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.
Charles L Sprung, Margaret A Somerville, Lukas Radbruch, Nathalie Steiner Collet, Gunnar Duttge, Jefferson P Piva, Massimo Antonelli, Daniel P Sulmasy, Willem Lemmens, E Wesley Ely
Journal of Palliative Care
Abstract Medical professional societies have traditionally opposed physician-assisted suicide and euthanasia (PAS-E), but this opposition may be shifting. We present 5 reasons why physicians shouldn’t be involved in PAS-E.
1. Slippery slopes: There is evidence that safeguards in the Netherlands and Belgium are ineffective and violated, including administering lethal drugs without patient consent, absence of terminal illness, untreated psychiatric diagnoses, and nonreporting;
2. Lack of self-determination: Psychological and social motives characterize requests for PAS-E more than physical symptoms or rational choices; many requests disappear with improved symptom control and psychological support;
3. Inadequate palliative care: Better palliative care makes most patients physically comfortable. Many individuals requesting PAS-E don’t want to die but to escape their suffering. Adequate treatment for depression and pain decreases the desire for death;
4. Medical professionalism: PAS-E transgresses the inviolable rule that physicians heal and palliate suffering but never intentionally inflict death;
5. Differences between means and ends: Proeuthanasia advocates look to the ends (the patient’s death) and say the ends justify the means; opponents disagree and believe that killing patients to relieve suffering is different from allowing natural death and is not acceptable.
Conclusions: Physicians have a duty to eliminate pain and suffering, not the person with the pain and suffering. Solutions for suffering lie in improving palliative care and social conditions and addressing the reasons for PAS-E requests. They should not include changing medical practice to allow PAS-E.
Abstract Many contributors to debates about professional conscience assume a basic, pre-professional right of conscientious refusal and proceed to address how to ‘balance’ this right against other goods. Here I argue that opponents of a right of conscientious refusal concede too much in assuming such a right, overlooking that the professions in which conscientious refusal is invoked nearly always operate as public cartels, enjoying various economic benefits, including protection from competition, made possible by governments exercising powers of coercion, regulation, and taxation. To acknowledge a right of conscientious refusal is to license professionals to disrespect the profession’s clients, in opposition to liberal ideals of neutrality, and to engage in moral paternalism toward them; to permit them to violate duties of reciprocity they incur by virtue of being members of public cartels; and to compel those clients to provide material support for conceptions of the good they themselves reject. However, so long as (a) a public cartel discharges its obligations to distribute the socially important goods they have are uniquely authorized to provide without undue burden to its clientele, and (b) conscientious refusal has the assent of other members of a profession, individual professionals’ claims of conscience can be accommodated.
Valerie Fleming Lucy Frith, Ans Luyben, Beate Ramsayer
BMC Medical Ethics
Abstract Background: Freedom of conscience is a core element of human rights respected by most European countries. It allows abortion through the inclusion of a conscience clause, which permits opting out of providing such services. However, the grounds for invoking conscientious objection lack clarity. Our aim in this paper is to take a step in this direction by carrying out a systematic review of reasons by midwives and nurses for declining, on conscience grounds, to participate in abortion.
Method: We conducted a systematic review of ethical arguments asking, “What reasons have been reported in the argument based literature for or against conscientious objection to abortion provision by nurses or midwives?” We particularly wanted to identify any discussion of the responsibilities of midwives and nurses in this area. Search terms were conscientious objection and abortion or termination and nurse or midwife or midwives or physicians or doctors or medics within the dates 2000–2016 on: HEIN legal, Medline, CINAHL, Psychinfo, Academic Search Complete, Web of Science including publications in English, German and Dutch. Final articles were subjected to a rigorous analysis, coding and classifying each line into reason mentions, narrow and broad reasons for or against conscientious objection.
Results: Of an initial 1085 articles, 10 were included. We identified 23 broad reasons, containing 116narrow reasons and 269 reason mentions. Eighty one (81) narrow reasons argued in favour of and 35 against conscientious objection. Using predetermined categories of moral, practical, religious or legal reasons, “moral reasons” contained the largest number of narrow reasons (n = 58). The reasons and their associated mentions in this category outnumber those in the sum of the other three categories.
Conclusions: We identified no absolute argument either for or against conscientious objection by midwives or nurses. An invisibility of midwives and nurses exists in the whole debate concerning conscientious objection reflecting a gap between literature and practice, as it is they whom WHO recommend as providers of this service. While the arguments in the literature emphasize the need for provision of conscientious objection, a balanced debate is necessary in this field, which includes all relevant health professionals.
Abstract Novel assisted reproductive technologies (ART) are poised to present our society with strange new ethical questions, such as whether lesbian, gay, bisexual, and transgender (LGBT) couples should be allowed to produce children biologically related to both parents, or whether trans-women who want to experience childbirth should be allowed to receive uterine transplants. Clinicians opposed to offering such technologies to LGBT couples on moral grounds are likely to seek legal shelter through the conscience clauses enshrined in U.S. law. This paper begins by briefly discussing some novel ART on the horizon and noting that it is unclear whether current conscience clauses will permit fertility clinics to deny such services to LGBT individuals. A compromise approach to conscience is any view that sees the value of respecting conscience claims within limits. I describe and critique the constraints proposed in the recent work of Wicclair, NeJaime and Siegel as ultimately begging the question. My purpose is to strengthen their arguments by suggesting that in the controversial situations that elicit claims of conscience, bioethicists should engage with the metaphysical claims in play. I argue that conscience claims against LGBT individuals ought to be constrained because the underlying metaphysic—that God has decreed the LGBT lifestyle to be sinful—is highly implausible from the perspective of a naturalized metaphysic, which ought to be the lens through which we evaluate conscience claims.
Abstract Background: Hans Asperger (1906–1980) first designated a group of children with distinct psychological characteristics as ‘autistic psychopaths’ in 1938, several years before Leo Kanner’s famous 1943 paper on autism. In 1944, Asperger published a comprehensive study on the topic (submitted to Vienna University in 1942 as his postdoctoral thesis), which would only find international acknowledgement in the 1980s. From then on, the eponym ‘Asperger’s syndrome’ increasingly gained currency in recognition of his outstanding contribution to the conceptualization of the condition. At the time, the fact that Asperger had spent pivotal years of his career in Nazi Vienna caused some controversy regarding his potential ties to National Socialism and its race hygiene policies. Documentary evidence was scarce, however, and over time a narrative of Asperger as an active opponent of National Socialism took hold. The main goal of this paper is to re-evaluate this narrative, which is based to a large extent on statements made by Asperger himself and on a small segment of his published work.
Methods: Drawing on a vast array of contemporary publications and previously unexplored archival documents (including Asperger’s personnel files and the clinical assessments he wrote on his patients), this paper offers a critical examination of Asperger’s life, politics, and career before and during the Nazi period in Austria.
Results: Asperger managed to accommodate himself to the Nazi regime and was rewarded for his affirmations of loyalty with career opportunities. He joined several organizations affiliated with the NSDAP (although not the Nazi party itself), publicly legitimized race hygiene policies including forced sterilizations and, on several occasions, actively cooperated with the child ‘euthanasia’ program. The language he employed to diagnose his patients was often remarkably harsh (even in comparison with assessments written by the staff at Vienna’s notorious Spiegelgrund ‘euthanasia’ institution), belying the notion that he tried to protect the children under his care by embellishing their diagnoses.
Conclusion: The narrative of Asperger as a principled opponent of National Socialism and a courageous defender of his patients against Nazi ‘euthanasia’ and other race hygiene measures does not hold up in the face of the historical evidence. What emerges is a much more problematic role played by this pioneer of autism research. Future use of the eponym should reflect the troubling context of its origins in Nazi-era Vienna.
Extract January, the U.S. Department of Health and Human Services (HHS) announced the creation of its Conscience and Religious Freedom Division, explaining that it will allow HHS’s Office of Civil Rights to “more vigorously and effectively enforce existing laws protecting the rights of conscience and religious freedom” and will ensure that “no one is coerced into participating in activities that would violate their consciences, such as abortion, sterilization or assisted suicide.”1 Responses were as expected: religious conservatives hailed the new division as a needed intervention; public health and clinical leaders and advocates decried it, worrying about its impact on access to care and harm to patients.
HHS leaders’ comments to date suggest that they are uninterested in discrimination against health care providers whose consciences compel them to provide care, and uninterested in injuries to patients caused by care refusals. This framing makes conscience yet another issue dividing Americans, largely along partisan lines.
Extract We are writing to respond to Dr. Steven Bodley’s letter: “Just the Facts on Effective Referral.” . . . The College of Physicians and Surgeons of Ontario’s (CPSO’s) effective referral policy for MAiD does not go far enough in protecting the religious freedom of physicians. . . It is unfortunate that the CPSO does not acknowledge that the provision of an “indirect” referral still renders the referring physician complicit. . . . medical students training in Ontario must now seriously consider taking their skills and talents to another province or jurisdiction in which they can practice their vocation in a manner that upholds their integrity. . .
Abstract Debate persists over the place of conscience in medicine. Some argue for the complete exclusion of conscientious objection, while others claim an absolute right of refusal. This paper proposes that claims of conscientious objection can and should be permitted if they concern kinds of actions which fall outside of the normative standard of medicine, which is the pursuit of health. Medical practice which meets this criterion we call medicine qua medicine. If conscientious refusal concerns something consonant with the health-restoring aims of medicine, it entails a desertion of professional duty. If, however, it relates to something other than medicine qua medicine, it can rightly be refused. It thus becomes possible to test instances of conscientious objection to determine their validity, and thereby conserve both the principle of conscientious objection and define its scope. This test of conscience prevents arbitrary discrimination, and preserves doctors’ agency. It is a theoretical razor rooted in the practical reasoning of medicine whose operation will prompt, if nothing else, reflection on the goals of medicine.
Joseph K. Canner, Omar Harfouch, Lisa M Kodadek, Danielle Pelaez, Devin Coon, Anaeze C Offodile II, Adil H. Haider, Brandyn D Lau
Journal of the American Medical Association
Abstract Importance:Little is known about the incidence of gender-affirming surgical procedures for transgender patients in the United States.
Objectives:To investigate the incidence and trends over time of gender-affirming surgical procedures and to analyze characteristics and payer status of transgender patients seeking these operations.
Design, Setting, and Participants: In this descriptive observational study from 2000 to 2014, data were analyzed from the National Inpatient Sample, a representative pool of inpatient visits across the United States. The initial analyses were done from June to August 2015. Patients of interest were identified by International Classification of Diseases, Ninth Revision, diagnosis codes for transsexualism or gender identity disorder. Subanalysis focused on patients with procedure codes for surgery related to gender affirmation.
Main Outcomes and Measures: Demographics, health insurance plan, and type of surgery for patients who sought gender-affirming surgery were compared between 2000-2005 and 2006-2011, as well as annually from 2012 to 2014.
Results; This study included 37 827 encounters (median [interquartile range] patient age, 38 [26-49] years) identified by a diagnosis code of transsexualism or gender identity disorder. Of all encounters, 4118 (10.9%) involved gender-affirming surgery. The incidence of genital surgery increased over time: in 2000-2005, 72.0% of patients who underwent gender-affirming procedures had genital surgery; in 2006-2011, 83.9% of patients who underwent gender-affirming procedures had genital surgery. Most patients (2319 of 4118 [56.3%]) undergoing these procedures were not covered by any health insurance plan. The number of patients seeking these procedures who were covered by Medicare or Medicaid increased by 3-fold in 2014 (to 70) compared with 2012-2013 (from 25). No patients who underwent inpatient gender-affirming surgery died in the hospital.
Conclusions and Relevance: Most transgender patients in this national sample undergoing inpatient gender-affirming surgery were classified as self-pay; however, an increasing number of transgender patients are being covered by private insurance, Medicare, or Medicaid. As coverage for these procedures increases, likely so will demand for qualified surgeons to perform them.
