No (true) right to die: barriers in access to physician-assisted death in case of psychiatric disease, advanced dementia or multiple geriatric syndromes in the Netherlands.

Even in the Netherlands, where the practice of physician-assisted death (PAD) has been legalized for over 20 years, there is no such thing as a 'right to die'. Especially patients with extraordinary requests, such as a wish for PAD based on psychiatric suffering, advanced dementia, or (a limited number of) multiple geriatric syndromes, encounter barriers in access to PAD. In this paper, we discuss whether these barriers can be justified in the context of the Dutch situation where PAD is legally permitted for those who suffer unbearably and hopelessly as a result of medical conditions. Furthermore, we explore whether there are options to address some of the barriers or their consequences, both within the Dutch legal framework or by adjusting the legal framework, and whether these options are feasible. We conclude that although there are insufficient arguments to overrule the doctor's freedom of conscience in the Netherlands, there are ways to address some of the barriers, mainly by offering support to doctors that would be willing to support a request. Moreover, we believe it is morally required to reduce or mitigate where possible the negative consequences of the barriers for patients, such as the long waiting time for those who suffer from psychiatric disorders, because it is unlikely the adjustments suggested to the system will ensure reasonable access for these patient groups.

Nurses' perspectives on advance directives before the establishment of the new well-dying law in Korea: A mixed methods study.

AIM: This study explored the attitudes, experiences, and perceptions of Korean nurses toward advance directives (ADs) before the establishment of new Well-Dying Law. METHODS: A sequential explanatory mixed method design was applied. We administered a constructed questionnaire on attitudes toward ADs and end-of-life issues and experience related to end-of-life decision-making. A Korean-translated version of the KAESAD [Knowledge-Attitudinal, Experimental Survey on ADs] was administered by 245 nurses. Semi-structured interviews (N = 16) were audio-recorded, transcribed, and coded in a qualitative content analysis. RESULTS: The quantitative results revealed the nurses' perspectives on ADs: that valuing patient's autonomy, authority, or rights is vital to the implementation of ADs and end-of-life decision-making. Also, nurses reported that patients should be knowledgeable and informed about ADs. These responses allowed us to generate an interview, which revealed four themes in adopting the Well-Dying Law, including ADs. Themes with 'benefits' and 'roles of health care providers' mainly supported the quantitative results. Themes with 'ethical issues,' such as disagreement between patients and family members on ADs, and 'preparation,' regarding adopting the new law, should be importantly considered when implementing ADs in clinical settings. CONCLUSIONS: Our study highlights that nurses need to develop sufficient knowledge on the laws, and communication skills to help patients be knowledgeable and make their own decisions regarding ADs. To successfully adopt the Well-Dying Law, our findings suggest that a nationwide public campaign and a continuing education program for nurses to manage ethical issues regarding ADs are required.

Amyotrophic Lateral Sclerosis and a "Death With Dignity".

The Oregon "Death With Dignity" Act (DWD Act) allows a terminally ill patient with 6 months to live to ask a physician for medication to end their life. To receive the medication, the DWD Act requires the patient to verbally request the prescription twice 2 weeks apart as well as in writing. Patients with amyotrophic lateral sclerosis have three main barriers to using DWD: (a) the ability to communicate their informed consent as the disease progresses further, (b) the possibility of dementia which may affect their decisional capacity, and (c) given the nature and speed of amyotrophic lateral sclerosis, limited time is available for patients to self-administer the prescription and may rush the time line for the death. This article reviews the current knowledge and addresses the need for adjustments to existing law and recommendations for states considering a DWD law.

Health Care Providers' Experiences with Implementing Medical Aid-in-Dying in Vermont: a Qualitative Study.

BACKGROUND: The evolving legal landscape for medical aid-in-dying (AID) in the USA raises clinical and public health challenges and concerns regarding how health care providers will accommodate AID while expanding access to high-quality end-of-life care. OBJECTIVE: To describe Vermont health care providers' experiences practicing under the "Patient Choice and Control at End of Life" Act. DESIGN: Qualitative semi-structured interviews analyzed using grounded theory. PARTICIPANTS: The larger study included 144 health care providers, terminally ill patients, caregivers, policy stakeholders, and other Vermont residents working in 10 out of Vermont's 14 counties. This article reports on a subset of 37 providers who had clinical experience with the law. MAIN MEASURES: Themes from interviews. KEY RESULTS: Physicians were roughly split between hospital and community-based practices. Most were women (68%) and the largest subgroup specialized in internal or family medicine (53%). Most of the nurses and social workers were women (89%) and most worked for hospice and home health agencies (61%). We identified five domains in which participants engaged with AID: (1) clinical communication and counseling; (2) the Act 39 protocol; (3) prescribing medication; (4) planning for death; and (5) professional education. How providers experienced these five domains of clinical practice depended on their practice setting and the supportive resources available. CONCLUSION: Health care providers' participation in AID involves clinical tasks outside of responding to patients' requests and writing prescriptions. Research to identify best practices should focus on all domains of clinical practice in order to best prepare providers.

Current controversies and irresolvable disagreement: the case of Vincent Lambert and the role of 'dissensus'.

Controversial cases in medical ethics are, by their very nature, divisive. There are disagreements that revolve around questions of fact or of value. Ethical debate may help in resolving those disagreements. However, sometimes in such cases, there are opposing reasonable views arising from deep-seated differences in ethical values. It is unclear that agreement and consensus will ever be possible. In this paper, we discuss the recent controversial case of Vincent Lambert, a French man, diagnosed with a vegetative state, for whom there were multiple court hearings over a number of years. Both family and health professionals were divided about whether artificial nutrition and hydration should be withdrawn and Lambert allowed to die. We apply a 'dissensus' approach to his case and argue that the ethical issue most in need of scrutiny (resource allocation) is different from the one that was the focus of attention.

A Life Fulfilled: Should There Be Assisted Suicide for Those Who Are Done with Living?

The issue of assisted suicide for those with a "fulfilled life" is being hotly debated in the Netherlands. A large number of Dutch people feel that elderly people (i.e., people who have reached the age of 70) with a "fulfilled life" should have access to assisted suicide. Citizens have therefore requested Parliament to expand the existing legislation that governs euthanasia and physician-assisted suicide. The Dutch constitution does not permit national legislation to be incompatible with higher international (human rights) law. An analysis of the case law of the European Court of Human Rights shows that a person's right to decide on the time and manner of his or her death should be regarded as an aspect of the right to privacy. Although no positive obligation has been imposed on parties to the European Convention for the Protection of Human Rights and Fundamental Freedoms to facilitate suicide, they may do so, provided that certain conditions are met.

Is there a place for CPR and sustained physiological support in brain-dead non-donors?

This article addresses whether cardiopulmonary resuscitation (CPR) and sustained physiological support should ever be permitted in individuals who are diagnosed as brain dead and who had held previously expressed moral or religious objections to the currently accepted criteria for such a determination. It contrasts how requests for care would normally be treated in cases involving a brain-dead individual with previously expressed wishes to donate and a similarly diagnosed individual with previously expressed beliefs that did not conform to a brain-based conception of death. The paper first focuses narrowly on requests for CPR and then expands its scope to address extended physiological support. It describes how refusing the brain-dead non-donor's requests for either CPR or extended support would represent enduring harm to the antemortem or previously autonomous individual by negating their beliefs and self-identity. The paper subsequently discusses potential implications of policy that would allow greater accommodations to those with conscientious objections to currently accepted brain-based death criteria, such as for cost, insurance, higher brain formulations and bedside communication. The conclusion is that granting wider latitude to personal conceptions around the definition of death, rather than forcing a contested definition on those with valid moral and religious objections, would benefit both individuals and society.

Aid-in-dying laws and the physician's duty to inform.

On 19 July 2016, three medical organisations filed a federal lawsuit against representatives from several Vermont agencies over the Patient Choice and Control at End of Life Act. The law is similar to aid-in-dying (AID) laws in four other US states, but the lawsuit hinges on a distinctive aspect of Vermont's law pertaining to patients' rights to information. The lawsuit raises questions about whether, and under what circumstances, there is an ethical obligation to inform terminally ill patients about AID as an end-of-life option. Much of the literature on clinical communication about AID addresses how physicians should respond to patient requests for assisted dying, but neglects the question of how physicians should approach patients who may not know enough about AID to request it. In this article, I examine the possibility of an affirmative duty to inform terminally ill patients about AID in light of ethical concerns about professional responsibilities to patients and the maintenance of the patient-provider relationship. I suggest that we should not take for granted that communication about AID ought to be patient-initiated, and that there may be circumstances in which physicians have good reasons to introduce the topic themselves. By identifying ethical considerations that ought to inform such discussions, I aim to set an agenda for future bioethical research that adopts a broader perspective on clinical communication about AID.

[Advance directives in clinical practice : Living will, healthcare power of attorney and care directive]. / Vorausverfügungen im klinischen Alltag : Patientenverfügung, Vorsorgevollmacht und Betreuungsverfügung.

In clinical practice, situations continuously occur in which medical professionals and family members are confronted with decisions on whether to extend or limit treatment for severely ill patients in end of life treatment decisions. In these situations, advance directives are helpful tools in decision making according to the wishes of the patient; however, not every patient has made an advance directive and in our experience medical staff as well as patients are often not familiar with these documents. The purpose of this article is therefore to explain the currently available documents (e.g. living will, healthcare power of attorney and care directive) and the possible (legal) applications and limitations in the routine clinical practice.

The conundrum of hanging points in correctional facilities.

OBJECTIVE: We aimed to explore aspects of the removal of hanging points from correctional facilities. CONCLUSION: An argument can be made that individuals have a right to die/suicide. The United Nations holds that except for freedom of movement, prisoners have the same rights as non-prisoners. The rights of the individual and the duty of many custodial institutions are in conflict. This introduces a conundrum; when all hanging points are removed from correctional facilities, prisoners without mental disorder, but with a sustained wish to die, will not be able to achieve that end, while non-prisoners will be well able to do so.

Commentary on Undue Influence Provisions under Oregon Death with Dignity Act and California's End of Life Option Act.

This article considers the requirements to assess for elements of undue influence under the Oregon Death with Dignity Act (2013) and California's recently assented to End of Life Option Act (2015). Acting voluntarily, that is free from undue influence, is critical to the operation of these statutes. Indeed, assisted dying largely draws its legitimacy from the requirement that voluntariness is well protected. However, this article argues that the requirements under these statutes fall short of adequately protecting a voluntary decision. This article discusses the provisions concerning voluntariness and undue influence under these two statutes, highlighting ostensible limitations therein. Basic recommendations for improvement are proffered. This article concludes by arguing that Australia should not draw inspiration from these statutory provisions because they fail to protect freedom of choice in a meaningful way.

[Recent case law about the right to die]. / Desarrollos recientes en la jurisprudencia sobre el derecho a morir.

This paper reviews the sentences dictated between 1993 and 2002 by the Supreme Courts of Canada and the Unites States, the House of Lords and Supreme Court of the United Kingdom and the European Human Rights Court, about the validity of the legal prohibition of assistance for suicide. These sentences constituted a judicial consensus about the right to die. This consensus recognized the legal right of patients to reject medical treatments but did not recognize the right to be assisted by a physician to commit suicide. This exclusion is changing in the recent case law of Canada and the United Kingdom, which accepts the fundamental right of terminal patients to medically assisted suicide.

Healthcare in Australia.

No single issue has dominated health practitioners' ethical debates in 2014 in Australia, but a controversial decision on gene patenting and the media focus on "Dr. Death," euthanasia campaigner Dr. Philip Nitschke, have given new life to these two familiar (and global) debates. Currently a dying with dignity bill, drafted by the Australian Green Party, is under examination. The Senate inquiry into the bill received more than 663 submissions, with 57% opposed and 43% in support of the bill, which has now been referred to a Senate committee. Will this be another of Australia's failed attempts to legalize euthanasia? The trial of Dr. Nitschke begins on November 10, 2014.

Physician-Assisted Death in Canada.

The Criminal Code of Canada prohibits persons from aiding or abetting suicide and consenting to have death inflicted on them. Together, these provisions have prohibited physicians from assisting patients to die. On February 6, 2015, the Supreme Court of Canada declared void these provisions insofar as they "prohibit physician-assisted death for a competent adult person who (1) clearly consents to the termination of life and (2) has a grievous and irremediable medical condition (including an illness, disease or disability) that causes enduring suffering that is intolerable to the individual in the circumstances of his or her condition." This declaration of invalidity was scheduled to take effect one year (later extended by six months) after the ruling, to give the government time to put legislation in place. We trace the history of this decision, discuss how it has forever changed the debate on physician-assisted dying, and identify the issues that must be resolved to write the legislation. Of special importance here are the topics of access, safeguards, and conscientious objection.

Aid in dying in New Zealand: Recent legal developments.

The issue of "aid in dying" (also called assisted suicide or euthanasia) in New Zealand is deeply contentious. However, until comparatively recently its legal status had not been conclusively determined. That changed in mid-2015 when the case of Seales v Attorney-General [2015] 3 NZLR 556; [2015] NZHC 1239 was heard by the High Court. This article considers the case against the background of existing legal regulation of the dying process. It critically analyses the reasoning in the decision and its potential consequences, as well as noting important factual findings made in the ruling. It concludes by drawing attention to contemporary parliamentary developments in relation to aid in dying, which have come about largely as a result of this case being heard.

Medically assisted suicide: Recent jurisprudence and the challenges for law reform.

Decisions on the issue of medically assisted suicide were delivered within a two-year period by the Supreme Court of Ireland (Fleming v Ireland [2013] IESC 19), the Supreme Court of Canada (Carter v Canada (Attorney General) [2015] 1 SCR 331; 2015 SCC 5), the High Court of South Africa (Stransham-Ford v Minister of Justice and Correctional Services 2015 (4) SA 50; [2015] 3 All SA 109; [2015] ZAGPPHC 230 (GP)), and the High Court of New Zealand (Seales v Attorney-General [2015] 3 NZLR 556; [2015] NZHC 1239). This editorial scrutinises the jurisprudence generated by the decisions, identifies their ramifications and argues that it is likely that the combination of the carefully constructed judgments, together with their reception by the legal, medical and general communities, will lead to an increasing impetus for end-of-life law reform in many countries. It reviews the June 2016 report of the Legal and Social Issues Committee of the Legislative Council of the Victorian Parliament as an example of such reform initiatives. The challenge for those who wish to construct such changes to the law is to fashion legislative regimes which provide adequate protection to patients, as well as to the life-saving culture of medicine, and to safeguard dignity but ensure that respect for the quality of life is not eroded by pressures to end lives that some regard as no longer having value.

Withdrawing artificial nutrition and hydration from minimally conscious and vegetative patients: family perspectives.

In W v M, family members made an application to the Court of Protection for withdrawal of artificial nutrition and hydration from a minimally conscious patient. Subsequent scholarly discussion has centred around the ethical adequacy of the judge's decision not to authorise withdrawal. This article brings a different perspective by drawing on interviews with 51 individuals with a relative who is (or was) in a vegetative or minimally conscious state (MCS). Most professional medical ethicists have treated the issue as one of life versus death; by contrast, families--including those who believed that their relative would not have wanted to be kept alive--focused on the manner of the proposed death and were often horrified at the idea of causing death by 'starvation and dehydration'. The practical consequence of this can be that people in permanent vegetative state (PVS) and MCS are being administered life-prolonging treatments long after their families have come to believe that the patient would rather be dead. We suggest that medical ethicists concerned about the rights of people in PVS/MCS need to take this empirical data into account in seeking to apply ethical theories to medico-legal realities.

Does legal physician-assisted dying impede development of palliative care? The Belgian and Benelux experience.

BACKGROUND: In 2002, physician-assisted dying was legally regulated in the Netherlands and Belgium, followed in 2009 by Luxembourg. An internationally frequently expressed concern is that such legislation could stunt the development of palliative care (PC) and erode its culture. To study this, we describe changes in PC development 2005-2012 in the permissive Benelux countries and compare them with non-permissive countries. METHODS: Focusing on the seven European countries with the highest development of PC, which include the three euthanasia-permissive and four non-permissive countries, we compared the structural service indicators for 2005 and 2012 from successive editions of the European Atlas of Palliative Care. As an indicator for output delivery of services to patients, we collected the amounts of governmental funding of PC 2002-2011 in Belgium, the only country where we could find these data. RESULTS: The rate of increase in the number of structural PC provisions among the compared countries was the highest in the Netherlands and Luxembourg, while Belgium stayed on a par with the UK, the benchmark country. Belgian government expenditure for PC doubled between 2002 and 2011. Basic PC expanded much more than endowment-restricted specialised PC. CONCLUSIONS: The hypothesis that legal regulation of physician-assisted dying slows development of PC is not supported by the Benelux experience. On the contrary, regulation appears to have promoted the expansion of PC. Continued monitoring of both permissive and non-permissive countries, preferably also including indicators of quantity and quality of delivered care, is needed to evaluate longer-term effects.

Health care professionals' comprehension of the legal status of end-of-life practices in Quebec: study of clinical scenarios.

OBJECTIVE: To determine health care professionals' understanding of the current legal status of different end-of-life practices and their future legal status if medical aid in dying were legalized, and to identify factors associated with misunderstanding surrounding the current legal status. DESIGN: Cross-sectional survey using 6 clinical scenarios developed from a validated European questionnaire and from a validated classification of end-of-life practices. SETTING: Quebec. PARTICIPANTS: Health care professionals (physicians and nurses). MAIN OUTCOME MEASURES: Perceptions of the current legal status of the given scenarios and whether or not the practices would be authorized in the event that medical aid in dying were legalized. RESULTS: Among the respondents (n = 271, response rate 88.0%), more than 98% knew that the administration or prescription of lethal medication was currently illegal. However, 45.8% wrongly thought that it was not permitted to withdraw a potentially life-prolonging treatment at the patient's request, and this misconception was more common among nurses and professionals who had received their diplomas longer ago. Only 39.5% believed that, in the event that medical aid in dying were legalized, the use of lethal medication would be permitted at the patient's request, and 34.6% believed they would be able to give such medication to an incompetent patient upon a relative's request. CONCLUSION: Health care professionals knew which medical practices were illegal, but some wrongly believed that current permitted practices were not legal. There were various interpretations of what would or would not be allowed if medical aid in dying were legalized. Education on the clinical implications of end-of-life practice legislation should be promoted.

LECRETIA SEALES AND AID IN DYING IN NEW ZEALAND.

The application by Lecretia Seales, in relation to the lawfulness of physician aid in dying in New Zealand, was heard by Collins J, an experienced medical jurisprudentialist. It raised issues re-ignited by the recent Supreme Court of Canada ruling in Carter v Canada and the legislative change in California. Is a continued prohibition in Australasia and the United Kingdom against physician aid in dying causing patients to be subjected to cruel, inhumane and undignified deaths or, in fact, is a legislative change unnecessary given the level of care that patients can receive and the peaceful and harmonious deaths that we often hear about in hospice and other settings. A range of arguments, some traditional and some very contemporary, were canvassed in the case of Lecretia Seales and Collins J considered each of them, commenting in detail both on points of law and matters of ethical substance. A study of his judgment therefore makes fascinating reading for those interested in end-of-life decisions and the way they are dealt with in different developed world jurisdictions, and in particular, how such ethical matters may be considered from the point of view of indigenous and marginalised cultures.