"What Is the Most Important to Them?" Swiss Health Care Proxies, Nurses, and Physicians Discuss Planning Practices for Aged Care Residents Who No Longer Have Medical Decision-Making Capacity.

INTRODUCTION: Multiple morbidities, including neurodegenerative diseases such as dementia, which result in diminished decision-making capacity (DMC), make care and care planning complicated for residential aged care facility (RACF) residents. While advance care planning has been highlighted as essential for ensuring that this population receives care that is coherent with their wishes, there are few models specifically designed for this population. This study aimed to explore the current practices for care planning and decision-making for Swiss RACF residents who no longer have medical DMC. METHODS: Semi-structured focus groups were conducted with 23 nurses in three RACFs and with 13 physicians working in 9 RACFs. Semi-structured interviews were conducted with 18 health care proxies of 16 residents without DMC. Thematic analysis was conducted to identify the most salient themes across the dataset. RESULTS: Analyses identified many collaborative processes between nurses, physicians, and health care proxies including family meetings, reconstructing residents' presumed will, making anticipatory decisions, and documenting these decisions. These processes were, however, highly variable and differed between institutions and between residents within each facility, with a lack of standardization. This variability was highlighted to be problematic for information transmission within facilities and in case of hospital or facility transfer. CONCLUSIONS: These results highlight the importance of standardized yet flexible processes of care planning for people who no longer have DMC and provide insights for the development of such models specifically designed to address this problem.

Equity in Clinical Care and Research Involving Persons with Disorders of Consciousness.

People with disorders of consciousness (DoC) are characteristically unable to synchronously participate in decision-making about clinical care or research. The inability to self-advocate exacerbates preexisting socioeconomic and geographic disparities, which include the wide variability observed across individuals, hospitals, and countries in access to acute care, expertise, and sophisticated diagnostic, prognostic, and therapeutic interventions. Concerns about equity for people with DoC are particularly notable when they lack a surrogate decision-maker (legally referred to as "unrepresented" or "unbefriended"). Decisions about both short-term and long-term life-sustaining treatment typically rely on neuroprognostication and individual patient preferences that carry additional ethical considerations for people with DoC, as even individuals with well thought out advance directives cannot anticipate every possible situation to guide such decisions. Further challenges exist with the inclusion of people with DoC in research because consent must be completed (in most circumstances) through a surrogate, which excludes those who are unrepresented and may discourage investigators from exploring questions related to this population. In this article, the Curing Coma Campaign Ethics Working Group reviews equity considerations in clinical care and research involving persons with DoC in the following domains: (1) access to acute care and expertise, (2) access to diagnostics and therapeutics, (3) neuroprognostication, (4) medical decision-making for unrepresented people, (5) end-of-life decision-making, (6) access to postacute rehabilitative care, (7) access to research, (8) inclusion of unrepresented people in research, and (9) remuneration and reciprocity for research participation. The goal of this discussion is to advance equitable, harmonized, guideline-directed, and goal-concordant care for people with DoC of all backgrounds worldwide, prioritizing the ethical standards of respect for autonomy, beneficence, and justice. Although the focus of this evaluation is on people with DoC, much of the discussion can be extrapolated to other critically ill persons worldwide.

Patient altruism at the end of life: A scoping review.

OBJECTIVES: The concept of altruism is evidenced in various disciplines but remains understudied in end-of-life (EOL) contexts. Patients at the EOL are often seen as passive recipients of care, whereas the altruism of professionals and families receives more research and clinical attention. Our aim was to summarize the state of the scientific literature concerning the concept of patient altruism in EOL contexts. METHODS: In May 2023, we searched 11 databases for scientific literature on patient altruism in EOL contexts in consultation with a health information specialist. The scoping review is reported using the PRISMA checklist for scoping reviews. We used a data charting form to deductively extract data from the selected articles and then mapped data into 4 themes related to our research questions: how authors describe and employ the concept of patient altruism; expressions of patient altruism; consequences of patients' altruistic acts; and possible interventions fostering patient altruism. RESULTS: Excluding duplicates, 2893 articles were retrieved; 33 were included in the final review. Altruism was generally considered as an act or intention oriented toward the benefit of a specific (known) or non-specific (generic) recipient. Patients expressed altruism through care and support, decisions to withhold treatment or actively hasten death, and engagement in advance care planning. Consequences of altruism were categorized in patient-centered (contribution to meaning in life and quality of life), non-patient-centered (leaving a positive impact and saving money), and negative consequences (generating feelings of guilt, exposing individuals with low self-esteem). Interventions to encourage altruism comprised specific interventions, providing opportunities to plan for future care, and recognizing and respecting the patients' altruistic motivations. SIGNIFICANCE OF RESULTS: We identified heterogeneous and limited research conceptualization of patient altruism and its operationalization in palliative care settings. A deeper conceptual, empirical, and theoretical exploration of patient altruism in EOL is necessary.

[Transidentites : the relevance of involving psychiatrists]. / Transidentités : pertinence de l'implication des psychiatres.

Psychiatrists play a crucial role in evaluating requests and treatment indications for individuals experiencing gender incongruence, while also providing support throughout the transition process. Their work involves addressing both the psychological and somatic aspects of this journey, facilitating the profound identity changes it entails.

Les psychiatres psychothérapeutes jouent un rôle essentiel pour évaluer les demandes et les indications au traitement des personnes souffrant d'incongruence de genre, et les accompagner dans leur parcours de transition. Leur travail permet d'intégrer les enjeux psychologiques et somatiques de ce cheminement et de soutenir les remaniements identitaires profonds qu'il implique.

Physicians' attitudes towards ethical issues and end-of-life decision-making for pediatric patients with unresponsive wakefulness syndrome: An international survey.

AIM: We examined physicians' perspectives on the mental capabilities of pediatric patients with unresponsive wakefulness syndrome (UWS) and their attitudes towards limiting life-sustaining treatment (LST) in an international context. METHOD: A questionnaire survey was conducted among 267 neuropediatricians, practicing in 65 countries. Comparisons were made according to the Human Development Index (HDI) of the countries. The Idler Index of Religiosity was applied to determine religiosity. RESULTS: Participants from countries with a very high HDI were generally more favorable to limiting LST (p < 0.001), specifically cardiopulmonary resuscitation (p = 0.021), intubation/ventilation (p = 0.014), hemodialysis/hemofiltration (p < 0.001), and antibiotic therapy (p < 0.001). Treatment costs that were too high had a weaker influence on their decisions (p < 0.001). Participants who found it never ethically justifiable to limit LST had a higher mean Idler Index of private (p = 0.001) and general (p = 0.020) religiosity and were less satisfied with treatment decisions (p < 0.001) and the communication during the process (p = 0.016). INTERPRETATION: The perspectives towards limiting LST for pediatric patients with UWS are markedly different between physicians from countries with very high and lower HDIs.

'How is it possible that at times we can be physicians and at times assistants in suicide?' Attitudes and experiences of palliative care physicians in respect of the current legal situation of suicide assistance in Switzerland.

INTRODUCTION: Switzerland lacks specific legal regulation of assistance in suicide. The practice has, however, developed since the 1980s as a consequence of a gap in the Swiss Criminal Code and is performed by private right-to-die organisations. Traditionally, assistance in suicide is considered contrary to the philosophy of palliative care. Nonetheless, Swiss palliative care physicians regularly receive patient requests for suicide assistance. Their attitudes towards the legal regulations of this practice and their experience in this context remain unclear. OBJECTIVES: Our study aimed to explore and describe the attitudes and experiences of Swiss palliative care physicians concerning the legal situation of suicide assistance. METHODS: In 2019, we performed an exploratory interview study with 12 Swiss palliative care physicians on palliative sedation as an alternative to assisted suicide. In this paper, we present the results that emerged from a thematic subanalysis of the data. RESULTS: Participants stated that assistance in suicide and palliative care are based on opposing philosophies, but they admitted a shift in paradigm over the last years in the sense that one practice does not necessarily exclude the other. They reported various roles in suicide assistance and considered that the current activities of Swiss right-to-die organisations were problematic and needed to be regulated by law. DISCUSSION AND CONCLUSION: These results could enrich national and international reflection on suicide assistance in the context of palliative care by reducing confusion between the two practices and strengthening the confidence of patients and their relatives.

Introducing "A Question That Might, Perhaps, Scare you": How Geriatric Physicians Approach the Discussion About Cardiopulmonary Resuscitation with Hospitalized Patients.

Decisions about the relevance of life-sustaining treatment, such as cardiopulmonary resuscitation (CPR), are commonly made when a patient is admitted to the hospital. This article aims to refine our understanding of how discussions about CPR are introduced, to identify and classify the components frequently occurring in these introductions, and discuss their implications within the overarching activity (discussing CPR). We recorded 43 discussions about CPR between physicians and patients, taking place during the admission interview. We applied an inductive qualitative content analysis and thematic analysis to all the encounter content from the launch of the conversation on CPR to the point at which the physician formulated a question or the patient an answer. We identified this part of the encounter as the "introduction." This systematic method allowed us to code the material, develop and assign themes and subthemes, and quantify it. We identified four major themes in the introductions: (i) agenda setting; (ii) circumstances leading to CPR (subthemes: types of circumstances, personal prognostics of cardiac arrest); (iii) the activity of addressing CPR with the patient (subthemes: routine, constrain, precedence, sensitivity); and (iv) mentioning advance directives. Our findings reveal the elaborate effort that physicians deploy by appealing to combinations of these themes to account for the need to launch conversations about CPR, and highlight how CPR emerges as a sensitive topic.

Ethics Along the Continuum of Research Involving Persons with Disorders of Consciousness.

Interest in disorders of consciousness (DoC) has grown substantially over the past decade and has illuminated the importance of improving understanding of DoC biology; care needs (use of monitoring, performance of interventions, and provision of emotional support); treatment options to promote recovery; and outcome prediction. Exploration of these topics requires awareness of numerous ethics considerations related to rights and resources. The Curing Coma Campaign Ethics Working Group used its expertise in neurocritical care, neuropalliative care, neuroethics, neuroscience, philosophy, and research to formulate an informal review of ethics considerations along the continuum of research involving persons with DoC related to the following: (1) study design; (2) comparison of risks versus benefits; (3) selection of inclusion and exclusion criteria; (4) screening, recruitment, and enrollment; (5) consent; (6) data protection; (7) disclosure of results to surrogates and/or legally authorized representatives; (8) translation of research into practice; (9) identification and management of conflicts of interest; (10) equity and resource availability; and (11) inclusion of minors with DoC in research. Awareness of these ethics considerations when planning and performing research involving persons with DoC will ensure that the participant rights are respected while maximizing the impact and meaningfulness of the research, interpretation of outcomes, and communication of results.

"Life goes on": Perspectives on the will to live from residents of Swiss long-term care facilities.

OBJECTIVES: While there is a growing body of literature on the wish to die in older patients, there is little research about their will to live. Exploring the subjective will to live (WTL) offers valuable insights into the patients' resources and motivations, which could help improving geriatric palliative care. The aim of this study was to examine, in long-term care facilities (LTCF), residents' definitions of and factors influencing their WTL. METHODS: Twenty residents (mean age 85.8 ± 10.3 years, 70% women) of 3 Swiss LTCFs gave informed consent and participated in semi-structured interviews about their WTL. Interviews were audio-recorded and transcribed verbatim. Thematic analysis was conducted to identify recurrent themes (40% double coded). RESULTS: The majority of residents reported that they had not thought about the WTL. Nevertheless, they had no difficulty in describing it as innate in their lives. They spontaneously mentioned factors that contributed to their WTL, classified into 5 themes: (1) relationships - primarily with family and health professionals, secondarily with other residents; (2) living situation - the LTCF as a necessary place providing care, constant professional presence, and security, yet necessitates inconveniences such as loss of independence; (3) personality factors - positive outlook on life or spirituality; (4) engagement in routines - organized activities and individual daily routines; and (5) health status - primarily related to functional health. SIGNIFICANCE OF RESULTS: Examining WTL provides important insights into elements that are essential to take into account in planning care and promoting well-being in LTCF residents. The themes identified provide important starting points for improving life in LTCFs.

Inappropriate Involvement? Presenting Empirical Insight into the Preparation Phase of Advance Directives of Persons Living with Dementia Under German Legislation.

The scholarly debate on advance directives (ADs) in the context of dementia is mainly built around ethical arguments. Empirical studies that shed light into the realities of ADs of persons living with dementia are few and far between and too little is known about the effect of national AD legislation on such realities. This paper offers insight into the preparation phase of ADs according to German legislation in the context of dementia. It presents results from a document analysis of 100 ADs and from 25 episodic interviews with family members. Findings show that drafting an AD involves family members and different professionals in addition to the signatory, whose cognitive impairment differed considerably at the time of preparing the AD. The involvement of family members and professionals is at times problematic, which prompts the question of how much and what kind of involvement of others turns an AD of a person living with dementia into an AD about a person living with dementia. The results invite policy makers to critically review legislation on ADs from the perspective of cognitively impaired persons, who might find it difficult to protect themselves from inappropriate involvement when completing an AD.

Dimensions of end-of-life preferences in the Swiss general population aged 55+.

BACKGROUND: understanding end-of-life preferences in the general population and how they are structured in people's minds is essential to inform how to better shape healthcare services in accordance with population expectations for their end of life and optimise communication on end-of-life care issues. OBJECTIVE: explore key dimensions underlying end-of-life preferences in a nationally representative sample of adults aged 55 and over in Switzerland. METHODS: respondents (n = 2,514) to the Swiss version of the Survey of Health, Ageing and Retirement in Europe assessed the importance of 23 end-of-life items on a 4-point Likert scale. The factorial structure of the underlying end-of-life preferences was examined using exploratory structural equation modelling. RESULTS: four dimensions underlying end-of-life preferences were identified: a medical dimension including aspects related to pain management and the maintenance of physical and cognitive abilities; a psychosocial dimension encompassing aspects related to social and spiritual support; a control dimension addressing the need to achieve some control and to put things in order before death; and a burden dimension reflecting wishes not to be a burden to others and to feel useful to others. CONCLUSION: highlighting the multi-dimensionality of end-of-life preferences, our results reaffirm the importance of a holistic and comprehensive approach to the end of life. Our results also provide a general framework that may guide the development of information and awareness campaigns on end-of-life care issues in the general population, informational materials and guidelines to support healthy individuals in end-of-life thinking and planning, and advance directive templates appropriate for healthy individuals.

How should health care providers inform about palliative sedation? A qualitative study with palliative care professionals.

OBJECTIVE: In Switzerland, palliative sedation consists of using sedatives to relieve terminally ill patients. It is divided into several steps, with one of them consisting of informing patients and relatives about the procedure. In the current recommendations, there is a lack of orientation about how and when this discussion should take place. Hence, we aim to explore perceptions and experiences of palliative care professionals regarding these questions. METHODS: Qualitative semi-structured interviews with five physicians and five nurses working in specialised palliative care were conducted. They were then analysed with thematic analysis. RESULTS: Results showed a uniformity around definition, goals and indications of palliative sedation. However, there was a lack of consistency regarding the process of delivering this information to patients and relatives. Finally, some participants strongly opposed the idea of systematically informing patients in specialised palliative care, while others were more divided on this question. CONCLUSION: Despite a common understanding of the concept of palliative sedation, there is no standard practice when informing patients on palliative sedation among palliative care professionals. Therefore, this study demonstrates the need for further guidelines on this question and calls for a better understanding and knowledge of palliative sedation among health professionals outside palliative care.

Suffering is not enough: Assisted dying for people with mental illness.

Persons with mental disorders who are resistant to evidence-based treatment can be referred to as patients with severe and persistent mental illness (SPMI). Some patients with SPMI develop a strong wish for assisted dying. Switzerland has the longest history of non-medicalized assisted dying, which is considered a civil right even in non-pathological situations. Public debate in Switzerland about the issue of suffering in the context of assisted dying is current and ongoing. The Swiss Academy of Medical Sciences recently revised its end-of-life policy and specified intolerable suffering due to severe illness or functional limitations (and acknowledged as such by a physician) as a core criterion for assisted dying. We argue that suffering is a necessary but insufficient condition for assisted dying, and that the criteria should also include decision-making capacity and refractoriness of suffering. We further contend that suffering is a subjective experience that can only be quantified by the patient and cannot be objectively compared across individuals. Some patients with SPMI and refractory suffering who maintain decision-making capacity will meet the criteria for assisted dying. We advocate for palliative psychiatric care that relinquishes any disease-modifying therapy, accepts limited survival chances, and focuses on measures that enhance the patient's quality of life, understood in a very broad sense beyond only health-related quality of life. This approach should also relieve suffering as much as possible while remaining open to the possibility of assisted dying following conscientious assessment of the criteria.

Decision-making ethics in regards to life-sustaining interventions: when physicians refer to what other patients decide.

BACKGROUND: Health decisions occur in a context with omnipresent social influences. Information concerning what other patients decide may present certain interventions as more desirable than others. OBJECTIVES: To explore how physicians refer to what other people decide in conversations about the relevancy of cardio-pulmonary resuscitation (CPR) or do-not-attempt-resuscitation orders (DNAR). METHODS: We recorded forty-three physician-patient admission interviews taking place in a hospital in French-speaking Switzerland, during which CPR is discussed. Data was analysed with conversation analysis. RESULTS: Reference to what other people decide in regards to CPR is used five times, through reported speech. The reference is generic, and employed as a resource to deal with trouble encountered with the patient's preference, either because it is absent or potentially incompatible with the medical recommendation. In our data, it is a way for physicians to present decisional paths and to steer towards the relevancy of DNAR orders ("Patients tell us 'no futile care'"). By calling out to a sense of membership, it builds towards the patient embracing norms that are associated with a desirable or relevant social group. CONCLUSIONS: Introducing DNAR decisions in terms of what other people opt for is a way for physicians to bring up the eventuality of allowing natural death in a less overt way. Formulating treatment choices in terms of what other people do has implications in terms of supporting autonomous and informed decision making, since it nudges patients towards conformity with what is presented as the most preferable choice on the basis of social norms.

Ethics Priorities of the Curing Coma Campaign: An Empirical Survey.

BACKGROUND: The Curing Coma Campaign (CCC) is a multidisciplinary global initiative focused on evaluation, diagnosis, treatment, research, and prognostication for patients who are comatose due to any etiology. To support this mission, the CCC Ethics Working Group conducted a survey of CCC collaborators to identify the ethics priorities of the CCC and the variability in priorities based on country of practice. METHODS: An electronic survey on the ethics priorities for the CCC was developed using rank-choice questions and distributed between May and July 2021 to a listserv of the 164 collaborators of the CCC. The median rank for each topic and subtopic was determined. Comparisons were made on the basis of country of practice. RESULTS: The survey was completed by 93 respondents (57% response rate); 67% practiced in the United States. On the basis of respondent ranking of each topic, the prioritization of ethics topics across respondents was as follows: (1) clinical care, (2) diagnostic definitions, (3) clinical research, (4) implementation/innovation, (5) family, (6) data management, (7) public engagement/perceptions, and (8) equity. Respondents who practiced in the United States were particularly concerned about public engagement, the distinction between clinical care and research, disclosure of results from clinical research to families, the definition of "personhood," and the distinction between the self-fulfilling prophecy/nihilism and medical futility. Respondents who practiced in other countries were particularly concerned about diagnostic modalities for clinical care, investigational drugs/devices for clinical research, translation of research into practice, and the definition of "minimally conscious state." CONCLUSIONS: Collaborators of the CCC considered clinical care, diagnostic definitions, and clinical research the top ethics priorities of the CCC. These priorities should be considered as the CCC explores ways to improve evaluation, diagnosis, treatment, research, and prognostication of patients with coma and associated disorders of consciousness. There is some variability in ethics priorities based on country of practice.

Adapting to a New Normal After Severe Acute Brain Injury: An Observational Cohort Using a Sequential Explanatory Design.

OBJECTIVES: Treatment decisions following severe acute brain injury need to consider patients' goals-of-care and long-term outcomes. Using family members as respondents, we aimed to assess patients' goals-of-care in the ICU and explore the impact of adaptation on survivors who did not reach the level of recovery initially considered acceptable. DESIGN: Prospective, observational, mixed-methods cohort study. SETTING: Comprehensive stroke and level 1 trauma center in Pacific Northwest United States. PARTICIPANTS: Family members of patients with severe acute brain injury in an ICU for greater than 2 days and Glasgow Coma Scale score less than 12. MEASUREMENTS AND MAIN RESULTS: At enrollment, we asked what level of physical and cognitive recovery the patient would find acceptable. At 6 months, we assessed level of recovery through family surveys and chart review. Families of patients whose outcome was below that considered acceptable were invited for semistructured interviews, examined with content analysis. RESULTS: For 184 patients, most family members set patients' minimally acceptable cognitive recovery at "able to think and communicate" or better (82%) and physical recovery at independence or better (66%). Among 170 patients with known 6-month outcome, 40% had died in hospital. Of 102 survivors, 33% were able to think and communicate, 13% were independent, and 10% died after discharge. Among survivors whose family member had set minimally acceptable cognitive function at "able to think and communicate," 64% survived below that level; for those with minimally acceptable physical function at independence, 80% survived below that. Qualitative analysis revealed two key themes: families struggled to adapt to a new, yet uncertain, normal and asked for support and guidance with ongoing treatment decisions. CONCLUSIONS AND RELEVANCE: Six months after severe acute brain injury, most patients survived to a state their families initially thought would not be acceptable. Survivors and their families need more support and guidance as they adapt to a new normal and struggle with persistent uncertainty.

Implementing advance care planning in early dementia care: results and insights from a pilot interventional trial.

BACKGROUND: Advance care planning (ACP) is particularly appropriate for persons with early dementia (PWED) since it promotes conversations about dementia-specific illness scenarios, addresses inconsistencies between advance directives and patients' observed behavior, emphasizes prospective and relational autonomy, and may be generally consistent with older persons' decision-making needs. However, despite evidence of its benefits, ACP is yet to become widely used among PWED. In this paper, we present a dementia-specific tool developed in Western Switzerland, discuss results of a pilot trial designed to promote ACP among PWED and their relatives, and discuss the feasibility and acceptability of the intervention and the study protocol in prevision of a large scale trial. METHODS: This one-arm pre-post pilot trial consisted of four visits, with visits 2 and 3 being the ACP intervention. Quantitative outcome measures during visit 1 and 4 assessed the aptitude of the intervention to support PWED autonomy and relatives' knowledge of PWED's preferences. Feasibility was explored according to how the recruitment procedure unfurled and based on the necessary revisions to the study protocol and healthcare providers' reason for excluding a PWED from the study. Acceptability was assessed according to pre-post evaluations, difficulties regarding the intervention or trial participation, and pre-post qualitative interviews regarding participants' reasons to participate to the study, satisfaction with the tool and difficulties perceived. RESULTS: The ACP intervention itself was well received by PWED and their relatives that expressed satisfaction with the procedure, especially regarding the opportunity to discuss a sensitive topic with the help of a facilitator. Five main challenges in terms of feasibility were 1) to locate eligible patients, 2) to tailor recruitment procedures to recruitment locations, 3) to adapt inclusion criteria to clinical routines, 4) to engage PWED and their relatives in ACP, and 5) to design a trial that does not burden PWED. Despite these challenges, the intervention increased the number of advance directives, the concordance between PWED's preferences and relatives' decision on their behalf, and relatives' perceived control over healthcare decisions. CONCLUSION: Misconceptions about dementia and ACP, in the patient, relatives, and healthcare providers, combined with structural and institutional challenges, have the power to impede research and implementation of ACP in dementia care. For this reason, we conclude that a large scale trial to test a dementia-specific tool of ACP is currently not feasible in Western Switzerland and should be endorsed in a systemic approach of ACP. TRIAL REGISTRATION: This trial was registered in the database clinicaltrial.gov with the number NCT03615027 .

'It's not magic': A qualitative analysis of geriatric physicians' explanations of cardio-pulmonary resuscitation in hospital admissions.

BACKGROUND: Discussing patient preferences for cardio-pulmonary resuscitation (CPR) is routine in hospital admission for older people. The way the conversation is conducted plays an important role for patient comprehension and the ethics of decision making. OBJECTIVE: The objective was to examine how CPR is explained in geriatric rehabilitation hospital admission interviews, focussing on circumstances in which physicians explain CPR and the content of these explanations. METHOD: We recorded forty-three physician-patient admission interviews taking place in a hospital in French-speaking Switzerland, during which CPR was discussed. Data were analysed in French with thematic and conversation analysis, and the extracts used for publication were translated into English. RESULTS: Mean patient age was 83.7 years; 53.5% were admitted for rehabilitation after surgery or traumatism. CPR was explained in 53.8% of the conversations. Most explanations were brief and concerned the technical procedures, mentioning only rarely potential outcome. With one exception, medical indication and prognosis of CPR did not feature in these explanations. Explanations occurred either before the patient's answer (as part of the question about CPR preferences) or after the patient's answer, generated by patients' indecision, misunderstanding and by the need to clarify answers. DISCUSSION AND CONCLUSIONS: The scarcity and simplicity of CPR explanations highlight a reluctance to have in-depth discussions and reflect the assumption that CPR does not need explaining. Providing patients with accurate information about the outcomes and risks of CPR is incremental for reaching informed decisions and patient-centred care. PATIENT CONTRIBUTION: Patients were involved in the data collection stage of the study.

A qualitative study on continuous deep sedation until death as an alternative to assisted suicide in Switzerland.

BACKGROUND: According to the European Association for Palliative Care, decisions regarding palliative sedation should not be made in response to requests for assisted dying, such as euthanasia or assisted suicide. However, several studies show that continuous deep sedation until death (CDSUD) - a particular form of sedation - has been considered as an alternative to these practices in some countries. In Switzerland, where assisted suicide is decriminalized and CDSUD is not legally regulated, no studies have comprehensively investigated their relation. Our study aimed to identify and describe the experience among palliative care physicians of CDSUD as a potential alternative to assisted suicide in the French-speaking part of Switzerland. METHODS: We performed an exploratory multicentre qualitative study based on interviews with palliative care physicians in the French-speaking part of Switzerland and conducted linguistic and thematic analysis of all interview transcripts. The study is described in accordance with COREQ guidelines. RESULTS: We included 10 interviews conducted in four palliative care units. Our linguistic analysis shows four main types of sedation, which we called 'rapid CDSUD', 'gradual CDSUD', 'temporary sedation' and 'intermittent sedation'. CDSUD (rapid or gradual) was not considered an alternative to assisted suicide, even if a single situation has been reported. In contrast, 'temporary' or 'intermittent sedation', although not medically indicated, was sometimes introduced in response to a request for assisted suicide. This was the fact when there were barriers to an assisted suicide at home (e.g., when transfer home was impossible or the patient wished not to burden the family). CONCLUSION: These preliminary results can guide clinical, ethical, linguistic and legal reflection in this field and be used to explore this question more deeply at the national and international levels in a comparative, interdisciplinary and multiprofessional approach. They can also be useful to update Swiss clinical guidelines on palliative sedation in order to include specific frameworks on various sedation protocols and sedation as an alternative to assisted suicide. Potential negative impacts of considering palliative sedation as an alternative to assisted suicide should be nuanced by open and honest societal debate.

Advance Care Planning for People with Dementia: The Role of General Practitioners.

General practitioners (GPs) play a key role in the timely diagnosis of dementia and also in advance care planning (ACP). They often have known patients and their families for decades and are familiar with their values and treatment preferences; they are, therefore, in a position to initiate the ACP process even before the appearance of the first symptoms of dementia and certainly following disclosure of the diagnosis. To do so, they should recognise whether patients are receptive to an ACP consultation or whether they might reject it for personal, social or cultural reasons. Under no circumstances should the patient or their family be coerced into making these provisions. In most countries, the current framework does not provide enough time and money for GPs to carry out actual ACP consultations completely on their own. There is evidence that specially trained health professionals are able to more effectively discuss treatment goals and limits of life-prolonging measures than GPs who are well acquainted with their patients. Consequently, we suggest that it will be the GPs' task to seize the right moment for starting an ACP process, to raise awareness of patients and their relatives about ACP, to test the patient's decision-making capacity and, finally, to involve appropriately trained healthcare professionals in the actual ACP consultation process. Care should be taken that these professionals delivering time-intensive ACP consultations are not only able to reflect on the patient's values but are also familiar with the course of the disease, the expected complications and the decisions that can be anticipated. The GP will ensure an active exchange with the ACP professional and should have access to the documentation drawn up in the ACP consultation process (treatment plan and advance directive including instructions for medical emergencies) as soon as possible. GPs as coordinators of healthcare provision should document appropriately all specialists involved in the care and ensure that treatment decisions are implemented in accordance with the patient's preferences for future care or the presumed will of the patient.