Patient termination of a life-sustaining medical device: Suicide or natural death?

Medical technology has made tremendous strides in extending the lives of patients who have suffered organ failure. Machines can now replace the function of the kidneys, the heart, and other vital organs. Much has been written about a patient's right to refuse or direct the withdrawal of medical treatment, especially at the end of life, under the guise of "death with dignity." However, little attention has been paid to the situation where a patient elects to deactivate their life-sustaining medical device without a physician's involvement. This raises the challenging question of whether the patient's manner of death should be classified as suicide or natural. Surprisingly, common law, statutes, medical ethics, and public health practice are not in alignment on the answer. This article will explore the ramifications and far-reaching impact that such divergence has on the survivors and the medical community, as well as recommend corrective actions and practical approaches for the medical and legal practitioner.

Old Books, Warm Cookies, and Death With Dignity.

Family medicine physicians take care of patients and their families "from womb to tomb." This phrase is particularly apt in Oregon, where the Death with Dignity Act allows for terminally ill patients to end their lives with self-administered medications prescribed by a physician. This story chronicles my first experience caring for a patient under the Death with Dignity Act; that night of her death at home, surrounded by the warmth of her life and loved ones, opened my mind to the possibilities of what the patient-physician relationship entails, from the routine of meeting her family to the intimacy of assisting in her decision to die.

Neurology ethics at the end of life.

Ethical challenges in medical decision making are commonly encountered by clinicians caring for patients afflicted by neurological injury or disease at the end of life (EOL). In many of these cases, there are conflicting opinions as to what is right and wrong originating from multiple sources. There is a particularly high prevalence of impaired patient judgment and decision-making capacity in this population that may result in a misrepresentation of their premorbid values and goals. Conflict may originate from a discordance between what is legal or from stakeholders who view and value life and existence differently from the patient, at times due to religious or cultural influences. Promotion of life, rather than preservation of existence, is the goal of many patients and the foundation on which palliative care is built. Those who provide EOL care, while being respectful of potential cultural, religious, and legal stakeholder perspectives, must at the same time recognize that these perspectives may conflict with the optimal ethical course to follow. In this chapter, we will attempt to review some of the more notable ethical challenges that may arise in the neurologically afflicted at the EOL. We will identify what we believe to be the most compelling ethical arguments both in support of and opposition to specific EOL issues. At the same time, we will consider how ethical analysis may be influenced by these legal, cultural, and religious considerations that commonly arise.

Neurologic Diseases and Medical Aid in Dying: Aid-in-Dying Laws Create an Underclass of Patients Based on Disability.

Terminally ill patients in 10 states plus Washington, D.C. have the right to take prescribed medications to end their lives (medical aid in dying). But otherwise-eligible patients with neuromuscular disabilities (ALS and other illnesses) are excluded if they are physically unable to "self-administer" the medications without assistance. This exclusion is incompatible with disability rights laws that mandate assistance to provide equal access to health care. This contradiction between aid-in-dying laws and disability rights laws can force patients and clinicians into violating one or the other, potentially creating an underclass of patients denied medical care that is available to those with other (less physically disabling) terminal illnesses. The immediacy of this issue is demonstrated by a lawsuit in Federal court filed in August 2021, requesting assistance in self-administration for terminally ill patients with neuromuscular diseases. This paper discusses the background of this conflict, the ethical issues at the heart of the dilemma, and recommends potential remedies.

Research Progress of Inpatients’ Living Wills / 中国医学伦理学

By reviewing the necessity, current status of cognitive attitudes, influencing factors, and improvement strategies of inpatients’ living wills, this paper proposed to strengthen the publicity and promotion of living wills to advance the development of death with dignity, improve relevant influencing factors, and provide feasible solutions for living wills, and actively develop tools to assess the cognition and attitude of living wills, with a view to providing reference for further promoting the application of living wills in inpatients and improving related research.

"Respecting our patients' choices": making the organizational decision to participate in voluntary assisted dying provision: findings from semi-structured interviews with a rural community hospice board of management.

BACKGROUND: There is limited literature around how palliative care organizations determine the degree to which they will interface with voluntary assisted dying in jurisdictions where it is legal. The aim of this research was to describe the experience of the board of management of an Australian community-based hospice during their decision-making process around whether to support voluntary assisted dying in the facility, prior to the legislation coming into operation. METHODS: The Board considered this decision over ten meetings in 2020, during which time they received information on the legislation, relevant literature, feedback from workshops which included the community, comment from hospice founders, staff survey results and presentations by clinicians able to discuss the impact of voluntary assisted dying on palliative care services. Members were encouraged to make notes of their own experiences during this time. Following this, semi-structured interviews were conducted with seven of the nine board members. Interviews were audio-recorded and transcribed verbatim and analysed using conventional qualitative content analysis method. RESULTS: The board members experienced a sense of journey in reaching an overall decision, which was to allow full participation in voluntary assisted dying provision for inpatients. Themes based on the journey motif included: starting from a personal view; moving to a hospice perspective; exploring if voluntary assisted dying can be part of end-of-life care; awareness and assessment of risks to the Hospice; arriving at a common platform to vote on; factors facilitating a safe decision-making journey; and personal impact of the journey. CONCLUSIONS: The group highlighted several facilitators of a successful outcome including having adequate time, the availability of useful resources, sound board processes and a trusting culture. The study may provide support to other healthcare organisations as they face similar decisions triggered by legislative change.

Reflexiones sobre profesionalismo y muerte digna: ¿Condiciones vitales no disponibles?

este artículo de reflexión hace un llamado a retornar a la compasión y el profesionalismo médico que se han visto sensiblemente afectados por la pandemia. En el contexto de la pérdida de un familiar, los autores reflexionan sobre los medicamentos vitales no disponibles para aliviar el sufrimiento y el dolor de los pacientes que se encuentran al final de la vida. El texto invita a los pacientes a ejercer su derecho a la salud y a la muerte digna y hace un llamado a los lectores a pensar en la investigación e innovación como alternativas para enfrentar la coyuntura nacional de escasez de medicamentos y dispositivos médicos.

This reflective article calls for a return to compassion and medical professionalism that have been sensitively affected by the pandemic. In the context of bereavement, the authors reflect on the vital medications unavailable to alleviate the suffering and pain of patients at the end of life. The text invites patients to exercise their right to health and dignified death and calls on readers to think about research and innovation as alternatives to confront the national conjuncture of shortages of medicines and medical devices.

neste artigo de reflexão, pede-se um retorno à compaixão e ao profissionalismo médico que foram sensivelmente afetados pela pandemia da covid-19. No contexto do luto, os autores refletem sobre os medicamentos vitais indisponíveis para aliviar o sofrimento e a dor dos pacientes no final da vida. O texto convida os pacientes a exercerem seu direito à saúde e a uma morte digna, e convoca os leitores a pensarem em pesquisa e inovação como alternativas para enfrentar a escassez nacional de medicamentos e dispositivos médicos.

Being a safe place: a qualitative study exploring perceptions as to how a rural community hospice could respond to enactment of voluntary assisted dying legislation.

BACKGROUND: There is a lack of research to guide the implementation of voluntary assisted dying legislation within a hospice setting. Furthermore, there is limited published information related to the expectations of the community and staff to assist decision making regarding voluntary assisted dying in a community hospice. The aim of this study was to explore the expectations of staff, volunteers and members of the community as how a rural Australian community hospice could respond in relation to imminent enactment of Voluntary Assisted Dying legislation. METHODS: A total of 63 Hospice staff and volunteers and community members participated in 11 workshops. This qualitative study used the interpretive description method to analyse the workshop transcripts. RESULTS: While there was not a consensus view on community expectation, there was agreement among the participants for respect for a patient's individuality and choices. Furthermore, care offered in hospice needs to remain non-judgemental and patient focused regardless of whether voluntary assisted dying policy was implemented or not. Both opportunities and risks associated with implementation were identified by the participants. CONCLUSION: There was common ground around the respect for the dying person and the ideal of a "safe place" despite opposing views on what this may mean in practice. There is a need for clarity in organisational responses around policy, risk management, education, and staff support.

A Comparison of Physician-Assisted/Death-With-Dignity-Act Death and Suicide Patterns in Older Adult Women and Men.

OBJECTIVE: To examine Oregon's Death-with-Dignity-Act (DWDA) death and suicide patterns among women age 65 and older, relative to patterns among same-age men, as a way to assess DWDA's impact on older adult women, a group considered vulnerable. DESIGN: Oregon's 1998-2018 DWDA- and suicide-mortality rates and confidence intervals were calculated. RESULTS: Between 1998 and 2018 women age 65 and older represented 46% of DWDA deaths and 16.3% of suicides in their age group. Among women age 65 and older DWDA and suicide mortality increased whereas among same-age men DWDA deaths increased and suicides declined. DWDA deaths were the most common form (52.7%) of self-initiated death for older adult women, and firearm suicides (65.7%) for older adult men. CONCLUSION: Legalization has a substantial impact on older adult women's engagement in self-initiated death. In Switzerland and in Oregon, where assisted suicide/medical-aid-in-dying (MAID) is legal and where assisted-suicide/MAID and suicide comparative-studies have been conducted, older adult women avoid self-initiated death except when physician-approved. Older adult women's substantial representation among assisted-suicide/MAID decedents, relative to suicide, may be a clue of their empowerment to determine the time of their death, when hastened-death assistance is permitted; or of their vulnerability to seeking a medicalized self-initiated death, when in need of care.

PROSPECTS OF EUTHANASIA LEGAL REGULATION IN UKRAINE.

OBJECTIVE: The aim of this article is to explore the ways of euthanasia regulation and to propose the most effective one. PATIENTS AND METHODS: Materials and methods: The authors of the article used the methods of analysis and synthesis, a comparative legal method. The scientific literature is evaluated and analyzed along with the experience of European countries, data of Ukrainian and international organizations and the results of scientific researches. CONCLUSION: Conclusions: the understanding of euthanasia should be reviewed in terms of the possibility in exceptional cases of its executing for terminally ill person. This is an inherent human right. However, it is established that the right to dispose of his life belongs exclusively to the bearer of this right and it cannot be delegated.

Physicians' End of Life Discussions with Patients: Is There an Ethical Obligation to Discuss Aid in Dying?

Since Oregon implemented its Death with Dignity Act, many additional states have followed suit demonstrating a growing understanding and acceptance of aid in dying (AID) processes. Traditionally, the patient has been the one to request and seek this option out. However, as Death with Dignity acts continue to expand, it will impact the role of physicians and bring up questions over whether physicians have the ethical obligation to facilitate a conversation about AID with patients during end of life discussions. Patients have the right to make informed decisions about their health, which implies that physicians have an obligation to discuss with and inform patients of the options that will accomplish the patients' goals of care. We will argue that physicians have an ethical obligation to inform certain patients about AID (in qualifying states) during end of life care discussions. We will also address what this obligation encompasses and explore guidelines of when and how these conversations should occur and proceed. Earlier guidelines, presented by various palliative care and ethics experts, for proceeding with such conversations have mostly agreed that the discussion of hospice and end of life care with patients should be initiated early and that the individual goals of a patient during the remaining duration of life should be thoroughly examined before discussion of appropriate options. In discussing AID, physicians should never recommend but inform patients about the basics so that they can make an informed decision. If patients express further interest in AID, the physician should open up the dialogue to address the reasoning behind this decision versus other possible treatments to ensure that patients clearly comprehend the process and implications of their decision. Ultimately, any end of life choice should be made by patients with the full capacity to express what they envision for the remaining duration of life and to comprehend the advantages and disadvantages of all the possible options.

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.

Mortal Responsibilities: Bioethics and Medical-Assisted Dying.

A culture of dying characterized by end-of-life care provided by strangers in institutional settings and diminished personal control of the dying process has been a catalyst for the increasing prevalence of legalized physician-assisted dying in the United States and medically-assisted dying in Canada. The moral logic of the right to die that supports patient refusals of life-extending medical treatments has been expanded by some scholarly arguments to provide ethical legitimation for hastening patient deaths either through physician-prescribed medications or direct physician administration of a lethal medication. The concept of medical-assisted dying increases the role and power of physicians in ending life and allows patients who are not terminally ill, or who have lost decision-making capacity, or who are suffering from a irremediable medical condition to have access to medical procedures to hasten death. This extended moral logic can be countered by ethical objections regarding the integrity of the patient-physician relationship and last resorts in ending life, professional concerns about medicalization and a diminished identity of medicine as a healing profession, and social responsibilities to provide equal access to basic health care and to hospice care.

The spectrum of end of life care: an argument for access to medical assistance in dying for vulnerable populations.

Medical assistance in dying (MAiD) was legalized by the Supreme Court of Canada in June 2016 and became a legal, viable end of life care (EOLC) option for Canadians with irremediable illness and suffering. Much attention has been paid to the balance between physicians' willingness to provide MAiD and patients' legal right to request medically assisted death in certain circumstances. In contrast, very little attention has been paid to the challenge of making MAiD accessible to vulnerable populations. The purpose of this paper was to examine the extant literature and resources that are available on the provision of MAiD in Canada. We found that the provision of EOLC in Canada offers insufficient access to palliative and EOLC options for Canadians and that vulnerable Canadians experience disproportional barriers to accessing these already limited resources. Consequently, we argue that palliative care, hospice care and MAiD must be considered a spectrum of EOLC that is inclusive and accessible to all Canadians. We conclude by imploring Canadian healthcare professionals, policy makers and legislators to consider MAiD as a viable EOLC option for all Canadians.

Court decisions and legal considerations about the withdrawal of the life-prolonging medical care

The Supreme Court decision made on May 21, 2009 about the withdrawal of futile life-prolonging medical care from a persistently vegetative patient provided a legal basis for patients to consent to death with dignity, and also spurred a lively debate in Korea. The legal grounding of this decision was based on the principles of human dignity, worth, and the right to pursue happiness articulated in the Article 10 of the Constitution. The Death with Dignity Act was legislated to regulate decisions about life-prolonging medical care on February 3, 2016, after extensive debate and a focus on consensus that led to two revisions. However, the issue has not been completely resolved. First, the definition of the process of dying is unclear, because the points that determine whether a patient is dying are different from a simple assessment of whether an artificial ventilator should be attached or detached. Second, the purpose of this law is the protection of human dignity, worth, and the right to pursue happiness. However, nutrition, fluids, and oxygen must continue to be supplied, even after cessation of life-prolonging medical care. Is providing a continuous supply of nutrition, fluids, and oxygen a reasonable way to satisfy the goals of Article 10 of the Constitution? Third, if the withdrawal of life-prolonging medical care is possible based on the family's agreement without the patient's input, what is the legal value of advance directives? In conclusion, it may be necessary to partially revise the law regulating decisions on the withdrawal of life-prolonging medical care through further debate.

Communication about Death and Confidence Levels concerning Death-Related Issues among Koreans

BACKGROUND: This study investigated the current status of communication about death and confidence levels concerning death-related issues among Korean adults.METHODS: A survey was conducted to ascertain the frequency of death related communication, factors promoting and impeding such communication, and confidence levels concerning death-related issues. Data of 112 participants who completed the survey were analyzed using descriptive statistics, a chi square test, and multiple logistic regression.RESULTS: More than half of the participants (52.7%–84.0%) appeared to have infrequent (never/at least one) conversations about death or death-related issues. Owing to socio-cultural aspects, death-related communication was considered a taboo or an unpleasant topic of conversation. Additionally, indifference toward death inhibited people from communicating; however, personal experiences of death or morbidity and favorable social contexts promoted communication. Overall, the confidence levels concerning death-related issues was low. Only 17.9%–32.2% of the participants were confident/very confident about their preferences concerning death-related issues. The more people talked about death, the more likely they were to develop a confident attitude toward death-related issues (odds ratio, 3.45; 95% confidence interval, 1.37–8.69).CONCLUSION: This study confirmed that communication about death is being withheld among Koreans, and this could possibly lower their level of confidence regarding death-related issues. To achieve death with dignity, a ‘death culture’ needs to be promoted alongside legislation and infrastructure.

Listening to the family's voice: evaluation of a tool to improve symptom control and communication.

BACKGROUND:: Acute hospitals provide a high proportion of end-of-life care but some families experience poor communication with clinical staff. AIM:: To evaluate the use of the Family's Voice diary communication tool across nine healthcare settings. METHODS:: A mixed method practice development approach was used incorporating: an audit of the usage of Family's Voice; collation and analysis of written comments; and collation of written feedback from the principal investigators at data collection sites. FINDINGS:: There were 112 completed diaries. Families rated pain and vomiting as well controlled, but agitation and breathlessness were difficult to control. Families were positive about care provided to the patients and themselves. Ten themes were identified from analysis of the families' written comments that echoed national concerns. CONCLUSION:: Evidence for the utility of the diary is building. Future work could focus on strategies for embedding the diary into routine care for all end-of-life patients.

Physician-Assisted Suicide and Midwest Social Workers: Where Do They Stand?

Physician-assisted suicide (PAS) is explicitly legal in five states and by court decision in one. Legislative bills have been introduced in other states including Minnesota, Iowa, and Wisconsin. This quantitative study was designed to understand Midwest, hospice and palliative care at end-of-life social workers' attitudes toward PAS, preferred terminology, perception of preparedness for the implementation, and awareness of PAS legislation in their state. Sixty-two social workers from Minnesota, Iowa, and Wisconsin completed an anonymous online survey. The results indicated that over one-half of the participants supported PAS legislation and is consistent with previous research on social workers across the country. While there was a range of perceived preparedness for implementation, a majority felt moderately to very prepared. Professional and personal values as well as professional experience influenced their perceived preparedness. Few social workers had accurate awareness of PAS legislation in their state or had attended workshops/events for further education or as a policy advocate. To practice competently and advocate at all levels of practice, hospice and palliative care at end-of-life social workers' need to understand their own attitudes and values toward PAS and pursue additional education around this ethical issue.

O direito à morte digna da criança hospitalizada: ações de enfermagem / The hospitalized child's right to a dignified death: nursing actions

Diante da complexidade dos aspectos que envolvem a assistência de enfermagem à criança em momento final de vida no cenário da Unidade de Internação Pediátrica, objetivou-se descrever as ações de enfermagem frente ao direito à morte digna da criança hospitalizada; analisar as (im)possibilidades para promover o direito à morte digna da criança hospitalizada; e discutir as implicações das ações de enfermagem para a promoção do direito à morte digna da criança hospitalizada. Estudo qualitativo, baseado no conceito de morte digna, com 16 membros da equipe de enfermagem, que atuam em uma Unidade de Internação Pediátrica, por meio da Entrevista Não Diretiva em Grupo. Os depoimentos foram analisados de acordo com a análise temática. Resultados: As ações de enfermagem minimizam o sofrimento por meio de medidas farmacológicas e não farmacológicas que aliviam a dor, o desconforto físico e respiratório, tornam o ambiente mais acolhedor com a implementação de estratégias que buscam resguardar a privacidade, e ampliam os acompanhantes da criança. A morte digna é possível quando a criança e família são preparadas para vivenciar esse momento final da vida da criança; a decisão é compartilhada entre criança, família e equipe; existe vínculo e confiança com a equipe; os aspectos religiosos são respeitados; o quadro de irreversibilidade da criança é reconhecido, e não há transferência para a Unidade de Terapia Intensiva Pediátrica, nem tampouco a realização de medidas invasivas e dolorosos para prolongar a vida da criança. Esses fatores garantem fortalecimento da família; princípios bioéticos; aceitação da morte da criança e atenuação dos aspectos estressores. Conclusões: A equipe de enfermagem promove a morte digna da criança baseada em convicções individuais de dignidade, uma vez que ainda não existem modelos de cuidado à criança no momento final de vida e morte, na unidade de internação pediátrica, cenário do estudo. As ações contribuem para criação de novos modelos de cuidado à criança que resguardem prioritariamente a dignidade humana no momento da morte da criança.

In view of the complexity of the aspects that involve nursing assistance to the child at the end of life in the scenario of the Pediatric Internment Unit, the objective was to describe the nursing actions regarding the right to a decent death of hospitalized children; to analyze the (im) possibilities for promoting the right to a decent death in hospitalized children; and discuss the implications of nursing actions for the promotion of the right to a dignified death in hospitalized children. A qualitative study based on the concept of dignified death, with 16 members of the nursing team, who work in a Pediatric Internment Unit, through the Non-Directive Group Interview. The statements were analyzed according to the thematic analysis. Results: Nursing actions minimize suffering through pharmacological and non-pharmacological measures that alleviate pain, physical and respiratory discomfort, make the environment more welcoming with the implementation of strategies that seek to protect privacy, and expand the child's companions. Decent death is possible when the child and family are prepared to experience this final moment of the child's life; the decision is shared between child, family and team; there is a bond and trust with the team; religious aspects are respected; the irreversibility of the child is recognized, and there is no transfer to the Pediatric Intensive Care Unit, nor any invasive and painful measures to prolong the life of the child. These factors ensure family strengthening; bioethical principles; acceptance of the child's death and attenuation of the stressors. Conclusions: The nursing team promotes the dignified death of the child based on individual convictions of dignity, since there are still no models of child care at the final moment of life and death in the pediatric hospitalization unit, the study scenario. The actions contribute to the creation of new models of child care that safeguard human dignity at the moment of the child's death.