Aid in Dying: a triumph of choice over care?

by: Elizabeth Dzeng (@LizDzeng)

On September 11, 2015, the legislative bodies of California and the United Kingdom were both faced with the decision to legalize physician assisted dying. Both bills were remarkably similar and based on the Oregon Death with Dignity bill. However, UK lawmakers decisively rejected their bill while their California counterparts approved the End of Life Option Act.

Post-hoc analysis of why the bill failed in the UK and why it succeeded in California point to the usual arguments; concerns about the protection of vulnerable populations and fears of a slippery slope on one side and calls for control and dignity to the end on the other. However, I believe that the different paths taken this day might reflect the different philosophies these countries hold regarding the primacy of choice and autonomy.

That it passed in California might reflect America’s sociopolitical tendencies towards individual rights and autonomy, and the nation’s mistrust of institutions such as the government and medicine, in favor of personal control over one’s own destiny. This is evident in America’s health care system and in particular end of life decision-making, where cultures and policies tend to idealize choice and autonomy. For example, while local variations undoubtedly exist, hospital policies and cultures regarding Do Not Resuscitate decision-making commonly prioritize autonomy.

In particular, New York State law mandates that a physician must perform resuscitation if the patient or surrogate requests it regardless of whether they think it would be clinically appropriate (Spitzer, 2003). It has been shown that institutions that prioritize autonomy over best interest promote cultures where physicians more frequently fail to guide patients by making recommendations (Dzeng, 2015). Rather than empowering patients, a discourse of choice unintentionally allows physicians to derogate from their responsibility to educate and guide and threatens to abandon patients at their most vulnerable moment.

Over the past few years, there has been a shift towards greater awareness that Americans are not dying well. The popular press is rife with stories of helplessness in the face of technologically intense, aggressive care that dehumanizes the last stage of the natural life process (Gawande, 2014). The death with dignity movement reflects this desire to regain control in the face of bewildering choices and the helplessness that comes with being asked to make choices with implications for which they are not fully informed.

However, adding this choice to end one’s life might further exacerbate this overwhelming list of options. It potentially does patients a tragic dis-service by giving them the option to end their lives as a poor alternative to providing the palliative care services and guidance that should have been provided. We have already seen in Oregon and the Netherlands doctor shopping for physicians willing to prescribe medications that will cause death (Snijdewind, 2015). This further disrupts the continuity of care that is so essential for a trusting relationship.

Maybe rather than focusing on this discourse of choice, we should instead shift our priorities towards creating a culture of care. To fix this broken system, we need to focus on humanizing the end of life and embrace the spiritual and psychosocial aspects of dying, strengthen clinical palliative care services, and work with the patient to promote genuine understanding of the choices that will realistically accomplish the patients’ goals and values.

Perhaps lawmakers in the UK, a health care system that has traditionally focused on best interest decision making (UK Mental Capacity Act, 2005), recognized that the ability to choose aid in dying was more deleterious than focusing on providing clinical and psychosocial support as a means to a good death. Indeed, a recent Economist Intelligence Unit report ranked the UK number one in the world for Quality of Death. The UK has a rich history of care of the dying, as exemplified by Dame Cicely Saunders and her creation of the hospice movement. Temel’s landmark study on the benefits of early palliative care was greeted with excitement and surprise by the American community, and yet my British colleagues found the hype confusing since early palliative care through their National Health Service (NHS) had always been the standard (Temel, 2010).

While the debate on aid in dying continues nationally, the time for divisive debate in California needs to move instead towards crafting a moral response to the Act. Instead, those who oppose and supported the bill must come together as united advocates whose ultimate goals have always been to improve quality of death. It would be tragic if patients felt they need to resort to aid in dying because they were not provided with adequate palliative care support. Health care practitioners must recognize that there is oftentimes underlying meaning behind their requests and ensure that the patient has their palliative care needs addressed.

California must use this as a catalyst to redouble efforts to improve palliative care in California and the US more broadly. Practitioners will need to develop their individual and institutional responses on how best to provide safe, ethical care that respects both the patient and their choices. The CAPC Report Card gave California a “B” score, signaling the need to focus on improving support. The low frequency of requests and enactments of aid in dying in Oregon and Washington have been in part due to their efforts to improve palliative care services and training in response to their Death with Dignity Act (Lee, 1996).

Dignity is a term that has been embraced by advocates of aid in dying, but perhaps the way to enable a dignified death lies not merely in choice, but through fostering a humanistic, supportive, care based palliative care infrastructure.

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Footnote: This is a series of posts this week on Physician Assisted Death in recognition that California’s physician-assisted dying law, ABX2-15 (AB-15), the End of Life Option Act, takes effect on June 9, 2016.