Much of the public debate around the legalisation of assisted dying remains binary: yes or no. But this is a dangerous oversimplification. Assisted dying laws exist along a continuum, argue Katherine Sleeman and Iain Chalmers
The Australian state of Victoria has become the latest jurisdiction to legalise assisted dying, joining Belgium, Canada, Luxembourg, the Netherlands, and several US states. Although assisted dying remains illegal in the UK, there are signs that the country is inching towards legalisation. For example, in March 2019 the Royal College of Physicians adopted a position of neutrality, and the BMA and Royal College of General Practitioners have both decided to consult their members on whether their official positions should change from opposition.
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BACKGROUND: In the variegated legislative framework on advance directives, the first specific regulation in Italy on this issue came into force only in 2018.
RESEARCH OBJECTIVE: This qualitative study aimed to investigate the implications of the new Italian law on advance directives in clinical practice from the perspective of those who deal with this delicate ethical issue on an everyday basis, that is, Italian healthcare professionals.
RESEARCH DESIGN: A qualitative research design using semi-structured audio-recorded interviews was adopted. The data collection and analysis were performed according to the Grounded Theory approach.
PARTICIPANTS: Nineteen healthcare professionals (16 nurses, 3 physicians) working in a palliative care unit of a research and clinical institute in Italy.
ETHICAL CONSIDERATIONS: The study is part of the WeDistress HELL Project (WEllness and DISTRESS in HEalth care professionals dealing with end of Life and bioethicaL issues) approved by the Ethical Committee of ICS Maugeri - Institute of Pavia (Italy).
FINDINGS: The authors identified a main overall category, 'Pros and Cons of the Italian law on advance directives', composed of six constituent categories: Positive welcome, Self-determination and protection, Prompts for future betterment, Uncertainties, Lack of knowledge, and Neutrality and no suggestions.
DISCUSSION: The Italian law n. 219/2017 on advance directives was seen as a legal instrument possessing both strengths and weaknesses, but able to guarantee the patient's self-determination and support healthcare professionals in providing care according to patients' wishes.
CONCLUSION: An understanding of the healthcare providers' perspective may support the discussion on advance directives and bridge the gaps that currently persist in handling ethical issues.
In this article we critically evaluate an argument against state-sanctioned euthanasia made by David Velleman in his 1992 paper 'Against the right to die'. In that article, Velleman argues that legalizing euthanasia is morally problematic as it will deprive eligible patients of the opportunity of staying 'alive by default'. That is to say, those patients who are rendered eligible for euthanasia as a result of legislative reform will face the burden of having to justify their continued existence to their epistemic peers if they are to be perceived as 'reasonable'. We discuss potential criticisms that could be made of the argument, and consider how a defender of the view might respond. Velleman's argument is particularly interesting as it is a consequentialist argument against state-sanctioned euthanasia, challenging the many consequentialist arguments that have been made in favour of legalizing the procedure. We conclude by suggesting that further research on the question of unfair burdens is important to adequately evaluating the potential harms of legalizing euthanasia for patients at the end of life.
OBJECTIVE: Euthanasia has been considered unethical for most of the history of medicine. Recently it has been legalised in some countries, including parts of Australasia. We describe the recent history of euthanasia, paying attention to the extension of criteria that impact on the poor, elderly and vulnerable members of society in countries that currently have legalised this. In four of the five countries where euthanasia is legalised, there have been extensions of its criteria, either by revision of legislation or changes in practice.
CONCLUSIONS: We suggest that this dynamic can be halted by international agreements of medical societies to shun involvement in euthanasia, as has been the case with other legal interventions that stigmatise. We may, as we have in the past, need to work collectively to meet this ethical challenge.
Dans le débat sur la fin de vie qui anime la société française, le citoyen est sommé d’avoir un avis bien tranché et de dire si, oui ou non, il est favorable à l’euthanasie. Mais sommes-nous bien "armés" pour penser la fin de vie ? Connaissons-nous les implications éthiques, les droits du patient et des familles, les dispositions légales autour des obligations des médecins et des soins palliatifs ?
En clarifiant, de façon méthodique et pédagogique, les notions fondamentales de finitude, souffrance, dignité et liberté, Jacques Ricot permet à chacun de mieux comprendre tous les enjeux philosophiques, sociétaux et juridiques de la fin de vie.
Dans cette 2e édition entièrement revue, l’auteur poursuit sa réflexion éthique en proposant plusieurs enseignements autour de la vie et de la mort de Vincent Lambert et en décrivant l’évolution récente du débat sur la légalisation de l’euthanasie.
L’auteur propose de dépasser l’opposition si totale entre les pro et anti euthanasie. Son questionnement s’écarte volontairement du projet d’écriture d’une loi spécifique sur l’euthanasie, mais propose de donner suite à la brèche qu’avait ouverte la loi Claeys-Leonetti avec la sédation profonde et la suppression de l’obligation de réveil pour consentement. Il suggère ainsi d’étendre sous conditions strictes la sédation terminale à des cas d’euthanasie ou d’assistance au suicide. Au regard de l’extrême minorité des cas de patients atteints d’une maladie incurable mais dont le corps est loin d’être au bout de ses peines et qui demandent comme Anne Bert en son temps une aide médicale à mourir, Philippe Bataille plaide en faveur d’une évolution de la loi française dans le sens de la législation canadienne.
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La Loi du 2 février 2016 reconnaît au patient le droit de bénéficier d'une Sédation Profonde et Continue Maintenue Jusqu'au Décès (SPCMJD) associée à une analgésie. Il s'agit de qualifier les signes de souffrance vécus comme insupportables chez une personne gravement malade, dont le pronostic vital est engagé à très court terme. Si la loi promulgue ce droit, nos expériences cliniques démontrent de l'ampleur des difficultés à appréhender ce soin, notamment lorsqu'il s'agit de qualifier le caractère insupportable de la souffrance et de faire face à des subjectivités multiples. Ce sujet amène à un nécessaire recul et à des pratiques réflexives élaborées pour éclairer l'ensemble des partenaires dans l'application de la loi.
The problem of opioid diversion and its contribution to the opioid epidemic are well known nationally, existing even within hospice care. Proper disposal of opioids may be a critical factor in reducing diversion. In 2014, Ohio implemented legislation requiring a hospice employee to destroy or witness disposal of all unused opioids within a patient’s plan of care. The purpose of this study was to determine the impact of Ohio Revised Code 3712.062 on hospice programs’ policies and procedures to prevent opioid diversion in the home. Directors of Ohio-licensed hospices were surveyed to assess the percentage of programs with a written policy in place for disposal of opioids and to calculate a compliance score based on responses to survey questions assessing compliance with legislation components. Fifty-two surveys were completed (39.4%). All survey respondents reported having a written policy in place. A 95.5% average compliance score was calculated, with the largest disparity occurring with timing of opioid disposal. While Ohio Revised Code 3712.062 requires opioid disposal at the time of patient’s death or when no longer needed by the patient, only 84% of respondents report disposing opioids upon discontinuation. Overall, a high compliance rate was seen among hospice programs indicating such regulation is manageable to meet.
This article, prompted by an extended essay published in the Journal of Medical Ethics by Charles Foster, and the current controversy surrounding the case of Vincent Lambert, analyses the legal and ethical arguments in relation to the withdrawal of life-sustaining treatment from patients with prolonged disorders of consciousness. The article analyses the legal framework through the prism of domestic law, case-law of the European Court of Human Rights and the Convention on the Rights of Persons with Disabilities, and examines the challenge to the ethical consensus made by Foster. It concludes that the right approach remains a version of the approach that has prevailed for the last 25 years since the decision in Airedale NHS Trust v Bland AC 789, refined to reflect that that there is now, and rightly, a much more limited place for judgments made about the 'burden' of treatment or the quality of life enjoyed by the person made on the basis of assumptions about that person as a category as opposed to investigation of that person as an individual human being.
The Victorian Voluntary Assisted Dying Act 2017 (VAD Act), which commenced on 19 June 2019, permits voluntary assisted dying (VAD) in limited circumstances in Victoria. In addition to Victoria, the Western Australian government is currently developing its own VAD legislation, and Parliamentary committees have been established in Queensland and South Australia to consider reform. Although repeated attempts to reform the law have been generally unsuccessful, it now appears legislation may be more likely to pass.
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During recent years, arguments supporting and opposing the legalisation of assisted dying have greatly intensified. The issue is a matter for society to decide, but physicians and psychiatrists have an essential role in informing public and parliamentary opinion on the contributions and limitations of medical knowledge related to the assessment of patients who request assisted dying and the necessity for strict safeguards should it be legalised. Some of the more important aspects of assessment and safeguards are discussed in this paper.
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.
On April 5, 2018, Governor David Ige signed the Hawai‘i Our Care, Our Choice Act. This legislation allows eligible terminally ill adults to request medical aid-in-dying (MAID). MAID is defined as “A safe and trusted medical practice in which a terminally ill, mentally capable adult with a prognosis of six months or less to live may request from his or her doctor a prescription for medication, which she or he can choose to self-administer to bring about a peaceful death.” MAID has also been referred to as physician-assisted suicide, or physician-assisted death. On January 1, 2019, Hawai‘i became the eighth US jurisdiction (preceded by California, Colorado, Montana, Oregon, Vermont, Washington state, and Washington, D.C) to implement the law authorizing MAID.
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BACKGROUND: Laws allowing assisted suicide and euthanasia have been implemented in many locations around the world but some individuals suffering with terminal illness receiving palliative care services are hastening death or die by suicide without assistance. This systematic review aims to summarise evidence of palliative care professionals' experiences of patients who died by suicide or hastened death in areas where assisted dying is legal and to understand when hastened death is considered to be a suicide.
METHODS: AMED, CINAHL Complete, PsycINFO, PubMED, and Academic Search Ultimate were searched for articles from inception through June 2018. Quality assessment used the Hawker framework.
RESULTS: A total of 1518 titles were screened resulting in thirty studies meeting eligibility criteria for this review. Published studies about professionals' experiences from areas with legalised assisted dying includes limited information about patients who hasten death outside legal guidelines, die by suicide without assistance, or if the law impacts suicide among palliative care patients.
CONCLUSION: There are a range of experiences and emotions professionals' experience with patients who die by euthanasia, assisted suicide, or hasten death without assistance. The included literature suggests improved communication among professionals is needed but does not explicitly identify when a hastened death is deemed a suicide in areas where assisted dying is practiced. More research is needed to help clarify what hastened death means in a palliative care context and identify how and if assisted dying impacts issues of suicide in palliative care settings.
Twenty years ago, the passage of the Oregon Death with Dignity Act prompted vigorous debate in my bioethics classrooms; now, the issue barely generates a ripple. Instead, we focus on an issue my students' generation will confront, as illustrated by an amendment to the ODDA introduced in the last Oregon legislative session that would have effectively rescinded two core procedural safeguards: patient decision-making capacity when requesting life-ending medication and self-administration of the medication. Patient requests for medication could be stipulated on an advance directive that appoints an "expressly identified agent" authorized, in the event of loss of decision-making capacity, "to collect and to administer to the patient the prescribed medication." The amendment heralds a shift from physician-assisted death to medical aid in dying and from prescriptions ingested by patients to life-ending medication administered by a physician or even by the patient's "agent." This prospect generates a bit more angst amongst my students, but their acculturation in the ethics of individual choice prevails. Our discussion about the ethics of medical aid in dying inescapably turns to a deeper issue: is there a professional ethos independent of autonomy?
Background: There is a growing preference for the use of marijuana for medical purposes, despite limited evidence regarding its benefits and potential safety risks. Legalization status may play a role in the attitudes and preferences toward medical marijuana (MM).
Objectives: The attitudes and beliefs of cancer patients in a legalized (Arizona) versus nonlegalized state (Texas) regarding medical and recreational legalization and medical usefulness of marijuana were compared.
Settings/Subjects: Two hundred adult cancer patients were enrolled from outpatient Palliative Care centers at Banner MD Anderson Cancer Center in Gilbert, AZ (n = 100) and The University of Texas MD Anderson Cancer Center in Houston, TX (n = 100).
Design and Measurements: Adult cancer patients seen by the Palliative Care teams in the outpatient centers were evaluated. Various physical and psychosocial assessments were conducted, including a survey of attitudes and beliefs toward marijuana.
Results: The majority of individuals support legalization of marijuana for medical use (Arizona 92% [85–97%] vs. Texas 90% [82–95%]; p = 0.81) and belief in its medical usefulness (Arizona 97% [92–99%] vs. Texas 93% [86–97%]; p = 0.33) in both states. Overall, 181 (91%) patients supported legalization for medical purposes whereas 80 (40%) supported it for recreational purposes (p < 0.0001). Patients preferred marijuana over current standard treatments for anxiety (60% [51–68%]; p = 0.003). Patients found to favor legalizing MM were younger (p = 0.027), had worse fatigue (p = 0.015), appetite (p = 0.004), anxiety (p = 0.017), and were Cut Down, Annoyed, Guilty, and Eye Opener-Adapted to Include Drugs (CAGE-AID) positive for alcohol/drugs (p < 0.0001).
Conclusion: Cancer patients from both legalized and nonlegalized states supported legalization of marijuana for medical purposes and believed in its medical use. The support for legalization for medical use was significantly higher than for recreational use in both states.
OBJECTIVES: On 19 June 2019, assisted dying became lawful in Victoria, the second most populous state in Australia. Section 8 of the Voluntary Assisted Dying Act is a legislative safeguard that is designed to ensure a patient's request for assistance to die is voluntary. This section prohibits health practitioners from initiating a conversation about assisted dying with the patient. This article explores the potential implications of this prohibition for effective communication between doctors and their patients, and the ability of doctors to provide high quality end-of-life (EOL) care in some cases.
METHOD: The authors reviewed and analysed literature on the importance of communication at the EOL including the need to understand and appropriately respond to Desire to Die or Desire to Hasten Death statements. A legal critique of section 8 of the Victorian Voluntary Assisted Dying Act was also undertaken to determine the scope of this new duty and how it aligns with existing legal obligations that would otherwise require doctors to provide information about EOL options requested by a patient.
RESULTS: Contemporary literature suggests that open and honest communication between doctor and patient including the provision of information about all EOL options when sought by the patient represents good clinical practice and will lead to optimal EOL care. The provision of such information also reflects professional, ethical and legal norms.
CONCLUSION: Despite (arguably) promoting an appropriate policy objective, the legislative prohibition on health professionals initiating conversations about voluntary assisted dying may, in cases where patients seek information about all EOL options, lead to less optimal patient outcomes.
The paper is a first thorough examination of what happens to one’s emails on death. The paper demonstrates that some content of emails can be protected by copyright and transmitted on death accordingly. The paper then analyzes the contractual provisions of the main email providers, Google and Microsoft, in order to determine how these contracts, regulate the transmission of emails on death. The author finds that these provisions complicate the issues of property and transmission of digital assets and do not offer a meaningful control over the assets for their users. The paper adopts a novel focus introduced in the author’s earlier research, the idea of post-mortem privacy that is the right to privacy after death. This concept serves as an argument against the default transmission of emails on death without the deceased’s consent, whether through the laws of intestacy or by requiring the service providers to provide access to the deceased’s emails. Finally, the paper canvasses a solution which combines law and technology. It is argued that much more control should be placed in the hands of emails users. Post-mortem privacy, a potentially contested phenomenon, only accentuates the need to better account for the interests of the deceased, having in mind the volume of personal data and personal nature of emails. Therefore, an in-service solution is promoted, backed up by policy and legislation.
The present article reviews the state of public debate and legal provisions concerning end-of-life decision-making in Italy and offers an evaluation of the moral and legal issues involved. The article further examines the content of a recent law concerning informed consent and advance treatment directives, the main court pronouncements that formed the basis for the law, and developments in the public debate and important jurisprudential acts subsequent to its approval. The moral and legal grounds for a positive evaluation of this law, which attests that the patient may withhold or withdraw from life-prolonging treatment, will be offered with reference to liberal approaches and particularly to the frameworks of care and virtue ethics; but reasons will also be offered in order to consider not only the latter but also broader range of end-of-life treatment decisions as morally apt options. In this light, we argue in favour of a further development of the Italian legislation to encompass forms of assisted suicide and active euthanasia.
Background: The End of Life Option Act (EOLOA) legalized physician aid in dying for competent, terminally ill Californians in 2016. The law allows clinicians, hospitals, and health systems to decide whether to participate. About 4 in 10 California hospitals permit the EOLOA, but little is known about their approaches and concerns.
Objective: Describe hospital EOLOA policies and challenges.
Design and Measurements: Survey study of hospitals in California, administered September 2017 to March 2018. We describe hospital policies concerning the EOLOA and perform thematic analysis of open-ended questions about challenges, including availability of providers, process of implementing EOLOA, experiences of distress by providers and patients, and questions about medications.
Results: Of 315 hospitals surveyed, 270 (86%) responded. Every surveyed hospital had established a position on the EOLOA. Among hospitals permitting EOLOA, 38% required safeguards not required in the law, 87% provided for referral to another provider if the patient's physician did not participate, and 65% counseled staff, if needed. Among hospitals not permitting the EOLOA, nearly all allowed providers to follow patients choosing to pursue the EOLOA elsewhere and most permitted a provider to refer to another provider or system. Most hospitals expressed concerns about implementation of the EOLOA and interest in sharing promising practices.
Conclusions: This survey of California hospitals demonstrates considerable heterogeneity in implementing the EOLOA. For many Californians, access to the EOLOA depends on where one receives medical care. Implementation would be improved by hospitals and health systems sharing promising practices.