Vulnerability and the 'slippery slope' at the end-of-life: a qualitative study of euthanasia, general practice and home death in The Netherlands.

BACKGROUND: One enduring criticism of the Dutch euthanasia policy is the 'slippery slope' argument that suggests that allowing physicians to conduct legal euthanasia or assisted suicide would eventually lead to patients being killed against their will. What we currently know about euthanasia and its practices in The Netherlands is predominantly based on retrospective quantitative or interview-based studies, but these studies fail to detail the mechanisms of day-to-day practice. OBJECTIVE: To examine the practices that surround euthanasia, particularly among vulnerable patients, using qualitative observation-based data. METHODS: A 15-month qualitative, observation-based study of home death and general practice in the greater Amsterdam region of The Netherlands. Study included observation and interviews with a sample of 15 (GPs and 650 of their patients, 192 of whom were living with terminal or life-threatening illness (with and without requests for euthanasia). RESULTS: Euthanasia practice typically involves extensive deliberations, the majority of which do not end in a euthanasia death. Euthanasia discussions or 'euthanasia talk' share at least two consequences: (i) the talk puts the onus on patients to continue discussions towards a euthanasia death and (ii) there is a socio-therapeutic component, which tends to affirm social bonds and social life. CONCLUSION: While this qualitative evidence cannot disprove existence of abuse, it suggests that euthanasia practices have evolved in such a way that patients are more likely to talk about euthanasia than to die a euthanasia death.

Development of the AAS Statement on "Suicide" and "Physician Aid in Dying".

In August 2017, the American Association of Suicidology board passed a statement titled "Suicide" is not the same as "Physician aid in dying," which was developed partly in response to the fact that aid in dying is now legal in a number of jurisdictions. In Phase 1, eight members of the AAS who had indicated interest in this issue were asked to independently draft such a statement; the convener consolidated these drafts and comments into an initial statement. In Phase 2, five additional experts who might be expected to object were asked for their independent input; the convener consolidated these with the previous draft. No one objected to the statement altogether; extensive copyediting and rewording suggestions focused primarily on issues of overlap between "suicide" and "physician aid in dying." The resulting document represents an effort to try to accommodate the basic concerns of all participants. The document does not speak for or against legalization of this practice, but it may have bearing on whether suicide prevention professionals have an obligation to try to prevent such deaths and whether they may serve as consultants for psychological or psychiatric evaluations as sometimes required under US state law.

Should Pediatric Euthanasia be Legalized?

Voluntary active euthanasia for adults at their explicit request has been legal in Belgium and the Netherlands since 2002. In those countries, acceptance of the practice for adults has been followed by acceptance of the practice for children. Opponents of euthanasia see this as a dangerous slippery slope. Proponents argue that euthanasia is sometimes ethically appropriate for minors and that, with proper safeguards, it should be legally available in appropriate circumstances for patients at any age. In this Ethics Rounds, we asked philosophers from the United States and the Netherlands, and a Dutch pediatrician, to discuss the ethics of legalizing euthanasia for children.

Should rapid tests for HIV infection now be mandatory during pregnancy? Global differences in scarcity and a dilemma of technological advance.

Since testing for HIV infection became possible in 1985, testing of pregnant women has been conducted primarily on a voluntary, 'opt-in' basis. Faden, Geller and Powers, Bayer, Wilfert, and McKenna, among others, have suggested that with the development of more reliable testing and more effective therapy to reduce maternal-fetal transmission, testing should become either routine with 'opt-out' provisions or mandatory. We ask, in the light of the new rapid tests for HIV, such as OraQuick, and the development of antiretroviral treatment that can reduce maternal-fetal transmission rates to <2%, whether that time is now. Illustrating our argument with cases from the United States (US), Kenya, Peru, and an undocumented Mexican worker in the US, we show that when testing is accompanied by assured multi-drug therapy for the mother, the argument for opt-out or mandatory testing for HIV in pregnancy is strong, but that it is problematic where testing is accompanied by adverse events such as spousal abuse or by inadequate intrapartum or follow-up treatment. The difference is not a 'double standard', but reflects the presence of conflicts between the health interests of the mother and the fetus--conflicts that would be abrogated by the assurance of adequate, continuing multi-drug therapy. In light of these conflicts, where they still occur, careful processes of informed consent are appropriate, rather than opt-out or mandatory testing.

Motivations for physician-assisted suicide.

OBJECTIVE: To obtain detailed narrative accounts of patients' motivations for pursuing physician-assisted suicide (PAS). DESIGN: Longitudinal case studies. PARTICIPANTS: Sixty individuals discussed 35 cases. Participants were recruited through advocacy organizations that counsel individuals interested in PAS, as well as hospices and grief counselors. SETTING: Participants' homes. MEASUREMENTS AND RESULTS: We conducted a content analysis of 159 semistructured interviews with patients and their family members, and family members of deceased patients, to characterize the issues associated with pursuit of PAS. Most patients deliberated about PAS over considerable lengths of time with repeated assessments of the benefits and burdens of their current experience. Most patients were motivated to engage in PAS due to illness-related experiences (e.g., fatigue, functional losses), a loss of their sense of self, and fears about the future. None of the patients were acutely depressed when planning PAS. CONCLUSIONS: Patients in this study engaged in PAS after a deliberative and thoughtful process. These motivating issues point to the importance of a broad approach in responding to a patient's request for PAS. The factors that motivate PAS can serve as an outline of issues to explore with patients about the far-reaching effects of illness, including the quality of the dying experience. The factors also identify challenges for quality palliative care: assessing patients holistically, conducting repeated assessments of patients' concerns over time, and tailoring care accordingly.

The ethics of self-sacrifice: what's wrong with suicide bombing?

What's wrong with suicide bombing? The tactic has been used by the Tamil Tigers, by the Japanese kamikaze, by al-Qaeda, by Palestinian militants against Israel, by Iraqi defenders loyal to Saddam Hussein against the U.S. invasion, and by others; it is typically understood by these groups as martyrdom rather than suicide. Scientific theories of suicide--biological, psychological, and sociological--do not contribute to an understanding. Nor is the claim that it is amoral, the product of psychopathology or mental illness, adequate. The central moral core of the issue of suicide bombing rests, rather, on the violation of a tacit assumption of equality in combat: "they" have a weapon "we" don't.

Legal physician-assisted dying in Oregon and the Netherlands: evidence concerning the impact on patients in "vulnerable" groups.

BACKGROUND: Debates over legalisation of physician-assisted suicide (PAS) or euthanasia often warn of a "slippery slope", predicting abuse of people in vulnerable groups. To assess this concern, the authors examined data from Oregon and the Netherlands, the two principal jurisdictions in which physician-assisted dying is legal and data have been collected over a substantial period. METHODS: The data from Oregon (where PAS, now called death under the Oregon Death with Dignity Act, is legal) comprised all annual and cumulative Department of Human Services reports 1998-2006 and three independent studies; the data from the Netherlands (where both PAS and euthanasia are now legal) comprised all four government-commissioned nationwide studies of end-of-life decision making (1990, 1995, 2001 and 2005) and specialised studies. Evidence of any disproportionate impact on 10 groups of potentially vulnerable patients was sought. RESULTS: Rates of assisted dying in Oregon and in the Netherlands showed no evidence of heightened risk for the elderly, women, the uninsured (inapplicable in the Netherlands, where all are insured), people with low educational status, the poor, the physically disabled or chronically ill, minors, people with psychiatric illnesses including depression, or racial or ethnic minorities, compared with background populations. The only group with a heightened risk was people with AIDS. While extralegal cases were not the focus of this study, none have been uncovered in Oregon; among extralegal cases in the Netherlands, there was no evidence of higher rates in vulnerable groups. CONCLUSIONS: Where assisted dying is already legal, there is no current evidence for the claim that legalised PAS or euthanasia will have disproportionate impact on patients in vulnerable groups. Those who received physician-assisted dying in the jurisdictions studied appeared to enjoy comparative social, economic, educational, professional and other privileges.

How infectious diseases got left out--and what this omission might have meant for bioethics.

In this article, we first document the virtually complete absence of infectious disease examples and concerns at the time bioethics emerged as a field. We then argue that this oversight was not benign by considering two central issues in the field, informed consent and distributive justice, and showing how they might have been framed differently had infectiousness been at the forefront of concern. The solution to this omission might be to apply standard approaches in liberal bioethics, such as autonomy and the harm principle, to infectious examples. We argue that this is insufficient, however. Taking infectious disease into account requires understanding the patient as victim and as vector. Infectiousness reminds us that as autonomous agents we are both embodied and vulnerable in our relationships with others. We conclude by applying this reunderstanding of agency to the examples of informed consent and distributive justice in health care.

Non-patient decision-making in medicine: the eclipse of altruism.

KIE: Lay decision making on behalf of patients or research subjects--be it by family members, legal guardians, the courts, ethics committees, or other entities--shares with decision making by health professionals the drawback that it interferes with altruistic choice on the part of the patient or subject. This is unfortunate, not only because altruism has the capacity to provide important social goods and to correct distributional injustices, but also for intrinsic reasons. It is argued that preserving the possibility of altruism obliges patients and potential patients to make decisions about dying and other medical matters in advance, thus avoiding the displacement of decision making onto lay and professional second parties.^ieng

What if euthanasia were legal? Introducing the issue.

KIE: Battin and Bole introduce a set of seven papers that "discusses not whether active euthanasia and/or assisted suicide should be legalized but what new moral issues are raised when euthanasia is legalized?" The authors of the papers are philosopher Albert Jonsen, physician-philosopher Grant Gillett, philosopher Michael Burgess, lawyer Martin Gunderson and philosopher David Mayo (2 papers), philosopher-lawyer Leslie Francis, and Jesuit priest Kevin Wildes.^ieng

Are there characteristics of infectious diseases that raise special ethical issues?

This paper examines the characteristics of infectious diseases that raise special medical and social ethical issues, and explores ways of integrating both current bioethical and classical public health ethics concerns. Many of the ethical issues raised by infectious diseases are related to these diseases' powerful ability to engender fear in individuals and panic in populations. We address the association of some infectious diseases with high morbidity and mortality rates, the sense that infectious diseases are caused by invasion or attack on humans by foreign micro-organisms, the acute onset and rapid course of many infectious diseases, and, in particular, the communicability of infectious diseases. The individual fear and community panic associated with infectious diseases often leads to rapid, emotionally driven decision making about public health policies needed to protect the community that may be in conflict with current bioethical principles regarding the care of individual patients. The discussion includes recent examples where dialogue between public health practitioners and medical-ethicists has helped resolve ethical issues that require us to consider the infected patient as both a victim with individual needs and rights and as a potential vector of disease that is of concern to the community.