For, against, and beyond: healthcare professionals' positions on Medical Assistance in Dying in Spain.

BACKGROUND: In 2021, Spain became the first Southern European country to grant and provide the right to euthanasia and medically assisted suicide. According to the law, the State has the obligation to ensure its access through the health services, which means that healthcare professionals' participation is crucial. Nevertheless, its implementation has been uneven. Our research focuses on understanding possible ethical conflicts that shape different positions towards the practice of Medical Assistance in Dying, on identifying which core ideas may be underlying them, and on suggesting possible reasons for this disparity. The knowledge acquired contributes to understanding its complexity, shedding light into ambivalent profiles and creating strategies to increase their participation. METHODS: We conducted an exploratory qualitative research study by means of semi-structured interviews (1 h) with 25 physicians and nurses from primary care (12), hospital care (7), and palliative care (6), 17 women and 8 men, recruited from Madrid, Catalonia, and Andalusia between March and May 2023. Interviews were recorded, transcribed, and coded in Atlas.ti software by means of thematic and interpretative methods to develop a conceptual model. RESULTS: We identified four approaches to MAiD: Full Support (FS), Conditioned Support (CS), Conditioned Rejection (CR), and Full Rejection (FR). Full Support and Full Rejection fitted the traditional for and against positions on MAiD. Nevertheless, there was a gray area in between represented by conditioned profiles, whose participation cannot be predicted beforehand. The profiles were differentiated considering their different interpretations of four core ideas: end-of-life care, religion, professional duty/deontology, and patient autonomy. These ideas can intersect, which means that participants' positions are multicausal and complex. Divergences between profiles can be explained by different sources of moral authority used in their moral reasoning and their individualistic or relational approach to autonomy. CONCLUSIONS: There is ultimately no agreement but rather a coexistence of plural moral perspectives regarding MAiD among healthcare professionals. Comprehending which cases are especially difficult to evaluate or which aspects of the law are not easy to interpret will help in developing new strategies, clarifying the legal framework, or guiding moral reasoning and education with the aim of reducing unpredictable non-participations in MAID.

Interdisciplinary research approach based on a mixed-methods design to explore patient altruism at the end of life: a study protocol.

INTRODUCTION: In the end of life context, patients are often seen as somewhat passive recipients of care provided by health professionals and relatives, with little opportunity to be perceived as autonomous and active agents. Since studies show a very high prevalence of altruistic dispositions in palliative care patients, we strive to investigate the concept of patient altruism in a set of six interdisciplinary studies by considering three settings: (1) in the general palliative context-by studying to what extent patient altruism is associated with essential psychological outcomes of palliative care (subproject 1a), how altruism is understood by patients (subproject 1b) and how altruism expressed by patients is experienced by palliative care nurses (subproject 1c); (2) in two concrete decision-making contexts-advance care planning (subproject 2a) and assisted suicide (subproject 2b); and (3) through verbal and non-verbal patient communication in palliative care settings (subproject 3). METHODS AND ANALYSIS: Subproject 1a: a cross-sectional study using validated and standardised questionnaires. Subprojects 1b and 1c: a constructivist grounded theory method aiming at developing a novel theory from semistructured interviews in both patients and nurses. Subproject 2a: a thematic analysis based on (1) audio-recordings of advance care planning encounters and (2) follow-up semidirective interviews with patients and their relatives. Subproject 2b: a qualitative study based on thematic analysis of interviews with patients actively pursuing assisted suicide and one of their relatives.Subproject 3: a conversation analysis based on audio and video-recorded interactions in two settings: (1) palliative inpatient unit and (2) advance care planning discussions. ETHICS AND DISSEMINATION: The study project was approved by the Ethics Committees of the Canton of Vaud, Bern and Ticino (no: 2023-00088). In addition to participation in national and international conferences, each project will be the subject of two scientific publications in peer-reviewed journals. Additional publications will be realised according to result triangulation between projects. A symposium opened to professionals, patients and the public will be organised in Switzerland at the end of the project.

A Moratorium on the Euphemism MAID.

It is essential for high-quality health care for providers to adhere to the principle of truth telling, speaking with clarity and honesty. The euphemism medical aid in dying, MAID, is being mainstreamed in the medical literature by proponents of physician-assisted suicide and euthanasia. This trend is deleterious because MAID's proponents do not consistently express the meaning and intent of the practice, and the phrase downplays the fact that a provider is participating in the act of death for a patient. The euphemism blurs the differences between providing high-quality palliative care and participating in the death of a patient prior to a natural death. Some believe the term MAID is used exclusively for assisted suicide in patients with a terminal diagnosis with less than 6 months to live, when in fact it is being used for both assisted suicide and euthanasia and for patients who have no terminal diagnosis with potentially years to live. We are calling up on our colleagues to cease the use of this and other euphemisms in this ethically controversial practice. We recommend standardized language that accurately denotes the context and process. Provider Assisted Death by Prescription (PAD-P) and Provider Assisted Death by Administration (PAD-A) are terms that most accurately describe the process, taking into account who is prescribing or administering a lethal substance and the outcome of the actions. Literature that addresses this practice should be described as ending life literature. The standardized language needs to be used on death certificates so we can most accurately assess the impact that provider-assisted death is having on society. Emphasizing truth telling in morally controversial practices will foster trust among health care providers and with patients.

Expanding the Use of Continuous Sedation Until Death and Physician-Assisted Suicide.

The controversy over the equivalence of continuous sedation until death (CSD) and physician-assisted suicide/euthanasia (PAS/E) provides an opportunity to focus on a significant extended use of CSD. This extension, suggested by the equivalence of PAS/E and CSD, is designed to promote additional patient autonomy at the end-of-life. Samuel LiPuma, in his article, "Continuous Sedation Until Death as Physician-Assisted Suicide/Euthanasia: A Conceptual Analysis" claims equivalence between CSD and death; his paper is seminal in the equivalency debate. Critics contend that sedation follows proportionality protocols for which LiPuma's thesis does not adequately account. Furthermore, sedation may not eliminate consciousness, and as such LiPuma's contention that CSD is equivalent to neocortical death is suspect. We not only defend the equivalence thesis, but also expand it to include additional moral considerations. First, we explain the equivalence thesis. This is followed by a defense of the thesis against five criticisms. The third section critiques the current use of CSD. Finally, we offer two proposals that, if adopted, would broaden the use of PAS/E and CSD and thereby expand options at the end-of-life.

[PAL-PRAT study: Healthcare workers' knowledge and perception of palliative practices in a Cancer Center]. / Quelle connaissance et quelle perception ont les professionnels de santé d'un Centre de lutte contre le cancer à propos des pratiques palliatives encadrées par la loi Claeys-Leonetti : étude PAL PRAT.

INTRODUCTION: The issue of end-of-life care is the subject of a sensitive debate in French society, particularly regarding the possibility for certain patients to have access to medical assistance in dying. The aim of this study was to assess the knowledge and opinion of healthcare providers on the care practices for patients at the end of life, as well as to highlight any specificities in their discourse. METHOD: A survey of healthcare providers' opinions, composed of closed and open questions, that were analyzed using a lexicometric approach, was distributed in a cancer center. RESULTS: The results of the study reveal a good knowledge of the different procedures. Professionals considered that advance directives should be systematically collected; a majority of them differentiated euthanasia from deep continuous sedation and perceived the latter as a means of relieving patients' suffering without inducing death. The different procedures related to the active assistance in dying were known by a majority of professionals and the survey did not identify a dominant trend concerning the will to practice euthanasia if the legal framework allowed it. Half of the participants considered their training insufficient, indicating the need to fill this gap. DISCUSSION: This survey underlines the importance of training and support for the professionals caring for patients in palliative situation and their relatives in France.

Perspectives of Canadian health leaders on the relationship between medical assistance in dying and palliative and end-of-life care services: a qualitative study.

BACKGROUND: Medical assistance in dying (MAiD) was legalized in Canada in 2016, but coordination of MAiD and palliative and end-of-life care (PEOLC) services remains underdeveloped. We sought to understand the perspectives of health leaders across Canada on the relationship between MAiD and PEOLC services and to identify opportunities for improved coordination. METHODS: In this quantitative study, we purposively sampled health leaders across Canada with expertise in MAiD, PEOLC, or both. We conducted semi-structured interviews between April 2021 and January 2022. Interview transcripts were coded independently by 2 researchers and reconciled to identify key themes using content analysis. We applied the PATH framework for Integrated Health Services to guide data collection and analysis. RESULTS: We conducted 36 interviews. Participants expressed diverse views about the optimal relationship between MAiD and PEOLC, and the desirability of integration, separation, or coordination of these services. We identified 11 themes to improve the relationship between the services across 4 PATH levels: client-centred services (e.g., educate public); health operations (e.g., cultivate compassionate and proactive leadership); health systems (e.g., conduct broad and inclusive consultation and planning); and intersectoral initiatives (e.g., provide standard practice guidelines across health care systems). INTERPRETATION: Health leaders recognized that cooperation between MAiD and PEOLC services is required for appropriate referrals, care coordination, and patient care. They identified the need for public and provider education, standardized practice guidelines, relationship-building, and leadership. Our findings have implications for MAiD and PEOLC policy development and clinical practice in Canada and other jurisdictions.

Euthanasia and assisted suicide in neurological diseases: a systematic review.

OBJECTIVE: To identify the neurological diseases for which euthanasia and assisted suicide are most frequently requested in the countries where these medical procedures are legal and the specific characteristics of euthanasia in some of these diseases, and to show the evolution of euthanasia figures. METHODS: We conducted a systematic literature review. RESULTS: Dementia, motor neuron disease, multiple sclerosis, and Parkinson's disease are the neurological diseases that most frequently motivate requests for euthanasia or assisted suicide. Requests related to dementia constitute the largest group, are growing, and raise additional ethical and legal issues due to these patients' diminished decision-making capacity. In some countries, the ratios of euthanasia requests to all cases of multiple sclerosis, motor neuron disease, or Huntington disease are higher than for any other disease. CONCLUSIONS: After cancer, neurological diseases are the most frequent reason for requesting euthanasia or assisted suicide.

Legalisation of euthanasia and assisted suicide: advanced cancer patient opinions - cross-sectional multicentre study.

OBJECTIVES: The French government voted a new law in February 2016 called the Claeys-Leonetti Law, which established the right to deep and continuous sedation, confirmed the ban on euthanasia and ruled out physician-assisted suicide. The aim of this work was to gather the opinion of patients on continuous sedation and the legalisation of medical assistance in dying and to explore determinants associated with favourable and unfavourable opinions. METHODS: This was a French national prospective multicentre study between 2016 and 2020. RESULTS: 331 patients with incurable cancer suffering from locally advanced or metastatic cancer in 14 palliative care units were interviewed. 48.6% of participants expressed a favourable opinion about physician-assisted suicide and 27.2% an unfavourable opinion about its legalisation. Regarding euthanasia, 52% of patients were in favour of its legalisation. In univariate analysis, the only factor determining opinion was belief in God. CONCLUSIONS: While most healthy French people are in favour of legalising euthanasia, only half of palliative care patients expressed this opinion. Medical palliative care specialists were largely opposed to euthanasia. The only determining factor identified was a cultural factor that was independent of the other studied variables. This common factor was found in other studies conducted on cohorts from other countries. This study contributes to the knowledge and thinking about the impact of patients' personal beliefs and values regarding their opinions about euthanasia and assisted suicide. TRIAL REGISTRATION NUMBER: NCT03664856.

Medical assistance in dying when natural death is not reasonably foreseeable: Survey of providers' experiences with patients making track 2 requests.

OBJECTIVE: To describe clinicians' experiences with assessing patients making track 2 requests for medical assistance in dying (MAID) and providing MAID to such patients in the first 6 months after Canada amended relevant legislation in March 2021 to expand access to MAID. DESIGN: Online survey with closed and open-ended questions about clinicians' experiences with individual patients making track 2 MAID requests. SETTING: Canada. PARTICIPANTS: Doctors and nurse practitioners who were members of the Canadian Association of MAID Assessors and Providers. MAIN OUTCOME MEASURES: The most common reasons patients gave for making track 2 MAID requests and the challenges providers identified in doing these assessments. RESULTS: Twenty-three MAID providers submitted information about 54 patients who had made track 2 requests between March 17, 2021 and September 17, 2021. The most common diagnoses were chronic pain syndromes, affecting 28 patients (51.9%), and complex chronic conditions such as myalgic encephalomyelitis or chronic fatigue syndrome, affecting 8 patients (14.8%). The most common challenges providers reported were related to patients having concurrent mental illness, noted in 37 assessments (68.5%). In 8 cases (14.8%), providers faced challenges in finding experts to help with assessments. In 19 cases (35.2%), providers felt patients had not been offered all appropriate and available treatments, and in 9 cases (16.7%) providers encountered difficulties in finding such treatments for patients. CONCLUSION: Providers of MAID described many challenges in their experiences with patients making track 2 requests, including assessing individuals with concurrent mental illnesses, being uncertain that patients had been offered appropriate treatments prior to seeking MAID, and being unsure whether patients had seriously considered available treatments. Many providers experienced moral distress in attempting to balance patients' rights with what might be in patients' best interests. This is different from experiences providers have had with patients making track 1 requests, as most of these patients have end-stage malignancy or organ failure and seldom have unmet health care needs. This information could be used to enhance education and support for clinicians as they help patients with track 2 requests access their right to peaceful deaths.

Response to Medical Assistance in Dying, Palliative Care, Safety, and Structural Vulnerability.

This report, signed by >170 scholars, clinicians, and researchers in palliative care and related fields, refutes the claims made by the previously published Medical Assistance in Dying, Palliative Care, Safety, and Structural Vulnerability. That report attempted to argue that structural vulnerability was not a concern in the provision of assisted dying (AD) by a selective review of evidence in medical literature and population studies. It claimed that palliative care has its own safety concerns, and that "misuse" of palliative care led to reports of wrongful death. We and our signatories do not feel that the conclusions reached are supported by the evidence provided in the contested report. The latter concluded that the logical policy response would be to address the root causes of structural vulnerability rather than restrict access to AD. Our report, endorsed by an international community of palliative care professionals, believes that public policy should aim to reduce structural vulnerability and, at the same time, respond to evidence-based cautions about AD given the potential harm.

Caring for patients during voluntarily stopping of eating and drinking (VSED): experiences of a palliative care team in Germany.

BACKGROUND: Health-care professionals are confronted with patients who wish to end their lives through voluntarily stopping eating and drinking (VSED). During VSED, symptoms such as agitation, thirst or psychological distress may arise, thus making close medical accompaniment necessary. Dealing with these symptoms can put a high burden on palliative care teams. Furthermore, divergent perceptions of the ethical classification of VSED may lead to moral distress. The aim of this study was to assess the influence of experience gained over time on the burden of palliative care professionals while accompanying patients during VSED and to assess the perceptions of coping strategies. METHODS: This is a prospective single-centre study conducted at the Interdisciplinary Centre for Palliative Care at University Hospital Duesseldorf, Germany. At two points in time (T1, T2) one year apart, team members of all professions who were actively involved in the accompaniment were eligible to complete a pretested questionnaire. RESULTS: Team members perceived the symptom complex of psychological distress, anxiety, and agitation to be the most burdensome symptoms for the patients (T1: 28/49, 57.1%; T2: 33/59, 55.9%). Thirst was the second most observed symptom (T1: 17/49, 34.7%, T2: 19/59, 32.2%). These were also the most burdensome symptoms for individual team members. Most team members found there were no general moral concerns. There was a decrease in the perceived importance of support strategies such as ethical counselling (85.7% versus 63.6%). CONCLUSIONS: Accompanying patients during VSED is a challenge for health-care professionals. When comparing T2 to T1, less emphasis lies on the importance of ethical counselling or psychiatric assessment to build a foundation for the accompaniment. Moral and ethical concerns seem to play a minor role. More in-depth studies covering a bigger sample size as well as qualitative studies are needed.

Relatives' Experiences of Being Involved in Assisted Dying: A Qualitative Study.

Recent literature demonstrates an interdependence between relatives and healthcare providers throughout euthanasia processes. Yet, current guidelines and literature scarcely specify the interactions between healthcare providers and bereaved relatives. The aim of this work consisted of providing an insight into bereaved relatives' experiences (1) of being involved in euthanasia processes and (2) of their interactions with healthcare providers before, during, and after the euthanasia. The research process was guided by the principles of constructivist grounded theory. Nineteen Dutch-speaking bereaved relatives of oncological patients, who received euthanasia at home or in a hospital less than 24 months ago, participated via semi-structured interviews. These interviews were conducted between May 2021 and June 2022. Due to the intensity of euthanasia processes, relatives wanted to be involved as early as possible, in order to receive time, space, and access to professionals' support whilst preparing themselves for the upcoming loss of a family member with cancer. Being at peace with the euthanasia request facilitated taking a supportive attitude, subsequently aiding in achieving a serene atmosphere. A serene atmosphere facilitated relatives' grief process because it helped them in creating and preserving good memories. Relatives appreciated support from healthcare providers, as long as overinvolvement on their part was not occurring. This study advocates for a relational approach in the context of euthanasia and provides useful complements to the existing euthanasia guidelines.

[Selected legal aspects of end-of-life care : Euthanasia, palliative sedation and emergency medicine]. / Ausgewählte juristische Aspekte der Medizin am Lebensende : Sterbehilfe, palliative Sedierung und Notfälle.

The law distinguishes between several forms of intentional participation in life-shortening or life-ending acts ("euthanasia"). Therapy limitation is permitted or even required if the prerequisites for a medical intervention are no longer present. In contrast, active-direct killing (upon request) is categorically prohibited (§ 216 "Strafgesetzbuch" [StGB]). Considering the "fundamental right to self-determined dying", however, there is now a clear tendency to narrow the scope of punishable offences. This liberal "spirit of time" has already prevailed for assisted suicide, provided that it is carried out in a "freely responsible" manner. For pain therapy to reduce suffering, risks may be taken in light of the protection of life; however, here too, legitimization is required through the principle of actual or at least presumed consent. There are challenges in assessing and executing the patient's will in (suicidal) emergency situations, especially the adherence to autonomously made decisions on death.

Medical Aid in Dying.

As the nation's 75 million baby boomers enter into a new phase of their life, care for their aging parents, and contemplate their own mortality, many have come to realize that our end-of-life care system is hamstrung by outdated modes of dying. This chapter discusses the current status of medical aid in dying in the United States as a legal and medically recognized medical option for supporting patients at life's end.