Project Administrator, Author at Protection of Conscience Project Library

Medical Assistance in Dying at a paediatric hospital

Carey DeMichelis, Randi Zlotnik Shaul, Adam Rapoport

Abstract
This article explores the ethical challenges of providing Medical Assistance in Dying (MAID) in a paediatric setting. More specifically, we focus on the theoretical questions that came to light when we were asked to develop a policy for responding to MAID requests at our tertiary paediatric institution. We illuminate a central point of conceptual confusion about the nature of MAID that emerges at the level of practice, and explore the various entailments for clinicians and patients that would flow from different understandings. Finally, we consider the ethical challenges of building policy on what is still an extremely controversial social practice. While MAID is currently available to capable patients in Canada who are 18 years or older—a small but important subsection of the population our hospital serves—we write our policy with an eye to the near future when capable young people may gain access to MAID. We propose that an opportunity exists for MAID-providing institutions to reduce social stigma surrounding this practice, but not without potentially serious consequences for practitioners and institutions themselves. Thus, this paper is intended as a road map through the still-emerging legal and ethical landscape of paediatric MAID. We offer a view of the roads taken and considered along the way, and our justifications for travelling the paths we chose. By providing a record of our in-progress thinking, we hope to stimulate wider discussion about the issues and questions encountered in this work.

DeMichelis C, Zlotnik Shaul R, Rapoport A. Medical Assistance in Dying at a paediatric hospital. J Med Ethics 2019;45:60-67.

Reasons for requesting medical assistance in dying

Ellen Wiebe, Jessica Shaw, Stefanie Green, Konia Trouton, Michaela Kelly

Abstract
Objective To review the charts of people who requested medical assistance in dying (MAID) to examine their reasons for the request.

Design
Retrospective chart survey.

Setting
British Columbia.

Participants
Patients who requested an assisted death and were assessed by 1 of 6 physicians in British Columbia during 2016.

Main outcome measures
Patients’ diagnoses and reasons for requesting MAID.

Results
Data were collected from 250 assessments for MAID: 112 of the patients had assisted deaths, 11 had natural deaths, 35 were assessed as not eligible for MAID, and most of the rest were not ready. For people who had assisted deaths, disease-related symptoms were given as the first or second most important reason for requesting assisted death by 67 people (59.8%), while 59 (52.7%) gave loss of autonomy, 55 (49.1%) gave loss of ability to enjoy activities, and 27 (24.1%) gave fear of future suffering. People who were assessed as eligible but who had not received assisted deaths were more likely to list fear of future suffering (33.7% vs 7.1%) and less likely to list disease-related symptoms (17.4% vs 40.2%) than those who received MAID were. There was a difference in reasons for MAID given by people with different diagnoses; disease-related symptoms were given as the most important reason by 39.0% of patients with malignancies, 6.8% of patients with neurological diseases, and 28.9% of patients with end-organ failure. Loss of autonomy was given as the most important reason by 16.0% of patients with malignancies, 36.4% of patients with neurological diseases, and 23.7% of patients with end-organ failure.

Conclusion
This study shows that the reasons patients give for requesting an assisted death are similar to those reported in other jurisdictions with similar laws, but in different proportions. Loss of autonomy and loss of ability to enjoy activities were less common reasons among patients in this study compared with other jurisdictions. This might be related to the method of data collection, as in this study, the patients’ reasons were recorded by physicians.

Wiebe E, Shaw J, Green S, Trouton K, Kelly M. Reasons for requesting medical assistance in dying. Can Fam Physician. 2018 Sep;64(674-679.

Is Euthanasia Psychiatric Treatment? The Struggle With Death on Request in the Netherlands

Damiaan Denys

Author Summary
A 42-year-old married woman with three children was referred to our department for treatment of treatment-resistant depression. Pharmacotherapy, psychotherapy, and ECT were unsuccessful. We applied deep brain stimulation, which was partially effective and reduced depressive symptoms by 30%, but the patient still suffered. During our struggle to find optimal deep brain stimulation parameters in the course of treatment, the patient requested that her general physician provide euthanasia. Following guidelines in the Netherlands, our team was consulted, but we disapproved because her suffering was not prospectless and there still were treatment options with deep brain stimulation. Although we had treated her intensively for 2 years, our advice was disregarded. Eight weeks later we received the obituary of the patient.

Denys D. Is Euthanasia Psychiatric Treatment? The Struggle With Death on Request in the Netherlands. Am J Psychiatry. 2018 Sep 1;175(9):822-823. doi: 10.1176/appi.ajp.2018.18060725.

Providing medical assistance in dying: Practice perspectives

Jessica Shaw, Ellen Wiebe, Amelia Nuhn, Sheila Holmes, Michaela Kelly, Alanna Just

Abstract
Objective: To explore the experiences of the first cohort of physicians to offer medical assistance in dying (MAID) in British Columbia. DESIGN: Qualitative study using semistructured, one-on-one interviews.

Setting: British Columbia.

Participants: Eight physicians who offered MAID in British Columbia in 2016. METHODS: The physicians were interviewed by telephone or by e-mail between 4 and 6 months after MAID was made legal in Canada, with follow-up in January 2017. Interviews were audiorecorded, transcribed, and analyzed through qualitative thematic analysis.

Main Findings: Participants believed that MAID was rewarding and satisfying work. They explained that some of the structural and emotional challenges related to providing MAID included the following: the refusal of faith-based institutions to provide information about MAID to patients, as well as their refusal to allow assessments or deaths to occur on site; having to deny MAID to patients who did not qualify for it; disagreements with colleagues who did not support the provision of MAID; dealing with the grief of family and friends who were present at the death; and feeling like they were always on call. While a few participants thought that the legislative restrictions of Bill C-14 were appropriate in the beginning when MAID was first available in Canada, most would like to see changes to the legislation to make it more aligned with the intent of the Carter decision, including broadening the eligibility criteria to include mature minors and people with advanced psychiatric diagnoses, having the ability to honour advance directives, and removing the requirement of death being in the reasonably foreseeable future for patients with grievous and irremediable conditions.

Conclusion: Physicians in this study explained that providing MAID is rewarding work; however, there are many challenges that complicate their ability to offer MAID to patients. The current MAID legislation in Canada should be updated to better serve the needs of patients.

Shaw J, Wiebe E, Nuhn A, Holmes S, Kelly M, Just A. Providing medical assistance in dying: Practice perspectives. Can Fam Physician. 2018 Sep;64(9):e394-e399.

On Avoiding Deep Dementia

Norman L Cantor

Abstract
Some people will confront Alzheimer’s with a measure of resignation, a determination to struggle against the progressive debilitation and to extract whatever comforts and benefits they can from their remaining existence. They are entitled to pursue that resolute path. For other people, like myself, protracted maintenance during progressive cognitive dysfunction and helplessness is an intolerably degrading prospect. The critical question for those of us seeking to avoid protracted dementia is how best to accomplish that objective. One strategy is to engineer one’s own death while still mentally competent to do so (even in the stage of mild dementia). If I were to use a preemptive strategy in the face of a dementia diagnosis, I would probably choose to stop eating and drinking, a process known as voluntarily stopping eating and drinking. An alternative tactic for avoiding prolonged dementia would be to allow oneself to decline into moderate dementia—thus losing capacity to perform self-deliverance or even to make serious medical decisions—but before getting to that point to provide advance instructions rejecting prospective life-sustaining medical interventions. These advance instructions would authorize palliative but not curative measures. My current personal instructions define the point of intolerable cognitive decline triggering medical nonintervention as “mental deterioration to a point when I can no longer read and understand written material such as a newspaper or financial records such as a checkbook.” These instructions dictate allowing my demise at a point of moderate dementia when I may not be perceptibly suffering, when I may still be getting some rudimentary satisfaction from my debilitated life, and when I no longer recall the preoccupation with personally intolerable indignity that motivated my instructions. Can I expect that my advance instructions will be implemented in those circumstances? Is it lawful, and is it moral for a surrogate decision-maker and associated caregivers to allow an uncomprehending, ostensibly content but demented individual to die? My analysis herein contends that it is not only lawful and moral but also legally required to implement clear, considered advance instructions even at a stage of moderate dementia.

Cantor NL. On Avoiding Deep Dementia. Hastings Cent. Rep. 2018 Aug 16;48(4):15-24.

What the Doctor Ordered: Balancing Religion and Patient Rights in U.S. Pharmacies

Rachel T Caudel

Extract
Conclusion
. . . A statute that requires pharmacies to select their own policies regarding contraceptives and sexual health medication, to publish that policy, and to be required to adhere to the stated policy, however, is a near perfect solution to the delicate balance of protected rights. With cooperation from physicians and compliance within the pharmacies, women will be able to access the pharmaceuticals prescribed to them without delay, hassle, misinformation, or shame. Women will be able to find a pharmacist who will allow them to exercise their choice to use or not to use contraceptives. Pharmacists, on the other hand, will more easily schedule their careers to line up with their moral and religious convictions. A pharmacist will easily be able to determine a pharmacy’s policy on sexual health medications and contraceptives and therefore more easily find employment with a pharmacy that shares his value system. An individualized sexual health medication policy, when accompanied by a directory program, policy publication and compliance supervision, is the best, and possibly only method of insuring all rights at stake are protected.

Caudel RT. What the Doctor Ordered: Balancing Religion and Patient Rights in U.S. Pharmacies. Ky Law J. 2018 Aug;97(3):521-539.

Physician-Assisted Suicide: Why Neutrality by Organized Medicine Is Neither Neutral Nor Appropriate

Daniel P. Sulmasy, Ilora Finlay, Faith Fitzgerald, Kathleen Foley, Richard Payne, Mark Siegler

Abstract
It has been proposed that medical organizations adopt neutrality with respect to physician-assisted suicide (PAS), given that the practice is legal in some jurisdictions and that membership is divided. We review developments in end-of-life care and the role of medical organizations with respect to the legalization of PAS since the 1990s. We argue that moving from opposition to neutrality is not ethically neutral, but a substantive shift from prohibited to optional. We argue that medical organizations already oppose many practices that are legal in many jurisdictions, and that unanimity among membership has not been required for any other clinical or ethical policy positions. Moreover, on an issue so central to the meaning of medical professionalism, it seems important for organized medicine to take a stand. We subsequently review the arguments in favor of PAS (arguments from autonomy and mercy, and against the distinction between killing and allowing to die (K/ATD)) and the arguments against legalization (the limits of autonomy, effects on the patient-physician relationship, the meaning of healing, the validity of the K/ATD distinction, the social nature of suicide, the availability of alternatives, the propensity for incremental extension, and the meaning of control). We conclude that organized medicine should continue its opposition to PAS.

Sulmasy DP, Finlay I, Fitzgerald F, Foley K, Payne R, Siegler M. Physician-Assisted Suicide: Why Neutrality by Organized Medicine Is Neither Neutral Nor Appropriate. J Gen Intern Med. 2018 Aug;33(8):1394-1399. doi: 10.1007/s11606-018-4424-8. Epub 2018 May 2.

Seeking to square the circle: A sustainable conscientious objection in reproductive healthcare

Emmanuelle Bribosia, Isabelle Rorive

Abstract
While the right to abortion is not spelled out as such in the international or regional human rights treaties, recent developments strongly support the view that a right to safe and legal abortion is a woman’s human right. A sustainable model of conscientious objection in reproductive healthcare must take into account the human rights developments concerning induced abortion. For the past hundred years, conscientious objection has been used almost exclusively in the context of refusal to perform compulsory military service. There are major difficulties in trying to transpose the debate surrounding conscientious objection to the realm of reproductive health. The wider context of conscience claims raised after the legalisation of same-sex unions is even more disturbing. It shows the detrimental effect hat accommodation policies could have on the full operation of non-discrimination law. Recent supranational and national cases show that the recognition of conscientious objection in reproductive healthcare is hardly sustainable on the ground. A snowball effect seems inevitable. And even well-defined legal safeguards are failing. This leads to wide discriminatory treatment based on gender, territorial status, low social condition and ethnicity. This also leads to the failure to recognise the dignitary harm to women and the perpetuation of social prejudice and structural inequality which result from this approach. In other words, designing, implementing and monitoring a strictly regulated conscience clause in reproductive healthcare resembles an effort to square the circle. Something always falls by the wayside, and the ‘something’ is no less than women’s human rights.

Bribosia E, Rorive I. Seeking to square the circle: A sustainable conscientious objection in reproductive healthcare. In Chapter 15, Mancini S, Rosenfeld M, editors. The Conscience Wars: Rethinking the Balance between Religion, Identity, and Equality, Cambridge: University Press, 2018 (392-413).

The Right of Religious Hospitals to Refuse Physician-assisted Suicide

Barry W Bussey

Abstract
The Supreme Court of Canada’s decision to allow medical assistance in dying (MAiD) has created a crisis of conscience for religious hospitals that refuse MAiD based on religious beliefs and conscience. This paper argues that when the law is revised concerning fundamental human life issues (FHLI), such as assisted suicide, liberal democracies must tolerate religious communities and institutions that refuse to accept the law’s revision. This toleration for religious belief and practice is predicated on the idea that the religious practice at issue remains legal and forms part of the religious community’s moral framework to which the state remains neutral. A refusal to tolerate the religious position is a rejection of the collective wisdom of liberal democratic thought that has emphasized religious individual and, by extension, religious institutional freedom. The Christian hospital, having been around for millennia, forms a necessary part of civil society. Robert Putnam’s research on the importance of religion to civic society is used to make the argument that society as a whole benefits from the norm of reciprocity, (“I’ll do this for you now, with the expectation that you (or perhaps someone else) will return the favour”). As the state continues to allow the religious community to have “its” hospital, the community, as a whole, will continue to maintain a high level of trust toward the state. Radical positions from our historical norms require thoughtful reflection of their presuppositions. It would serve us well to maintain a humble appreciation of our cultural heritage even when we think we are right in our newfound positions on FHLI.

Bussey BW. The Right of Religious Hospitals to Refuse Physician-assisted Suicide. Supreme Court Law Review. 2018;189-223.

Access to aid-in-dying in the United States: Shifting the debate from rights to justice

Mara Buchbinder

Author Summary
Much of the literature on aid-in-dying (AID) has drawn heavily on rights-based ethical and legal frameworks that emphasize patients’ rights of self-determination in end-of-life decision-making. Less attention has focused on how terminally ill people actually experience such putative rights once they are legally authorized. This analytic essay draws on findings from the Vermont Study on Aid-in-Dying, an ethnographic study of the implementation of AID in Vermont (2015-2017). First, I show that terminally ill people can face a range of barriers to accessing AID in permissive jurisdictions, and that access to AID is mediated by various inequalities endemic to US health care, as well as some that are unique to AID. I then build on these findings to examine the utility of the concept of justice for public health scholarship on AID. By integrating empirical, ethical, and policy analysis, I reframe rights-based frameworks that emphasize the role of individual choice and decision-making at the end of life. In doing so, I draw attention to health care justice as a neglected issue in public health perspectives on AID.

Buchbinder M. Access to aid-in-dying in the United States: Shifting the debate from rights to justice. Am J Public Health. 2018;108(6):754-759.