Family Involvement in the End-of-Life Decision-Making Process: Legal and Bioethical Analysis of Empirical Findings.

End-of-life decision making involves clinicians, patients, and relatives; yet, the law in Israel hardly recognises the role of relatives. This raises the question of the law's impact in practice and, hence, whether it should be amended. This issue is examined on the basis of findings from a qualitative, interview-based study conducted in Israel among relatives of dying patients. The findings indicate that there are areas in which clinicians and relatives do not adhere to the law in the end-of-life decision-making process. For example, they do not always ascertain the patient's end-of-life preferences, which ignores a patient's right to autonomy and their right to make informed decisions. The apparent gaps between the actual conduct of clinicians and relatives on the one hand and the directives of the Israeli Dying Patient Act 2005 on the other, lead us to propose several changes to the Act.

Canadian neurosurgeons' views on medical assistance in dying (MAID): a cross-sectional survey of Canadian Neurosurgical Society (CNSS) members.

BACKGROUND: The Supreme Court of Canada removed the prohibition on physicians assisting in patients dying on 6 February 2015. Bill C-14, legalising medical assistance in dying (MAID) in Canada, was subsequently passed by the House of Commons and the Senate on 17 June 2016. As this remains a divisive issue for physicians, the Canadian Neurosurgical Society (CNSS) has recently published a position statement on MAID. METHODS: We conducted a cross-sectional survey to understand the views and perceptions among CNSS members regarding MAID to inform its position statement on the issue. Data was collected from May to June 2016. RESULTS: Of the 300 active membes of the CNSS who recevied the survey, 89 respondents completed the survey, 71% of whom were attending neurosurgeons and 29% were neurosurgery residents. Most respondents,74.2%, supported the right of physicians to participate in MAID with 7.8% opposing. 37% had current patients in their practice fitting the criteria for MAID. 23.6% had been asked by patients to assist with MAID, but only 11% would consider personally providing it. 84% of neurosurgeons surveyed supported the physicians' right to conscientious objection to MAID while 21% thought attending surgeons should be removed from the inquiry and decision-making process. 43.8% agreed that the requirment to refer a patient to a MAID service should be mandatory. Glioblastoma multiforme (65%), quadriplegia/quadriparesis secondary to spinal tumour/trauma (54%) and Parkinson's disease (24%) were the most common suggested potential indications for MAID among the neurosurgical population. CONCLUSIONS: Our results demonstrate that most neurosurgeons in Canada are generally supportive of MAID in select patients. However, they also strongly support the physicians' right to conscientious objection.

Assessment of decision-making capacity in patients requesting assisted suicide.

In this editorial, we argue that current attitudes toward terminally ill patients are generally too paternalistic, and that it is wrong to assume that patients suffering from mental health issues (including depression) cannot consent to assisted suicide.Declaration of interestNone.

Oregon's Death With Dignity Act: 20 Years of Experience to Inform the Debate.

Twenty years ago, Oregon voters approved the Death With Dignity Act, making Oregon the first state in the United States to allow physicians to prescribe medications to be self-administered by terminally ill patients to hasten their death. This report summarizes the experience in Oregon, including the numbers and types of participating patients and providers. These data should inform the ongoing policy debate as additional jurisdictions consider such legislation.

[New legal regulations for palliative care with implications for politics and practice]. / Neue gesetzliche Regelungen für die Palliativversorgung und ihre Implikationen für Politik und Praxis.

In December 2015 two different laws were adopted. Both are of importance for palliative care. One of the laws criminalizes commercial, "business-like" assisted suicide (§ 217 German Criminal Code), the other one aims to improve hospice and palliative care in Germany. Through the latter far-reaching changes in Social Code Books V and XI, as well as of the Hospital Finance Act have been made. This new Act to Improve Hospice and Palliative Care (HPG) focuses, amongst others, on: (a) Better funding of hospice services, by raising the minimum grant for patients in inpatient hospices paid per day by the health insurance funds by about 28.5%, and for outpatient hospice services by about 18%; (b) further development of general outpatient nursing and medical palliative care, and the networking of different service providers; (c) introduction of an arbitration procedure for service provider agreements to be concluded between the health insurance funds and the teams providing specialized home palliative care (SAPV); (d) the right to individual advice and support by the health insurance funds; (e) care homes may offer their residents advance care planning programs to be funded by the statutory health insurers; (f) palliative care units in hospitals can be remunerated outside the DRG system by per diem rates; (g) separate funding and criteria for multi-professional palliative care services within a hospital.While little concrete impact on hospice and palliative care can be expected following the new § 217 German Criminal Code, the HPG provides a good basis to improve care. For this purpose, however, which complementary and more concrete agreements are made to put the new legal regulations into practice will be crucial.

[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.

Check List for Legislators: Towards a Canadian Approach to End-of-Life Choices.

In this article, the author reviews Supreme Court of Canada and European Court of Human Rights case law to identify the factors the Parliament of Canada should take into account when it creates legislation regulating physician-assisted suicide. He also highlights the Criminal Code provisions that currently govern the provision of assistance in a suicide. The author concludes that the Charter of Rights and Freedoms requires a unique Canadian approach to the subject of physician-assisted suicide--an approach that provides adequate safeguards to protect the vulnerable, adequate oversight to ensure transparency, and adequate accommodation for the ethical and moral concerns of physicians to respect their human rights.

Enabling Choice: Aid in Living as a Predicate to Aid in Dying.

In February 2016, the Canadian Supreme Court argued in a unanimous decision that criminal statutes prohibiting physician-assisted or -directed termination violated the Charter of Rights and Freedoms. In the unanimous judgment, they argued that the promise of "life, liberty, and sanctity of person" in s. 7 enshrined patient choice as a principal Canadian virtue. But for choice to be real, that requires a set of predicate conditions assuring fragile Canadians have free and ready access to a range of medical services including, in a partial list, expert counseling, home care aides, palliative treatment, rehabilitative services, and social support for themselves and familial carers. Where those are absent, choice is illusory and the promise of real choice illusory.

QALYs, euthanasia and the puzzle of death.

This paper considers the problems that arise when death, which is a philosophically difficult concept, is incorporated into healthcare metrics, such as the quality-adjusted life year (QALY). These problems relate closely to the debate over euthanasia and assisted suicide because negative QALY scores can be taken to mean that patients would be 'better off dead'. There is confusion in the literature about the meaning of 0 QALY, which is supposed to act as an 'anchor' for the surveyed preferences on which QALYs are based. In the context of the debate over euthanasia, the QALY assumes an ability to make meaningful comparisons between life-states and death. Not only is this assumption questionable, but the ethical debate is much more broad than the question of whether death is preferable to a state of living. QALYs are derived from preferences about health states, so do not necessarily reflect preferences about events (eg, dying) or actions (eg, killing). This paper presents a new kind of problem for the QALY. As it stands, the QALY provides confused and unreliable information when it reports zero or negative values, and faces further problems when it appears to recommend death. This should preclude its use in the debate over euthanasia and assisted suicide. These problems only apply where the QALY involves or seems to involve a comparison between life-states and death, and are not relevant to the more general discussion of the use of QALYs as a tool for comparing the benefits derived from treatment options.

Physician-assisted death with limited access to palliative care.

Even among advocates of legalising physician-assisted death, many argue that this should be done only once palliative care has become widely available. Meanwhile, according to them, physician-assisted death should be banned. Four arguments are often presented to support this claim, which we call the argument of lack of autonomy, the argument of existing alternatives, the argument of unfair inequalities and the argument of the antagonism between physician-assisted death and palliative care. We argue that although these arguments provide strong reasons to take appropriate measures to guarantee access to good quality palliative care to everyone who needs it, they do not justify a ban on physician-assisted death until we have achieved this goal.

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.

Forensic issues in medical evaluation: competency and end-of-life issues.

Decision-making capacity is a common reason for psychiatric consultation that is likely to become more common as the population ages. Capacity assessments are frequently compromised by misconceptions, such as the belief that incapacity is permanent or that patients with dementia categorically lack capacity. This chapter will review the conceptual framework of decision-making capacity and discuss its application to medical decision-making. We will review selected developments in capacity assessment and recommend an approach to assessing decision-making capacity. We will discuss the unique challenges posed by end-of-life care, including determining capacity, identifying surrogate decision-makers, and working with surrogate decision-makers. We will discuss clinical and legal approaches to incapacity, including advance directives, surrogate decision-makers, and guardians. We will discuss the legal standards based on which surrogates make medical decisions and outline options for resolving disagreements between clinical staff and surrogate decision-makers. We will offer recommendations for approaching decision-making capacity assessments.

Physician-assisted suicide and/or euthanasia: Pragmatic implications for palliative care [corrected].

OBJECTIVE: Despite the availability of palliative care in many countries, legalization of euthanasia and physician-assisted suicide (EAS) continues to be debated-particularly around ethical and legal issues--and the surrounding controversy shows no signs of abating. Responding to EAS requests is considered one of the most difficult healthcare responsibilities. In the present paper, we highlight some of the less frequently discussed practical implications for palliative care provision if EAS were to be legalized. Our aim was not to take an explicit anti-EAS stance or expand on findings from systematic reviews or philosophical and ethico-legal treatises, but rather to offer clinical perspectives and the potential pragmatic implications of legalized EAS for palliative care provision, patients and families, healthcare professionals, and the broader community. METHOD: We provide insights from our multidisciplinary clinical experience, coupled with those from various jurisdictions where EAS is, or has been, legalized. RESULTS: We believe that these issues, many of which are encountered at the bedside, must be considered in detail so that the pragmatic implications of EAS can be comprehensively considered. SIGNIFICANCE OF RESULTS: Increased resources and effort must be directed toward training, research, community engagement, and ensuring adequate resourcing for palliative care before further consideration is given to allocating resources for legalizing euthanasia and physician-assisted suicide.

Non-physician-assisted suicide in The Netherlands: a cross-sectional survey among the general public.

CONTEXT: In The Netherlands, approximately 45% of patients' requests for euthanasia are granted by a physician. After a rejected request, some patients approach non-physicians and ask them for assistance in suicide. Recently, a non-physician who assisted his mother's suicide was declared guilty without punishment. AIM: The aim of the current study was to investigate the opinion of the Dutch general public on non-physician-assisted suicide. METHODS: A cross-sectional survey among the Dutch general public was performed. A total of 1113 respondents were included (response rate 80%). The survey covered two case descriptions in which a patient asks a non-physician for assisted suicide after a non-granted request for physician-assisted dying. In both cases, a son, friend or professional facilitates the suicide by either the provision of information or the purchase of lethal medication. Respondents were invited to give their opinion on these cases and in addition on 10 propositions on non-physician-assisted suicide. RESULTS: When a son provides information on how to acquire lethal medication in case of a patient with a terminal illness, this involvement is accepted by 62% of the respondents. The actual purchase of lethal medication receives less support (38%). If the patient suffers without a serious disease, both forms of assistance are less accepted (46% and 24%, respectively). In addition, only 21% support the legalisation of non-physician-assisted suicide. The Dutch public prefer involvement of a physician in assisted suicide (69%). CONCLUSIONS: The Dutch general public consider non-physician-assisted suicide in some specific cases a tolerable alternative for patients with a rejected request for physician-assisted dying if the assistance is limited to the provision of information. However, the majority do not support the legalisation of non-physician-assisted suicide.

Deathbed wills: assessing testamentary capacity in the dying patient.

BACKGROUND: Deathbed wills by their nature are susceptible to challenge. Clinicians are frequently invited to give expert opinion about a dying testator's testamentary capacity and/or vulnerability to undue influence either contemporaneously, when the will is made, or retrospectively upon a subsequent challenge, yet there is minimal discourse in this area to assist practice. METHODS: The IPA Capacity Taskforce explored the issue of deathbed wills to provide clinicians with an approach to the assessment of testamentary capacity at the end of life. A systematic review searching PubMed and Medline using the terms: "deathbed and wills," "deathbed and testamentary capacity," and "dying and testamentary capacity" yielded one English-language paper. A search of the individual terms "testamentary capacity" and "deathbed" yielded one additional relevant paper. A focused selective review was conducted using these papers and related terms such as "delirium and palliative care." We present two cases to illustrate the key issues here. RESULTS: Dying testators are vulnerable to delirium and other physical and psychological comorbidities. Delirium, highly prevalent amongst terminal patients and manifesting as either a hyperactive or hypoactive state, is commonly missed and poorly documented. Whether the person has testamentary capacity depends on whether they satisfy the Banks v Goodfellow legal criteria and whether they are free from undue influence. Regardless of the clinical diagnosis, the ultimate question is can the testator execute a specific will with due consideration to its complexity and the person's circumstances? CONCLUSIONS: Dual ethical principles of promoting autonomy of older people with mental disorders whilst protecting them against abuse and exploitation are at stake here. To date, there has been scant discourse in the scientific literature regarding this issue.

Concepts of mental capacity for patients requesting assisted suicide: a qualitative analysis of expert evidence presented to the Commission on Assisted Dying.

BACKGROUND: In May 2013 a new Assisted Dying Bill was tabled in the House of Lords and is currently scheduled for a second reading in May 2014. The Bill was informed by the report of the Commission on Assisted Dying which itself was informed by evidence presented by invited experts.This study aims to explore how the experts presenting evidence to the Commission on Assisted Dying conceptualised mental capacity for patients requesting assisted suicide and examine these concepts particularly in relation to the principles of the Mental Capacity Act 2005. METHODS: This study was a secondary qualitative analysis of 36 transcripts of oral evidence and 12 pieces of written evidence submitted by invited experts to the Commission on Assisted Dying using a framework approach. RESULTS: There was agreement on the importance of mental capacity as a central safeguard in proposed assisted dying legislation. Concepts of mental capacity, however, were inconsistent. There was a tendency towards a conceptual and clinical shift toward a presumption of incapacity. This appeared to be based on the belief that assisted suicide should only be open to those with a high degree of mental capacity to make the decision.The 'boundaries' around the definition of mental capacity appeared to be on a continuum between a circumscribed legal 'cognitive' definition of capacity (in which most applicants would be found to have capacity unless significantly cognitively impaired) and a more inclusive definition which would take into account wider concepts such as autonomy, rationality, voluntariness and decision specific factors such as motivation for decision making. CONCLUSION: Ideas presented to the Commission on Assisted Dying about mental capacity as it relates to assisted suicide were inconsistent and in a number of cases at variance with the principles of the Mental Capacity Act 2005. Further work needs to be done to establish a consensus as to what constitutes capacity for this decision and whether current legal frameworks are able to support clinicians in determining capacity for this group.