Tuesday, June 7, 2016

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.


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.


Paul Rousseau said...

Can you please provide the full reference by Snijdewind where patients allegedly doctor shop in Oregon? That's a strong statement.

Liz Dzeng said...

Snijdewind, 2015: http://archinte.jamanetwork.com/article.aspx?articleid=2426428

Diane E. Meier said...

Hi Elizabeth- thank you for this superb analysis. I think the meta-message of public policy enabling aid-in-dying is an explicit endorsement of the "You're on your own" thematic threads in American society and manifests a societal acceptance of the very low expectations Americans have come to have on our health care system. It's as if we (policy makers and the medical profession) are saying- "you're right to be afraid, members of the public- we can't address your suffering, so we're going to make it easier for you to end your life." It reinforces the meme that we can't rely on one another for care and support, that dependency and need for care is shameful, and that the medical profession has no role/responsibility in alleviating misery. This is why I think palliative care professionals should be outspoken in their opposition to such legislation, and instead be loudly calling for a culture (and a health system) of care.

Ruth Hill said...

Very well said.

Gregg VandeKieft said...

Thanks for a thoughtful and thought-provoking post, Liz.

One thing keeps nagging at me though: is this a false dichotomy? That is, need it be either/or, or can it both/and? Practicing in WA for an employer that opted out of our Death With Dignity Act (so as a non-participating physician), I've had many conversations with patients who inquire about physician-assisted dying. Very few have followed through, but those who did received excellent palliative care and all were on hospice. They made an informed choice, based on their values, goals, and preferences; it wasn't about inadequate symptom control, system failures, or baseless fears. And my anecdotal experience mirrors extensive data from WA and OR - the abuses and concerns raised in opposition to the laws have not materialized in a tangible way. CA is certainly more diverse than OR or WA and has a much larger population, so things may play out differently, so I don't assume the WA and OR experience will be exactly replicated in CA. Perceptions may also differ since the OR and WA laws were the result of citizens initiatives approved by a substantial majority of voters, rather than a legislative act like CA's End-of-Life Options Act.

The availability of palliative care remains my major concern - allowing PAD to anyone without access to excellent palliative care is very problematic. We must also be cognizant of the optics as palliative care professionals - after working so hard to dissociate our discipline from "death panels" misperceptions, we should be wary about how participation in PAD may affect our "brand."

Of course, the law is upon you now in CA, regardless of our philosophical, political, or moral viewpoints about its rightness or wrongness. It seems the best next steps will be advocacy for excellent palliative care for all Californians, and training physicians at the point of care how to respond to inquiries about PAD in a manner that opens up the sort of rich dialogue that fosters the best care possible. The conversations that follow these inquiries are almost always profound, and the overwhelming majority do not culminate in PAD, so we need to focus on how to help all those who inquire.

Thanks again for your post!

Paul Rousseau said...

Well said Gregg.

Liz Dzeng said...

Thank you very much, Diane and Gregg for your very thoughtful comments, and for engaging in this dialogue. The experiences Americans encounter in health care are diverse - influenced by socioeconomic status, geography, health literacy, race, gender, ethnicity, etc. I am very glad to hear that the patients you've encountered have had excellent palliative care and that the majority of them have had the resources and ability to make informed decisions supported by palliative care. This is no doubt due to the excellent service you and your institution have provided.

I agree that for those who have access to palliative care and have made that informed choice, it is appropriate and the choice is one that I completely support. I believe that there are aspects to the dying process such as a perceived lack of control and changes in personhood that can not always be addressed adequately, and for those people, PAD might be the right choice. However, the law has been applied to all Californians, and not just those who were privileged. I am worried about giving choice over care to those who aren't so lucky.

I also wrote this blog from a more societal rather than individual perspective - that the rallying cry for choice comes, as Diane described, from a rather neoliberal attitude that choice is the only way to resist the tide of overly aggressive care at the end of life. Which I think only puts a bandaid on that larger problem.

I completely agree with you, Gregg, that ensuring availability of palliative care is integral to a moral response. I recognize and understand palliative care's hesitancy to associate with PAD. However, I feel that to do so would be a disservice to those who are facing an uncertain and scary future as they near the end of their life.

I have mixed feelings about the law, but as we've all stated, the law has passed, and so I believe that this is the time to think about the patients who are contemplating PAD and in need of palliative care services and support rather than as Gregg say, how PAD might affect the "brand."

We have two populations that now have access to PAD. Those with access to palliative care and those who don't. As Gregg points out, choice and care doesn't need to conflict for those with access to palliative care. For those without access, I worry that they have been given an unempowered and potentially unethical choice. I believe now is the time to put the patient first and provide the care and guidance that so defines the palliative care profession, so that the great numbers in the latter category can move into the former.