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.

[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.

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.

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.

Cognitive abilities and engagement in advance care planning among older adults: Results of a Swiss populational study.

Individuals often wait until the last moment to plan their end-of-life (EOL) care. Yet, decision-making capacity decreases with age, which could compromise engagement in and the effectiveness of advance care planning (ACP). Little is known about the association between cognitive abilities and the steps involved in the multifaceted process of ACP in older adults. The present study aims to better understand the association of global cognitive competence with engagement in ACP in a nationally representative sample of older adults in Switzerland. Global cognitive competence was measured via verbal fluency, immediate and delayed memory, basic calculation skills, and temporal orientation. Engagement in ACP included approving advance directives, having discussed EOL preferences, having a living will, and having a health care proxy. We analyzed data of 1,936 respondents aged 55+ from a paper-and-pencil questionnaire that was administered as part of Wave 6 (2015) of the Survey of Health, Ageing and Retirement in Europe in Switzerland using logistic regression models. Respondents with reduced global cognitive competence are less likely to have discussed their EOL preferences with others and to have a living will. Our results also indicate an interaction between age and cognition with respect to having a living will. Individuals with lower global cognitive competence in the oldest age group-adults aged 75 and older-are less likely to have a living will. Our findings highlight that low global cognitive competence can be seen as a barrier to engagement in ACP, particularly among adults 75 years and older. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Qualitative Evaluation of a Pilot Physician Training Program in Long-Term Care Facilities in Switzerland.

Increasing demand for long-term care facilities (LTCFs) and increasingly complex medical needs of LTCF residents necessitate recruiting new physician graduates and developing programs which provide them with experience and specific skills in geriatric and palliative medicine. We developed an educational program for physicians in training, which combines 1 year of immersion at 20% full-time equivalent with (1) theoretical teaching, (2) clinical exposure under the supervision of a senior LTCF physician, and (3) structured case presentations and debriefing with experienced geriatricians. This article presents a preliminary qualitative evaluation of this program from the perspectives of the trainees, supervising physicians, and public health stakeholders. The program was well accepted by all parties and showed positive effects on trainees' interest in long-term care medicine. Suggestions for improving future programs and their implementation are provided.

Irrelevant Interests? A Qualitative Study Into How German Family Surrogates of Persons Living With Dementia Fulfill Their Legal Role as Advocates of an Advance Directive.

BACKGROUND AND OBJECTIVES: German legislation establishes advance directives (ADs) as legally binding instruments that all involved parties need to adhere to. This applies also to family members who have been authorized as official surrogates of the AD's author. As surrogates, they are expected to make sure that the AD is being implemented. Our study aims at uncovering how family members experience their legally assigned role as an advocate of an AD. RESEARCH DESIGN AND METHODS: We conducted 25 episodic interviews with family surrogates of persons living with dementia and used thematic analysis to make sense of our interview data. RESULTS: Family surrogates expressed scepticism toward ADs as instruments for planning end-of-life care. They did not necessarily follow the decisions expressed in the AD. We found cases in which family surrogates intentionally refrained from bringing the ADs to the attention of health care providers as well as cases in which the ADs conflicted with self-related interests of family surrogates. DISCUSSION AND IMPLICATIONS: Our findings lead us to critique the legal construction of family surrogates as advocates of the AD. Family members are directly and enduringly affected by the end-of-life care decisions that the AD sets out and are thus no neutral agents who have no stake in the matter. Expecting them to simply transmit decisions formulated in the AD means expecting them to render their own interests irrelevant-which, arguably, might be too much to ask.

Palliative sedation: ethics in clinical practice guidelines - systematic review.

OBJECTIVES: The objective of our study was to determine whether, and to what degree, the ethical dimension was present in clinical practice guidelines (CPGs) on palliative sedation, and to identify the ethical issues with respect to the different forms of this practice. The purpose was purely to be descriptive; our aim was not to make any kind of normative judgements on these ethical issues or to develop our own ethical recommendations. METHODS: We performed a systematic review of CPGs on the palliative sedation of adults, focusing our analysis on the ethical dimension of these texts and the ethical issues of this practice. The study protocol is registered on PROSPERO. RESULTS: In total, 36 current CPGs from four continents (and 14 countries) were included in our analysis. Generally, ethics was rarely referred to or absent from the CPGs. Only six texts contained a specific section explicitly related to ethics. Ethical issues were named, conceptualised and presented in heterogeneous, often confusing ways. It was impossible to identify the ethical issues of each form of palliative sedation. Ethics expertise was not involved in the development of most of the CPGs and, if it was, this did not always correlate with the ethical dimension of the document. CONCLUSIONS: Effective cooperation between palliative care clinicians and ethicists should be encouraged, in order to integrate in particular the crucial ethical issues of continuous deep sedation until death when developing or updating CPGs on palliative sedation.

Advance Care Planning: A Story of Trust Within the Family.

As the family usually plays a central role at the end of life, the quality of family relationships may influence how individuals approach advance care planning (ACP). Our study investigates the associations of trust in relatives with regard to end-of-life (EOL) issues-used as a proxy measure of family relationship quality-with individuals' engagement in EOL discussions, advance directive (AD) awareness, approval and completion, and designation of a healthcare proxy. Using nationally representative data of adults aged 55 years and over from wave 6 (2015) of the Survey of Health, Ageing, and Retirement in Europe (SHARE) in Switzerland (n = 1911), we show that complete trust in relatives is related to higher engagement in ACP. Subject to patient consent, the family should, therefore, be included in the ACP process, as such practice could enhance patient-centered EOL care and quality of life at the end of life.

"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.

Overestimation of Survival Rates of Cardiopulmonary Resuscitation Is Associated with Higher Preferences to Be Resuscitated: Evidence from a National Survey of Older Adults in Switzerland.

BACKGROUND: Many widely used advance directives templates include direct questions on individuals' preferences for cardiopulmonary resuscitation (CPR) in case of decision-making incapacity during medical emergencies. However, as knowledge of the survival rates of CPR is often limited, individuals' advance decisions on CPR may be poorly aligned with their preferences if false beliefs about the survival rates of CPR shape stated preferences for CPR. METHODS: We analyzed nationally representative data from 1,469 adults aged 58+ y who responded to wave 8 (2019/2020) of the Swiss version of the Survey on Health, Ageing, and Retirement in Europe (SHARE) to assess the partial association between knowledge of CPR survival rates and stated preferences for CPR using multivariable probit regression models that adjust for social, health, and regional characteristics. Knowledge of CPR survival rates was assessed by asking how likely it is in general in Switzerland for a 70-y-old to survive until hospital discharge from a CPR performed outside of a hospital. Preferences for CPR were measured by asking respondents if they would wish to be resuscitated in case of cardiac arrest. RESULTS: Only 9.3% of respondents correctly assessed the chances for a 70-y-old to survive until hospital discharge from a CPR performed outside of a hospital, while 65.2% indicated a preference to be resuscitated in case of a cardiac arrest. Respondents who correctly assessed CPR survival were significantly more likely to wish not to be resuscitated (average marginal effect: 0.18, P < 0.001). CONCLUSIONS: Reducing misconceptions concerning the survival rates of CPR could change older adults' preferences for CPR and make them more likely to forgo such treatments. HIGHLIGHTS: Many older adults in Switzerland overestimate the survival rates of cardiopulmonary resuscitation (CPR).The study reveals that individuals with accurate knowledge of CPR survival rates are more likely to refuse resuscitation in case of cardiac arrest.Overestimation of CPR survival rates may lead to a mismatch between individuals' preferences for CPR and their actual end-of-life care decisions.Improving the general population's knowledge of CPR survival rates is crucial to ensure informed decision making and effective advance care planning.

Should continuous deep sedation until death be legally regulated in Switzerland? An exploratory study with palliative care physicians.

Background: In Switzerland, continuous deep sedation until death (CDSUD) is not legally regulated and the current clinical practice guidelines on palliative sedation from 2005 do not refer to it. In contrast, in France, a neighbouring country, CDSUD is regulated by a specific law and professional guidelines. International studies show that in culturally polymorphic countries, there are variations in the end-of-life practices between linguistic regions and that a linguistic region shares many cultural characteristics with the neighbouring country. Objectives: This study aimed to explore the attitudes of palliative care physicians from the French-speaking part of Switzerland on the question of whether CDSUD should be legally regulated in the country, and to identify their arguments. Our study also aimed to assess whether a hypothetical Swiss law on CDSUD should be similar to the current legal regulation of this practice in France. Design: We conducted a multicentre exploratory qualitative study based on face-to-face interviews with palliative care physicians in the French-speaking part of Switzerland. Methods: We analysed the interview transcripts using thematic analysis, combining deductive and inductive coding. Results: Most of the participants were opposed to having specific legal regulation of CDSUD in Switzerland. Their arguments were diverse: some focused on medical and epistemological aspects of CDSUD, whereas others emphasized the legal inconvenience of having such regulation. None had the opinion that, if CDSUD were legally regulated in Switzerland, the regulation should be similar to that in France. Conclusion: This study allows to better understand why palliative care physicians in French-speaking Switzerland may be reluctant to have legal regulation of CDSUD. Further studies covering the whole country would be needed to gain a more complete picture of Swiss palliative care physicians on this question.

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.

"If I Become a Vegetable, Then no": A Thematic Analysis of How Patients and Physicians Refer to Prognosis When Discussing Cardiopulmonary Resuscitation.

Background: Documenting decisions about the relevance cardiopulmonary resuscitation (CPR) is a standard practice at hospital admission yet a complex task. Objective: Our aim was to explore how physicians approach and discuss CPR prognosis with older patients recently admitted to a post-acute care unit. Method: We recorded 43 conversations between physicians and patients about the relevancy of CPR that took place at admission at the geriatric rehabilitation service of a Swiss university hospital. Thematic analysis determined (i) who initiated the talk about CPR prognosis, (ii) at what point in the conversation, and (iii) how prognosis was referred to. Results: Prognosis was mentioned in 65% of the conversations. We categorized the content of references to CPR prognosis in five themes: factors determining the prognosis (general health, age, duration of maneuvers); life (association of CPR with life, survival); proximal adverse outcomes (broken ribs, intensive care); long-term adverse outcomes (loss of autonomy, suffering a stroke, pain, generic, uncertainty); and being a burden. Discussion and conclusion: Discussing CPR is important to all patients, including those for whom it is not recommended. Information about CPR prognosis is essential to empower and support patients in expressing their expectations from life-prolonging interventions and attain shared decision-making.

Development and validation of a subjective end-of-life health literacy scale.

Personal health literacy is the ability of an individual to find, understand, and use information and services to inform health-related decisions and actions for oneself and others. The end of life is commonly characterized by the occurrence of one or several diseases, the use of many different types of healthcare services, and a need to make complex medical decisions that may involve challenging tradeoffs, such as choices between quality and length of life. Although end-of-life care issues concern most people at some point in life, individuals' competencies to deal with those questions have rarely been explored. This study aims to introduce, develop, and validate an instrument to measure individuals' self-assessed competencies to deal with end-of-life medical situations, the Subjective End-Of-Life Health Literacy Scale (S-EOL-HLS), in a sample of older adults aged 50+ living in Switzerland who participated in wave 8 (2019/2020) of the Survey of Health, Ageing, and Retirement in Europe. The S-EOL-HLS uses a series of questions on self-rated difficulties in understanding end-of-life medical jargon, defining in advance which end-of-life medical treatments to receive or refuse, and communicating related choices. Aside from conducting exploratory and confirmatory factor analysis to evaluate the construct validity, we compared measurements from the S-EOL-HLS to respondents' general health literacy measured with the European Health Literacy Survey questionnaire. We obtained a three-factor model with acceptable fit properties (CFI = 0.993, TLI = 0.992, RMSEA = 0.083, SRMR = 0.061) and high reliability (α = 0.93). The partial associations between the health literacy scores from the two scales and respondents' sociodemographic characteristics were similar; however, individuals with higher end-of-life health literacy scores appeared to have more positive attitudes towards end-of-life care planning outcomes. The S-EOL-HLS demonstrates reliable and consistent results, making the instrument suitable for older adults in population surveys.

Older adults' medical preferences for the end of life: a cross-sectional population-based survey in Switzerland.

OBJECTIVES: Medical decision-making at the end of life is common and should be as patient-centred as possible. Our study investigates older adults' preferences towards three medical treatments that are frequently included in advance directive forms and their association with social, regional and health characteristics. SETTING: A cross-sectional study using population-based data of wave 8 (2019/2020) of the Swiss component of the Survey of Health, Ageing and Retirement in Europe. PARTICIPANTS: 1430 adults aged 58 years and older living in Switzerland. PRIMARY AND SECONDARY OUTCOME MEASURES: Three questions on the preferences regarding cardiopulmonary resuscitation (CPR); life-prolonging treatment in case of high risk of permanent mental incapacity; reduced awareness (sedation) to relieve unbearable pain and symptoms. Their associations with individuals' social, regional and health characteristics. RESULTS: Most older adults expressed a wish to receive CPR (58.6%) and to forgo life-prolonging treatment in case of permanent mental incapacity (92.2%). Most older adults also indicated that they would accept reduced awareness if necessary to receive effective treatment for pain and distressing symptoms (59.2%). Older adults' treatment preferences for CPR and life-prolonging treatment differed according to sex, age, partnership status, linguistic region and health status, while willingness to accept reduced awareness for effective symptom treatment was more similarly distributed across population groups. CONCLUSIONS: Simultaneous preferences for CPR and refusal of life-prolonging treatment might appear to be conflicting treatment goals. Considering individuals' values and motivations can help clarify ambivalent treatment decisions. Structured advance care planning processes with trained professionals allows for exploring individuals' motivations and values and helps to identify congruent care and treatment goals.

The Neurological Rehabilitation of Adults With Coma and Disorders of Consciousness.

BACKGROUND: Severe quantitative disorders of consciousness (DoC) due to acute brain injury affect up to 47% of patients upon admission to intensive care and early rehabilitation units. Nevertheless, the rehabilitation of this vulnerable group of patients has not yet been addressed in any German-language guidelines and has only been studied in a small number of randomized clinical trials. METHODS: In an S3 clinical practice guideline project, a systematic literature search was carried out for interventions that could improve consciousness in patients with coma, unresponsive wakefulness syndrome, or minimally conscious state after acute brain injury, and an evidence-based evaluation of these interventions was performed. Recommendations concerning diagnostic methods and medical ethics were issued by consensus. RESULTS: Misdiagnoses are common in patients with DoC, with minimal consciousness often going unrecognized. Patients with DoC should, therefore, be repeatedly assessed with standardized instruments, particularly the Coma Recovery Scale-Revised. The literature search yielded 54 clinical trials, mostly of low quality; there were two randomized controlled clinical trials providing level 1 evidence. The best available evidence for the improvement of impaired consciousness is for the administration of amantadine (4 studies) and for anodal transcranial direct-current stimulation of the left dorsolateral prefrontal cortex in patients in the minimal conscious state (8 studies, 2 systematic reviews). Further important components of rehabilitation include positioning methods and sensory stimulation techniques such as music therapy. CONCLUSION: For the first time, evidence-based German-language clinical practice guidelines have now become available for the neurological rehabilitation of patients with DoC.