Association (OPHA) leadership, one OPHA member became highly impassioned, arguing that right to assisted dying should not be “held hostage by the disadvantaged few.” He described a family member who had recently become quadriplegic as a result of a motor vehicle collision, and questioned whether life with such a severe disability was worth living. The essence of his argument was that significant disability should entitle a person to the right to end their life. This interpretation went far beyond the Oregon law and the proposed resolution.

Confusion among key concepts 

This passion-based approach likely contributed to confusion among key concepts in the debate. Importantly, the initial policy proposal did not distinguish advanced directives (e.g., “do not resuscitate” orders) from aid in dying (actively hastening death). These changes were subsequently made. Of greater concern was that, in discussions with APHA and OPHA members, terminal illness was often presumed to include severe disability. In discussions that became emotional and personal very rapidly, at least some public health professionals were assuming that severe disability would be included in the category of terminal illness and would be adequate basis for assisted dying.

I might want it for myself 

A theme that often emerged in the discussions with public health professionals was “I might want it for myself”. This proposed policy clearly had highly personal meaning for many involved in the discussions. This is consistent with national polling results [1], [2] where, depending on wording of the question, about half of the public will support physician-assisted dying. Many people want the option of a hastened death under some circumstances in their abstract personal future. Yet, few will ever exercise that option when it is available. The Oregon annual reports [6] show that after a decade of the Death with Dignity Act, it is exercised by less than 90 people per year, and accounts for less than 16 per 10,000 annual deaths in Oregon. While one must meet criteria to be eligible for this option, its popularity still seems based more on potential use in an abstract future, than on likelihood of actual use.

It's about control and not about pain 

The language of Oregon's Death with Dignity Act and the resolution before APHA was based largely on management of suffering of adults who are terminally ill—“a fraction of dying persons confront a dying process so prolonged and marked by such extreme suffering that they determine hastening impending death is the best alternative” [7]. Yet in implementation of the Death with Dignity option in Oregon, less than a quarter of people who requested a prescription for lethal medication cited pain as the primary reason for their request. Instead, the reason cited by 9 of 10 persons was “loss of autonomy” and the inability to engage in activities that are enjoyable [6]. Physician and family reports are consistent— individuals want physician assistance to die in order to be in control of their body and of their death [8]. The functional limitations and dependence on others are regarded as so intolerable, that some believe they would rather die than experience such lack of bodily control. Yet many people with disabilities live every day of their lives with functional limitations that require dependence on others for personal assistance, and many do so while experiencing a good quality of life [9].

The slippery slope and other arguments 

An activity I engaged in was to review the arguments against the resolution and examine the research support relating to each argument. This catalogue of concerns was compiled from previous testimony before various groups, solicited input from the Disability Section members, and comments from disability organizations [3], [10]. Arguments could be grouped into several broad categories:

Arguments on the basis of “the slippery slope” often seem weak. They allow that the situation isn't obviously harmful yet but that, because it might become sufficiently harmful, actions need to be taken to guard against that eventuality. In the case of aid in dying, what was revealed were broadly held perceptions that life with severe disability was not worth living. The arguments of at least some proponents of assisted dying were based in the presumption that life without autonomy was not worth living and, therefore, that society should sanction the right to end one's life under such circumstances. This was evidenced when the resolution was debated by the APHA Governing Council in 2007; one councilor expressed his confusion and asked for clarification on the position of the Disability Section—he indicated that he had presumed the Disability Section was sponsoring the resolution.

Undue burden on people with disabilities 

As noted by an Oregon public health official, the Death with Dignity Act was not initiated by public health—it came to public health. Other writers have advocated that professional organizations take a position of studied neutrality on this issue [14]. In 2001, Kass [15] introduced an ethical framework for considering public health actions that I believe should have been applied to the aid in dying policy resolution when it came before APHA. A question to be answered within the Kass framework is, “Does any one group bear a disproportionate share of the burden of this policy's implementation?” I came to believe that the answer is affirmative; that persons with significant disabilities are unduly harmed by the values that such a measure endorses. Because aid in dying is used primarily to address loss of autonomy and not pain management, and because proponents argue that severe disability should warrant the right to end their life, this suggests a devaluing of a life lived with significant functional limitations.

Policies and laws that support the legal right to die under conditions of functional dependence reflect a form of discrimination—“ableism.” If society endorses the right of a person to seek physician assistance to end his or her life because of increasing loss of functional autonomy, what does that say about how our society values the lives of people who live with comparable limitations every day of their lives for years on end? It begs the question whether there is any other group, based on poverty or race or gender, to whom we would say, “If your life comes to this, we support you in ending your life”? It seemed that was the very issue being debated. It raised questions about the implications for investing in improved health care access or personal assistance supports for persons who are dependent on others for their basic care. One member of the APHA Disability Section who uses a wheelchair summarized this aptly: “I'd like to have the option of physician-assisted dying for myself. But because that position risks devaluing the life that people like me have, I have to oppose it.”