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.

Cruzan after Dobbs: What Remains of the Constitutional Right to Refuse Treatment?

In 2022, the U.S. Supreme Court removed constitutional protection from the individual's right to end a pregnancy. In Dobbs v. Jackson Women's Health Organization, the Court invalidated previous rulings protecting that right as part of the individual liberty and privacy interests embedded in the U.S. Constitution. Now, many observers are speculating about the fate of other rights founded on those interests. The Dobbs ruling conflicts with the Court's 1990 Cruzan decision restricting the government's power to interfere with personal medical choices. The language and reasoning in Dobbs and Cruzan offer guidance on how the Court might address future cases involving the right to refuse life-sustaining treatment. The decisions also point to policy strategies for preserving that right.

En busca del buen morir / In search of a good death

La muerte siempre ha generado desconcierto, por lo que acompañar en este proceso de final de vida conlleva un alto compromiso existencial. Si a esta difícil tarea se le agregan los condicionantes hospitalarios o legales que sufren los enfermos en su agonía, estamos ante una muerte aterradora, muy distante de una partida que pueda ser considerada amorosa. Como sabemos, la palabra "clínica" hace referencia a la práctica de atender al pie de la cama del paciente, aliviando el dolor del que está por partir; sin embargo, el "corsé legal" de la muerte está alejando al médico de aquel que debiera recibir toda su atención y sus cuidados, atándole el brazo para acompañarlo en el buen morir. Deberíamos debatir y acordar una estrategia que enriquezca la experiencia del momento final de la vida, de modo que ese conjunto acotado de pacientes pueda elegir su forma de partir. Es de un valor incalculable despertar la compasión en este tema tan importante que preocupa al ser humano desde los inicios de la civilización. Sería muy fructífero que aprovechemos la transmisión de sabiduría de siglos de antiguas culturas que han sabido cuidar con humildad la vida hasta el instante de morir. (AU)

Death has always implied confusion, so accompanying this end-of-life process entails a highexistential commitment. If we add to this difficult task the hospital or legal constraints suffered bypatients in their agony, we are facing a terrifying death, very far from a departure that can be considered a loving one. As we know, the word "clinical" refers to the practice of caring for the patient very close to the bed, alleviating the pain of whom is about to leave; however, the "legal corset" of death is separating the doctor from the one who should receive all his attention and care, preventing him from accompanying the pacient in his/her good dying. We should discuss and agree on a strategy that enriches the experience of the end of life, so that patients could choose the way to leave. It is of incalculable value to awaken compassion on this important issue that has concerned human since the beggining of civilization. It would be very fruitful if we take advantage of the enormous wisdom of ancient cultures that have humbly cared for life until the moment of death. (AU)

Uninformed consent: Who knows what Ivan Ilyich would have thought?

ABSTRACT: In the modern era, when prolonging life is not an option, the end-of-life discussions are unavoidably influenced by Neuroethics. Despite this, it is interestingly evident how the sentiments of a terminal patient of 1885 and a physician of 2020, are still comparable. This paper pre-sents the arguments behind the so-called "Therapeutic Misconception" and the aim of palliative care to provide dying patients support. It is essential to address priorities of informed consent, signed before any remedy is provided. A key component of the newest Neuroscience research is the analysis of motivation and free will. So, it is necessary to comprehend if the patient struggles to feel at peace with these aspects of his "right to die": Is he free to choose or is he influenced by the doctors? Is this confusion an example of "Therapeutic Misconception"? Is his Informed Consent totally "Informed"? In order to broaden our understanding, we account for many critical situations, such as the mentally impaired Psychiatric patients or the famous Italian case of Eluana Englaro. In addition, we suggested some current approaches such as Artificial Intelligence, useful in preserving some cognitive functions the patient may have lost. Furthermore, research in this field is very critical and in some Catholic countries like Italy, people faced difficulties accepting the idea of the "Anticipated directives". In general, whatever the mental status and whatever the terminal state, the patients seem still far from handling their own auto-determination and their Consent, even if the ultimate goal is to die with dignity.

Assessment of capacity to give informed consent for medical assistance in dying: a qualitative study of clinicians' experience.

BACKGROUND: Under the Canadian Criminal Code, medical assistance in dying (MAiD) requires that patients give informed consent and that their ability to consent is assessed by 2 clinicians. In this study, we intended to understand how Canadian clinicians assessed capacity in people requesting MAiD. METHODS: This qualitative study used interviews conducted between August 2019 and February 2020, by phone, video and email, to explore how clinicians assessed capacity in people requesting MAiD, what challenges they had encountered and what tools they used. The participants were recruited from provider mailing listserves of the Canadian Association of MAiD Assessors and Providers and Aide médicale à mourir. Interviews were audio-recorded and transcribed verbatim. The research team met to review transcripts and explore themes as they emerged in an iterative manner. We used abductive reasoning for thematic analysis and coding, and continued to discuss until we reached consensus. RESULTS: The 20 participants worked in 5 of 10 provinces across Canada, represented different specialties and had experience assessing a total of 2410 patients requesting MAiD. The main theme was that, for most assessments, the participants used the conversation about how the patient had come to choose MAiD to get the information they needed. When the participants used formal capacity assessment tools, this was mostly for meticulous documentation, and they rarely asked for psychiatric consults. The participants described how they approached assessing cases of nonverbal patients and other challenging cases, using techniques such as ensuring a quiet environment and adequate hearing aids, and using questions requiring only "yes" or "no" as an answer. INTERPRETATION: The participants were comfortable doing MAiD assessments and used their clinical judgment and experience to assess capacity in ways similar to other clinical practices. The findings of this study suggest that experienced MAiD assessors do not routinely require formal capacity assessments or tools to assess capacity in patients requesting MAiD.

Aid in Dying: Implications for Nurses.

The practice is now legal in nine states and the District of Columbia.

Physician-Assisted Suicide for Patients with Head and Neck Cancer.

A retrospective observational cohort study was conducted using data from Oregon's Death with Dignity Act (DWDA) to characterize patients with head and neck cancer (HNC) who seek physician-assisted suicide (PAS). Between 1998 and 2018, a total of 57 patients with HNC received DWDA prescriptions, of whom 39 (68.4%) died by administration of the prescribed medication. There were no associated complications with medication administration. The most commonly involved subsites were oral cavity (33.3%) and oropharynx (30.8%), and the most commonly cited end-of-life concerns were loss of ability to engage in activities that make life enjoyable (79.5%) and loss of autonomy (74.4%). There were no differences in age, race, marital status, or hospice enrollment rates between patients with HNC who died by administration and those who were prescribed but did not administer the medication. Patients who died by administration were generally less educated as compared to those who were prescribed but did not administer the medication (P = .015).

[Withdrawal of life support in the permanent vegetative state, and a dignified death]. / Suspensión de soporte vital en el estado vegetativo permanente y muerte digna.

Patient relatives often request withdrawal of life support, especially artificial nutrition and hydration, in cases of permanent vegetative or minimally conscious state, and resort to court in case of disagreement. Two recent cases of withdrawal authorized by the courts concerned, one from abroad and one from Argentina, have been controversial. Although it may appear inhuman to stop feeding and hydrating such patients, to continue it only prolongs a state of irreversible biological subsistence. Families tend to increasingly accept withdrawal if the patient status remains unchanged. However, concern persists regarding the suffering that patients may undergo from onset of withdrawal till death, even though such suffering is little conceivable in the absence of cortical function and conscience content. While doctors and the layman consider ethical to withdraw life support, a nonnegligible proportion of doctors consider that vegetative state patients, even more minimally conscious state patients, do experience hunger, thirst and pain. In some countries, like the United Kingdom, strict withdrawal criteria were proposed, together with pharmacological treatment schemes for the distress arising during the withdrawal period, even though its benefit is controversial. In Argentina, two scientific societies have publicly advocated withdrawal, but not issued formal guidelines. In any case, both "dignified death" Law 26.742 and the Civil Code consent withdrawal of life support, if accompanied by appropriate relief of clinical symptoms indicating suffering.

Es frecuente que familiares directos soliciten la suspensión de soporte vital, en particular de la hidratación y nutrición asistidas, en pacientes con estado vegetativo o de mínima conciencia permanente, y que recurran a la justicia en caso de desacuerdo. Dos casos recientes de suspensión, uno del exterior y otro argentino, autorizados por los tribunales respectivos, han sido motivo de controversia. Si bien puede parecer inhumano dejar de alimentar e hidratar, continuar haciéndolo solo prolonga un estado de supervivencia biológica irreversible. Las familias tienden a aceptar la suspensión si el paciente se mantiene sin cambios. Sin embargo, persiste preocupación por el posible sufrimiento desde la suspensión hasta la muerte, aunque el mismo es poco concebible en ausencia de función cortical y de conciencia. Si bien médicos y profanos consideran ético suspender el soporte vital, una cierta proporción de médicos considera que en el estado vegetativo, o más aún, en mínima conciencia, efectivamente se experimenta hambre, sed y dolor. En países como el Reino Unido, se han propuesto criterios de suspensión de soporte vital, y esquemas de tratamiento para el malestar durante el período de suspensión, aunque su beneficio efectivo es controvertido. La Argentina cuenta con recomendaciones de dos sociedades científicas, pero no con criterios reglamentados. Pero tanto la Ley 26.742 de "muerte digna" como el Código Civil consienten la suspensión del soporte vital en el estado vegetativo o de mínima conciencia, si se acompaña de medidas de alivio de los síntomas clínicos que puedan significar sufrimiento.

Suspensión de soporte vital en el estado vegetativo permanente y muerte digna / Withdrawal of life support in the permanent vegetative state, and a dignified death

Es frecuente que familiares directos soliciten la suspensión de soporte vital, en particular de la hidratación y nutrición asistidas, en pacientes con estado vegetativo o de mínima conciencia permanente, y que recurran a la justicia en caso de desacuerdo. Dos casos recientes de suspensión, uno del exterior y otro argentino, autorizados por los tribunales respectivos, han sido motivo de controversia. Si bien puede parecer inhumano dejar de alimentar e hidratar, continuar haciéndolo solo prolonga un estado de supervivencia biológica irreversible. Las familias tienden a aceptar la suspensión si el paciente se mantiene sin cambios. Sin embargo, persiste preocupación por el posible sufrimiento desde la suspensión hasta la muerte, aunque el mismo es poco concebible en ausencia de función cortical y de conciencia. Si bien médicos y profanos consideran ético suspender el soporte vital, una cierta proporción de médicos considera que en el estado vegetativo, o más aún, en mínima conciencia, efectivamente se experimenta hambre, sed y dolor. En países como el Reino Unido, se han propuesto criterios de suspensión de soporte vital, y esquemas de tratamiento para el malestar durante el período de suspensión, aunque su beneficio efectivo es controvertido. La Argentina cuenta con recomendaciones de dos sociedades científicas, pero no con criterios reglamentados. Pero tanto la Ley 26.742 de "muerte digna" como el Código Civil consienten la suspensión del soporte vital en el estado vegetativo o de mínima conciencia, si se acompaña de medidas de alivio de los síntomas clínicos que puedan significar sufrimiento.

Patient relatives often request withdrawal of life support, especially artificial nutrition and hydration, in cases of permanent vegetative or minimally conscious state, and resort to court in case of disagreement. Two recent cases of withdrawal authorized by the courts concerned, one from abroad and one from Argentina, have been controversial. Although it may appear inhuman to stop feeding and hydrating such patients, to continue it only prolongs a state of irreversible biological subsistence. Families tend to increasingly accept withdrawal if the patient status remains unchanged. However, concern persists regarding the suffering that patients may undergo from onset of withdrawal till death, even though such suffering is little conceivable in the absence of cortical function and conscience content. While doctors and the layman consider ethical to withdraw life support, a nonnegligible proportion of doctors consider that vegetative state patients, even more minimally conscious state patients, do experience hunger, thirst and pain. In some countries, like the United Kingdom, strict withdrawal criteria were proposed, together with pharmacological treatment schemes for the distress arising during the withdrawal period, even though its benefit is controversial. In Argentina, two scientific societies have publicly advocated withdrawal, but not issued formal guidelines. In any case, both "dignified death" Law 26.742 and the Civil Code consent withdrawal of life support, if accompanied by appropriate relief of clinical symptoms indicating suffering.

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.

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.

[Medical assistence to die, and law.] / Aiuto medico a morire e diritto: per la costruzione di un dibattito pubblico plurale e consapevole.

On October 24, 2018 the Italian Constitutional Court held that the absolute ban on assisted suicide provided for by Art. 580 of the Italian criminal code is unconstitutional under certain conditions. On the one hand, this Article «serves the purpose of protecting interests that are worthy of protection by the legal system¼ (p. 6), such as life and the protection of weak and vulnerable people. On the other hand, in specific situations like the one in the DJ Fabo's case, the assistance to die «may seem to the sick person to be the only way out of being kept alive by artificial methods that are no longer desired, and which he or she has the right to refuse¼ (p. 8). In particular the Court has set four conditions under which the absolute prohibition of suicide assistance can turn to be unconstitutional, and namely in those cases in which «assisted persons are (a) affected by an illness that is incurable and (b) causes physical or psychological suffering, which they find absolutely intolerable, and who are (c) kept alive by means of life support treatments, but remain (d) capable of making free and informed decisions¼ (p. 8). In such a situation the absolute ban on suicide assistance obliges the patient to «undergo a slower process, in a scenario that corresponds less well to the patient's vision of a dignified death and which is marked by more pain and suffering for the people close to the patient¼ (p. 9). Being aware of the impact and scope of its remarks and of the values at stake, the Court decided not to immediately declare the unconstitutionality of art. 580 of the criminal code, but rather to postpone the official discussion of the questions of constitutionality to the hearing on September 24, 2019. In a «"collaborative" and "dialogical"¼ perspective, the Court thus called upon the Parliament to regulate a subject which is at the «intersection between values of primary importance, the balancing of which presupposes, in a direct and immediate way, choices that the legislator is, first of all, authorized to make¼ (p. 11). As already known, the Parliament has not passed a law on assisted suicide so far; the Court will therefore decide at the hearing on September 24 how to amend what has already defined as a «unconstitutional regulatory scheme¼ (p. 11). Against this background and considering the reasoning of the Court in December 2018, the Authors of this Document - legal scholars and professionals with long-standing experience in these topics - decided to open an interdisciplinary discussion on the main legal end-of-life issues. Starting from the Order but without limiting the analysis to it, the Working Group met on a monthly basis at the University of Trento and with the support of the Jean Monnet BioTell Project, addressing and studying in depth the large number of tricky issues raised by the Order of the Constitutional Court and linked to a possible Parliament decision. The results of these discussions have been gathered and developed in the Document together with some operational proposals, offering a "constitutionally oriented" and scientific grounded understanding of end-of-life issues. The Working Group thus aimed to contribute to the public debate suggested by the Court, which must be truly informed and plural due to the impact on institutional choices. On September 25, the Constitutional Court ruled the impunity of those who foster the suicide under the conditions expressed in the Court press release reporting the Court's judgment.

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.

Dying with Dignity; Living with Laws (and Ethics).

An increasing number of jurisdictions allow individuals to obtain medication prescribed by their physicians for medical assistance in dying (MAID). But discussion of whether (and to what extent) individuals have the right to use the health care system to control the time and manner of their death is not limited to MAID. The right also exists in other contexts, such as directing the withdrawal of life-sustaining treatments. Palliative (or terminal) sedation involves medications to render a patient unconscious, coupled with either the withdrawal of artificial nutrition and hydration or their not being administered at all. In high-enough doses, these medications may further suppress already-weakened cardiopulmonary function even if there is no intent to hasten death. When teaching about these topics, I challenge students to consider whether there are meaningful differences between practices like euthanasia, MAID, aggressive use of morphine, terminal sedation, or the withdrawal of ventilator support. Whether their differences are morally, ethically, or legally meaningful can be difficult to tease out. After recently watching a loved one, whom I call "Stephan," direct the time and manner of his death within hospice care in a state that does not allow MAID, I am less inclined than ever to believe that the differences are meaningful in a way the law should recognize.

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.