Can Growing Popular Support for Physician-Assisted Death Motivate Organized Medicine to Improve End-of-Life Care?
Can Growing Popular Support for Physician-Assisted Death Motivate Organized Medicine to Improve End-of-Life Care?
Elizabeth Dzeng liz.dzeng@ucsf 0 1
0 Department of Social and Behavioral Science, Sociology Program, University of California, San Francisco , San Francisco, CA , USA
1 Department of Medicine, Division of Palliative Medicine, University of California, San Francisco , San Francisco, CA , USA
M last several decades from a technological, ethical, and
odern medicine has experienced tectonic shifts over the
sociological perspective, particularly around care at the end of
life. The confluence of these transformations has shaped the
public discourse around the way we die and has given rise to
the debates we see today surrounding physician-assisted death
(PAD). Through personal stories and stories in the popular
press regarding overly aggressive treatments at the end of life,
some Americans are fearful that they too might die what is
often portrayed as a dehumanizing death. The increasing
momentum towards legalization of PAD is in part a reaction
to this public perception embedded in a clinical reality and
motivated by a desire to regain personal control. This, it can be
assumed, would counteract a perceived helplessness to resist
the overwhelming array of choices within a system that
defaults to aggressive care at the end of life.
In this issue of the Journal of General Internal Medicine,
Sulmasy and colleagues lay out an argument for why
neutrality on PAD by professional medical organizations is neither
appropriate nor neutral1. They stress that neither the fact that
the membership disagree on the moral acceptability of PAD
nor that physicians in seven states (most recently Hawaii) and
the District of Columbia are permitted to prescribe the lethal
drug requires a position of neutrality. They argue that
neutrality is not neutral as it Bdeclares a policy no longer morally
unacceptable.^ The authors base their arguments against PAD
on the Bmeaning of medical practice, the importance of the
physician-patient relationship, and respect for the common
good.^ They contend that autonomy alone does not justify
PAD, as it must be weighed by the other ethical principles such
as justice, beneficence (best interest), and non-maleficence
(first do no harm). They also argue that PAD is not a healing
act and can also cause further harm by jeopardizing the trust
inherent in the physician-patient relationship.
Sulmasy et al. highlight PAD’s socio-political
implications and the effects of legalization on public opinion of
PAD. They argue that allowing PAD can send social
messages, including one that devalues lives by suggesting
that there are certain states that are not worth living.
Legalizing PAD could slowly change social norms that
might encourage suicide contagion, normalize PAD
leading to an incremental extension of PAD, and further
perpetuate the image of pain and suffering as an inevitable
part of death.
The focus on the implications of PAD on normative
thinking and public opinion is important and speaks to the social
complexity of this issue. While some might argue that PAD is
appropriate for certain individuals (i.e., a well-informed,
empowered patient in a trusting relationship with a physician
who is willing to prescribe), one cannot ignore the aggregate
effects of individual actions on broader social perceptions.
This I believe is where the greatest danger lies in the
legalization of PAD. There are additional social and historical forces
that might explain why PAD has risen to the forefront of public
discourse today. By exploring the root causes of the movement
to legalize PAD, we can better understand and address the
problems inherent in end-of-life care that contributed to this
groundswell of support for PAD.
Life-sustaining technologies such as mechanical ventilation
and extracorporeal membranous oxygenation (ECMO) as well
as powerful new chemotherapy and biologic agents mean that
attempting to delay death at all costs is becoming an
increasingly viable option. Sometimes forgotten in this quest is the
permission to prioritize quality of life over longevity. A default
of aggressive care in the hospital, financial incentives to
overtreat, social pressures to be a Bfighter,^ and the inherent
emotional trauma and fears of death, further encourage a
culture of care that prioritizes high-intensity care at the
expense of humanistic care.
As a result, despite efforts to improve palliative care and
advance care planning, intensity of end-of-life care continues
to increase in America. For example, rates of ICU admissions
and life-sustaining treatments continue to rise among older
adults2 despite evidence suggesting that life-sustaining
therapies in the ICU may not always be beneficial and might even
be at times harmful.3,4 Overly aggressive treatments further
cause harm by reducing quality of life near death and
exacerbating caregiver bereavement.5,6 When burdensome
end-oflife care occurs, it is difficult to maintain that non-maleficence
has been honored and that medicine is fulfilling its
fundamental calling to provide person-centered, empathetic care.
The challenges and suffering inherent in a
treatment-at-allcosts approach has been increasingly highlighted in the popular
press through writing by Atul Gawande7, Katy Butler8, and
others. It should thus not be a surprising consequence that the
public increasingly feels a need to empower themselves against
prolonged suffering caused by this culture of overly aggressive
care. The increasing acceptance of PAD I suspect, in part lies
with an insufficient emphasis on non-maleficence in the drive
to sustain life in terminal conditions when treatments become
burdensome. The argument that PAD is morally unacceptable
because physicians have sworn an oath to do no harm and to
first and foremost, heal, becomes less compelling.
These challenges occur on a backdrop of an American
cultural philosophy that prioritizes individual rights,
autonomy, and the primacy of control over one’s own destiny. While
America was founded on the tenet of rugged individualism ,
significant shifts in the physician-patient relationship from
paternalism to autonomy have only occurred over the past
several decades. At the core of this transformation was the
broader movement towards the neoliberal values of
individualism and the supremacy of competitive market forces in the
1980s. This laid the foundation for a shift from what Talcott
Parsons (1950) described as the Bsick role^10 where patients
faithfully followed their doctor’s instructions in order to get
better, towards one that emphasized an autonomous patient
consumer who could choose doctors and treatments based on
their personal preferences.
While a shift away from physician paternalism was
necessary, some worry that the pendulum has swung too far, and
clinicians risk abandoning patients to make their own
decisions. In a qualitative interview study of physicians, I found
that hospital cultures that prioritized autonomy encouraged
physician trainees to withhold recommendations because they
feared that it would hinder patient autonomy11. Rather than
empowering patients, a dogmatic ideology of autonomy and
choice instead withdraws physicians from their responsibility
to guide and abandons patients at their most vulnerable
moment. I believe this lack of guidance contributes both to the
trends towards overly aggressive end-of-life care and to the
desire to exercise PAD to mitigate helplessness when faced
with overwhelming choice.
However, legalizing PAD instead exacerbates the problem
of choice at the end of life without addressing the underlying
problem of overly aggressive care and insufficient guidance
and access to palliative care options. Indeed, legalization of
PAD in some states has only increased confusion, as hospitals
and clinicians struggle themselves to understand the
implications of the law. Disruptions in continuity of care for seekers of
PAD are a frequent challenge when their physicians are
unwilling to prescribe the lethal drug. Furthermore, legalization
of PAD sends a social message that the only way to fix the
structural problems in end-of-life care is to take matters into
one’s own hands and end one’s own life.
In order to improve end-of-life care, the medical profession
and organized medicine must understand the socio-cultural
context from which support for PAD arose. In states where
PAD has been legalized, refusal to accept this new reality and
to craft an ethical response threatens to further erode the
physician-patient relationship12 and abandon patients who
are seeking professional guidance and support at the end of
life. This includes among others, establishing organizational
priorities focused on palliative and end-of-life care, addressing
clinician burnout which hinders clinicians’ abilities to provide
compassionate care, and re-calibrating the culture of medicine
away from a consumerist mindset back towards a more
humanistic profession that truly seeks to heal.
This editorial builds on ideas the author first described in a
Geripal.com blog entitled BAid in Dying: a triumph of choice over
care?^, published on June 7, 2016.
The author would like to thank J. Randall Curtis, MD, MPH (University
of Washington), Laura Petrillo, MD (Harvard University), and Tobias
Häusermann, PhD (University of California, San Francisco) for helpful
feedback on drafts of this editorial.
Funding/Support: Research reported in this publication was
supported by the National Center for Advancing Translational Sciences of the
NIH under Award Number KL2TR001870. Atlantic Fellowship for
Equity in Brain Health, Global Brain Health Institute, UCSF. National
Palliative Care Research Center Junior Investigator Career
Development Award. The content is solely the responsibility of the authors
and does not necessarily represent the official views of the NIH.
Compliance with Ethical Standards:
Conflict of Interest: The author has completed and submitted the
ICMJE Form for Disclosure of Potential Conflicts of Interest. There are no
disclosures or conflicts of interest to report.
1. Sulmasy DP , Finlay I , Fitzgerald F , Foley K , Payne R , Siegler M. PhysicianAssisted Suicide: Why Neutrality by Organized Medicine is Neither Neutral nor Appropriate . J Gen Intern Med . 2018 . https://doi.org/10. 1007/s11606-018-4424-8
2. Teno JM , Gozalo PL , Bynum JPW , et al. Change in End-of-Life Care for Medicare Beneficiaries: Site of Death, Place of Care, and Health Care Transitions in 2000 , 2005 , and 2009 . J Am Med Assoc . 2013 ; 309 ( 5 ): 470 - 477 .
3 . Chang D , Shapiro M. Association Between Intensive Care Unit Utilization During Hospitalization and Costs, Use of Invasive Procedures, and Mortality . JAMA Intern Med . 2016 ; 176 ( 10 ): 1492 - 1499 . https://doi.org/ 10.1001/jamainternmed. 2016 . 4298 .
4. Guidet B , Leblanc G , Simon T , et al. Mortality Among Critically Ill Elderly Patients in France. J Am Med Assoc . 2017 : 1 - 10 . https://doi.org/10. 1001/jama. 2017 . 13889 .
5. Prigerson H , Bao Y , Shah M , et al. Chemotherapy Use, Performance Status, and Quality of Life at the End of Life . JAMA Oncol . 2015 ; 1 ( 6 ): 778 - 784 . https://doi.org/10.1001/jamaoncol. 2015 . 2378 .
6. Wright AA , Ray A , Mack JW , et al. Associations Between End-of-Life Discussions, Patient Mental Health, Medical Care Near Death, and C a r e g i v e r B e r e a v e m e n t A d j u s t m e n t . J A m M e d A s s o c . 2008 ; 300 ( 14 ): 1665 - 1673 .
7. Gawande A. Letting Go: What should medicine do when it can't save your life . New Yorker . 2010 . http://www.newyorker.com/reporting/2010/08/ 02/100802fa_fact_gawande.
Dzeng E , Colaianni A , Roland M , et al. Influence of Institutional Culture and Policies on Do-Not-Resuscitate Decision Making at the End of Life . JAMA Intern Med . 2015 ; 175 ( 5 ): 812 - 819 . https://doi.org/10.1001/ jamainternmed. 2015 . 0295 .
Seipel T. UCSF sued for refusing to help woman die. The Mercury News . https://www.mercurynews.com/ 2017 /07/17/family-sues -ucsf-foragreeing-then-refusing-to-help-woman-die/ . Published July 17 , 2017 .