Family perspectives on and experiences with advance care planning in nursing homes: A thematic synthesis.

OBJECTIVES: To synthesize family members' experiences and perspectives on advance care planning (ACP) in nursing homes. METHODS: The thematic synthesis is reported following the Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) statement. A systematic search of the APA PsycINFO, CINAHL Plus, Embase and PubMed databases is initially conducted in October 2022, and the search is updated in January 2024. Qualitative studies that presented family members' quotes regarding advance care planning in nursing homes published in a peer-reviewed journal were included. Screening and data extraction were independently performed by two reviewers, and any discrepancies were resolved with the assistance of the third author. RESULTS: A total of 1027 articles were identified, and 23 articles were included in the full-text review. Subsequently, a total of 17 studies were ultimately included, and 127 quotes were extracted and analysed. The main findings were categorized into three themes: (1) invitation to conversation and care, (2) the resident's surrogate and (3) nurses. Considering the importance of family members' roles in ACP conversations in a nursing home setting, this study provided an in-depth understanding of family members' perceptions and experiences of ACP by synthesizing qualitative studies. Family members' lack of knowledge regarding the timing and pursuits of ACP was also identified. CONCLUSION: The findings of this study provide synthesized qualitative evidence of family members' perspectives on ACP, which can inform care and treatment in nursing homes. As this study synthesizes the experiences of family members in nursing homes about ACP, the findings of this study contribute to reflecting family members' experiences and providing evidence for nursing home healthcare professionals. PATIENT OR PUBLIC CONTRIBUTION: This study reports the experiences of family members in ACP nursing homes. The findings of this study contribute to reflecting family members' experiences and building evidence for nursing home healthcare professionals.

"The Razor's Edge of Timing:" A Phenomenological Analysis of Decision-Making Processes Surrounding Medical Aid in Dying.

Objectives: The study aimed to explore how terminally ill individuals in the United States approach medical aid in dying (MAID), including personal, interpersonal and structural factors that influence their decision-making processes. Methods: This embodied phenomenological study incorporated semi-structured (N = 9) interviews with seven terminally ill adults who received a prescription for MAID. Interviews occurred over Zoom between October 2021-January 2023 and was guided by Ashworth's framework for exploring phenomenological lifeworlds. Participants were invited to share perceptions of their lifeworlds in pursuit of MAID including values; embodied health, ability, and emotions; space and place in society; reflections on time/timing; and political and cultural discourse. Data analysis integrated Wertz's phenomenological psychological analysis methods. Results: The phenomenon of choosing MAID is an intricate juggling of lifeworlds between participants' embodied relationships, values, time and agency which lead to co-existing experiences of uncertainty and hard-won relief. Conclusion: Our findings contribute cutting-edge knowledge of the decisional tensions and triumphs terminally ill individuals encounter as they approach MAID and highlight practical implications for health and mental health providers in preparing psychoeducational support for those seeking MAID.

Frailty as a trigger for goals-of-care discussions in rapid response calls: A single-centre retrospective cohort study.

BACKGROUND: Timely goals-of-care (GOC) discussions are essential for end-of-life planning, particularly during acute hospital admissions, where ambiguity often persists. Frailty, prevalent in the ageing population and linked to adverse outcomes, underscores the need to align treatment strategies with quality of life. Recognising frailty as a trigger for GOC discussions during rapid response calls (RRCs) is critical for efficient resource management and improving patient outcomes. METHODS: This single-centre retrospective cohort study included all hospitalised patients aged ≥65 years admitted between September 2021 and June 2023 who experienced an RRC. Frailty was assessed using the Clinical Frailty Scale (CFS) during the RRC. The primary outcome was to investigate whether frailty, specifically assessed by the CFS as screened during an RRC, could be a suitable clinical trigger for initiating GOC discussions. We also aimed to identify the proportion of patients with frailty (CFS score: ≥5) and predictors at the time of RRC, resulting in recommendations for GOC discussions. RESULTS: Among 4954 patients, 1685 (34.0%) were classified as frail (CFS score: ≥5). Recommendations increased with frailty levels (nonfrail [CFS score: 1-4]: 6.6%, mildly frail [CFS score: 5]: 19.3%, moderate-to-severely frail [CFS score: 6-9]: 32.2%; p < 0.001). Frailty independently increased the probability of GOC recommendations during an RRC (area under the receiver operating characteristic curve = 0.71). The CFS cut-off point for GOC recommendations was ≥5. The presence of frailty was associated with higher odds of receiving GOC recommendations for mildly frail (CFS score: 5; odds ratio [OR] = 2.53; 95% confidence interval: 1.96-3.27) and moderate-to-severely frail (CFS score: 6-9; OR = 4.69; 95% confidence interval: 3.81-5.78) compared to nonfrail patients. CONCLUSION: Frailty, identified during an RRC, served as a robust trigger for GOC recommendations, highlighting the importance of tailored proactive discussions before episodes of deterioration. Higher levels of frailty (CFS score: ≥5) demonstrate practical markers for aiding clinicians with proactive GOC discussions.

Palliative Radiotherapy in Non-small Cell Lung Cancer: Patterns of Use and Predictors of 30-Day Mortality in End-of-Life Care.

Introduction Lung cancer is the leading cause of cancer-related deaths worldwide, with non-small cell lung cancer (NSCLC) being the most common type. More than half of patients require radiotherapy throughout their treatment. Palliative radiotherapy (PRT) is an important tool for symptom control and quality of life improvement in advanced NSCLC patients. However, the benefits of PRT must be balanced against possible disadvantages, especially in end-of-life (EOL) care. This study aims to describe the profile of PRT-treated deceased NSCLC patients, quantify the proportion of PRT recipients in the last 30 days of life and identify short-term survival prognostic factors in this group. Materials and methods This retrospective analysis was performed at two radiotherapy facilities within the Kent Oncology Centre, UK, for two years, running from January 1, 2022, to January 1, 2024. Data were collected from 857 deceased NSCLC patients who received PRT. Demographics, cancer diagnosis, histology, tumour, node, metastasis (TNM) staging, radiotherapy details, recent treatments, performance status (PS) and comorbidities were analysed. Patients have been stratified as long-term survivors (more than 30 days after PRT initiation, LTS group) along with short-term survivors (STS) (died within 30 days, STS group). Descriptive statistics, chi-squared tests, t-tests and multivariable logistic regression have been used in the data analysis. Results Out of 857 patients, 148 (17.3%) died within 30 days of PRT initiation. PS was considerably worse (p = 0.027), Adult Comorbidity Evaluation 27 (ACE-27) scores were higher (p = 0.018), and metastatic disease was more prevalent (60.1% vs. 47.5%, p = 0.02) in STS group patients. Fewer patients in the STS group completed their treatment compared to the LTS group (63.5% vs. 82.8%, p < 0.001). The STS group also received lower mean radiation dose (17.7 Gy vs. 19.6 Gy, p = 0.022) and fewer fractions (4.4 vs. 5.2, p = 0.019). The most common RT regimen in both cohorts was 20 Gy in five fractions, used in 55.4% of STS and 49.8% of LTS patients, with no significant difference in single fraction RT use between groups (33.1% in STS vs. 36.8% in LTS, p = 0.401). Multivariate logistic regression identified significant predictors of 30-day mortality: poorer PS (adjusted OR: 1.981, 95% CI: 1.33-3.12, p = 0.001), metastatic disease (adjusted OR: 2.02, 95% CI: 1.246-3.571, p = 0.002), incomplete PRT (adjusted OR: 0.337, 95% CI: 0.21-0.514, p < 0.001) and no recent chemotherapy (adjusted OR: 0.542, 95% CI: 0.342-0.941, p = 0.044). Conclusion This study demonstrated that compared with previous reports, a higher proportion of NSCLC patients who received PRT died within 30 days of treatment initiation, and low treatment adherence rates highlight challenges in EOL settings. Identification of poor PS and metastatic disease as predictors of short-term mortality would help inform PRT decision-making. The underutilisation of single-fraction radiotherapy and the link between recent chemotherapy and lower 30-day mortality warrant further study. These results highlight the need for better prognostic tools and more selective use of PRT, including increased consideration of single-fraction radiotherapy, in NSCLC patients approaching end of life and emphasise the importance of balancing benefit against treatment burden in this vulnerable population.

Words Matter: Why Distinguishing Medical Aid in Dying From Suicide Should Matter to a Consultation-Liaison Psychiatrist.

As more and more American states legalize medical aid in dying (MAID), Consultation-Liaison Psychiatrists will increasingly be asked to assist medical and surgical colleagues in differentiating this end-of-life practice from suicide. Where suicide is traditionally understood as an act clouded by depression, desperation, or both, MAID represents a terminally medically ill patient's effort to take control of their dying process when death is imminent, likely to occur within 6 months, and inevitable. Rendering opinions on patient suicidality in the setting of a complex co-occurring medical illness is a Consultation-Liaison Psychiatrist's bread and butter. This paper seeks to elucidate 4 points that distinguish MAID from suicide: (1) Hastening death when the end of natural life is approaching is not synonymous with suicide in the vernacular American usage of the term. (2) Unlike suicide, MAID is a highly collaborative process in which dying, mentally capable adults involve their doctors and loved ones in legally recognized decisions to hasten death. (3) The clinical presentation of patients requesting MAID differs from that of individuals whose suicidality is driven by psychopathology. (4) Certain behavioral traits differentiate such MAID patients from suicidal ones. Understanding and applying these distinctions in the consultation-liaison arena will help remove the stigma of suicide from end-of-life care deliberations where it does not belong while ensuring appropriate end-of-life care for dying individuals for whom MAID is the culmination of a carefully considered process of self-determination rather than suicide.

Navigating end-of-life decision-making in nursing: a systematic review of ethical challenges and palliative care practices.

OBJECTIVES: This systematic review aimed to synthesize evidence on the ethical dilemma's nurses encounter in end-of-life care and effective palliative care practices. The objectives were to understand key ethical issues, evaluate communication and decision-making strategies, and identify approaches to support nurses and patients. METHODS: A comprehensive search of major databases was conducted according to the PRISMA guidelines. Studies directly relating to nursing ethics, challenges in end-of-life decision-making, and palliative care practices were included. The risk of bias was assessed using ROBVIS-II. Data on ethical issues, palliative interventions, and outcomes was extracted and analyzed thematically. RESULTS: 22 studies met the inclusion criteria. Key themes that emerged were: (1) Effective communication and involving patients in decision-making are essential but complex. (2) Nurses face dilemmas around balancing autonomy, beneficence and relational issues. (3) Integrating palliative care principles enhances symptom management and aligns care with patient values. (4) Education and organizational support are needed to equip nurses with skills and coping strategies. CONCLUSION: Navigating end-of-life care requires addressing interconnected ethical, communication and support needs. While studies provided insights, further research is required on cultural competence training, standardized education programs and longitudinal evaluations.

"It's like crystal gazing": The Lived Experience of Anticipating End-of-Life Choices in Older Adults and Their Close Ones.

BACKGROUND AND OBJECTIVES: Nowadays people increasingly try to take control over the end of their lives by anticipating end-of-life choices. Explication of these choices is encouraged using advance care planning (ACP). We aim to deepen our understanding of how choice-making processes are lived in real life, exploring the experience of community-dwelling older adults and their close ones over time. RESEARCH DESIGN AND METHODS: A multiperspective and longitudinal approach grounded in phenomenology was chosen. Ten triads consisting of an older adult (75+) and 2 close ones (n = 30) were interviewed, twice individually and once as a group, over 20 months (=70 interviews). Data were thematically analyzed both longitudinally and from all 3 perspectives. RESULTS: The essential meaning of anticipatory choice-making processes was described as a dynamic and relationally entangled decisional process, to navigate between paradoxical choices for an opaque future. Three fields of tension were created due to ambivalence in these choice-making processes: navigation between having and losing control, between taking away and burdening with responsibility, and between expressing and holding back oneself. DISCUSSION AND IMPLICATIONS: Anticipation of choices for hypothetical end-of-life scenarios turned out to be complex and ambivalent. Most older adults resisted ambivalence and ignored complexity in an attempt to stay in control over their end of life. The burdening impact of choices on close ones illuminated the relationality of choice-making processes. These aspects of end-of-life choice-making processes should be integrated into ACP in order to better understand and care for people and their close ones faced with these choices.

End-of-Life Care of a Patient With Pontine Stroke and Prolonged Hospitalization: A Case Report.

Stroke is a leading cause of long-term disability in the United States that can lead to loss of function and consciousness. With the abrupt onset of the brain insult, end-of-life care discussions are an important attribute of respecting the patient's best wishes and upholding the ethical principles of autonomy, beneficence, nonmaleficence, fidelity, and justice. Furthermore, the topic of extending life support to individuals with poor prognostic factors of improvement in quality of life and functional recovery has been a continued topic of debate due to a multitude of factors, including the wishes of the patient, familial emotions, cultural beliefs, and religious influences. This case involves a patient who suffered from a left pontine stroke, necessitating multiple end-of-life care conversations. Despite no clinical improvement for several years, the patient required prolonged hospitalization and ongoing ventilator use.

Owner perceptions and experiences with equine necropsy.

In recent years, the number of horses submitted for necropsy has been in decline. This study aimed to identify the perceptions and barriers of equine necropsy through an online survey of horse owners. The data were analyzed by multivariate models for associations and factors that influenced decision making regarding necropsy. The survey yielded 1,366 usable responses. Respondents had higher familiarity with the term "autopsy" compared to "necropsy" (P < 0.001) and showed a greater level of comfort using the terms "body" and "mortality" compared to "carcass" (P < 0.001). Most respondents (82 %) had experienced euthanizing a horse, but few (27 %) were offered a necropsy. Of those offered a necropsy, a majority (81 %) opted to perform one. When asked about their reasons for choosing to have a necropsy performed, recommendations from veterinarians (77.87 OR, 95 % CI: 49.3, 127.5) and already knowing the cause of death (1.85 OR, 95 % CI: 1.2, 30) were positively associated while a benefit to herd health was negatively associated (0.55 OR, 95 % CI: 0.3, 1.0). Owning horses for use as competition animals (1.44 OR, 95 % CI: 0.9, 2.2), the desire for personal closure (1.76 OR, 95 % CI: 1.1, 2.9), and the goals to protect human health (1.29 OR, 95 % CI: 1.0, 1.6) and to improve herd health (1.43 OR, 95 % CI: 1.1, 1.9) were positively associated with a likelihood of choosing to have a necropsy performed or recommending necropsies in the future. This research highlights the need for education of horse owners about the option and benefits of necropsy, and the use of more societally accepted language.

Indian Society of Critical Care Medicine and Indian Association of Palliative Care Expert Consensus and Position Statements for End-of-life and Palliative Care in the Intensive Care Unit.

End-of-life care (EOLC) exemplifies the joint mission of intensive and palliative care (PC) in their human-centeredness. The explosion of technological advances in medicine must be balanced with the culture of holistic care. Inevitably, it brings together the science and the art of medicine in their full expression. High-quality EOLC in the ICU is grounded in evidence, ethical principles, and professionalism within the framework of the Law. Expert professional statements over the last two decades in India were developed while the law was evolving. Recent landmark Supreme Court judgments have necessitated a review of the clinical pathway for EOLC outlined in the previous statements. Much empirical and interventional evidence has accumulated since the position statement in 2014. This iteration of the joint Indian Society of Critical Care Medicine-Indian Association of Palliative Care (ISCCM-IAPC) Position Statement for EOLC combines contemporary evidence, ethics, and law for decision support by the bedside in Indian ICUs. How to cite this article: Mani RK, Bhatnagar S, Butola S, Gursahani R, Mehta D, Simha S, et al. Indian Society of Critical Care Medicine and Indian Association of Palliative Care Expert Consensus and Position Statements for End-of-life and Palliative Care in the Intensive Care Unit. Indian J Crit Care Med 2024;28(3):200-250.

End-of-life decision-making in the emergency department and intensive care unit: Health professionals' perspectives on and knowledge of the law in Queensland.

OBJECTIVE: To investigate ED and intensive care unit healthcare professionals' perspectives and knowledge of the law that underpins end-of-life decision-making in Queensland, Australia. METHODS: An online survey with questions about perspectives, perceived, and actual, knowledge of the law was distributed by the professional organisations of medical practitioners, nurses and social workers who work in Queensland EDs and intensive care units. RESULTS: The survey responses of 126 healthcare professionals were included in the final analysis. Most respondents agreed that the law was relevant to end-of-life decision-making, but that clinician and family consensus mattered more than following the law. Generally, doctors' legal knowledge was higher than nurses'; however, there were significant gaps in the knowledge of all respondents about the operation of advance health directives in Queensland. CONCLUSIONS: The legal framework that supports end-of-life decision-making for adults who lack decision-making capacity has been in place for more than two decades. Despite frequently being involved in making or enacting these decisions, gaps in the legal knowledge of healthcare professionals who work in EDs and intensive care units in Queensland are evident. Further research to better understand how to improve knowledge and application of the law is warranted.

Navigating tensions when life-sustaining treatment is withdrawn: A thematic synthesis of nurses' and physicians' experiences.

AIM: To synthesise nurses' and physicians' experiences with withdrawing life-sustaining treatment in an intensive care unit. DESIGN: The chosen methodology is thematic synthesis. The Preferred Reporting Items for Systematic Review and Meta-Analyses and Enhancing Transparency are used in Reporting the Synthesis of Qualitative Research Statement. METHODS AND DATA SOURCES: A systematic search is conducted in APA PsycINFO, CINAHL Plus, EMBASE, PubMed and Web of Science following the inclusion and exclusion criteria in April 2023. Two reviewers independently screened and extracted the qualitative data. Subsequently, data analysis was conducted using thematic analysis of qualitative research. This study was not registered with any review registry due to the irrelevance of the data to health-related outcomes. RESULTS: From the 16 articles, 267 quotes were extracted and analysed. The findings of the study revealed five analytical themes: (1) tensions between interdependent collaboration and hierarchical roles; (2) tensions between dignified dying or therapeutic perspectives; (3) family members' reflections of patient's wishes; (4) tensions in family members' positions; and (5) double-sidedness of distress. CONCLUSION: This study contributes to nursing knowledge by providing a more nuanced understanding of this complex phenomenon of withdrawing life-sustaining treatment. The findings of this study have revealed significant variations globally in the practices surrounding the withdrawal of life-sustaining treatment in intensive care units, emphasising the need for further research to inform clinical practices that cater to diverse contexts. REPORTING METHOD: Enhancing Transparency are used in Reporting the Synthesis of Qualitative Research Statement (ENTREQ statement). PATIENT OR PUBLIC CONTRIBUTION: Since this study reported a potential collision between the patient's dignified dying and the family member's perceptions and interests, the family member's wishes should be carefully distinguished from the patient's quality of end of life in practice.

The Complex Dynamics of Decision-Making at the End of Life in the Intensive Care Unit: A Systematic Review of Stakeholders' Views and Influential Factors.

A lack of consensus resulting in severe conflicts is often observed between the stakeholders regarding their respective roles in end-of-life (EOL) decision-making in the ICU. Since the burden of these decisions lies upon the individuals, their opinions must be known by medical, judicial, legislative, and governmental authorities. Part of the solution to the issues that arise would be to examine and understand the views of the people in different societies. Hence, in this systematic review, we assessed the attitudes of the physicians, nurses, families, and the general public toward who should be involved in decision-making and influencing factors. Toward this, we searched three electronic databases, i.e., PubMed, CINAHL (Cumulative Index to Nursing & Allied Health), and Embase. A matrix was developed, discussed, accepted, and used for data extraction by two independent investigators. Study quality was evaluated using the Newcastle-Ottawa Scale. Data were extracted by one researcher and double-checked by a second one, and any discrepancies were discussed with a third researcher. The data were analyzed descriptively and synthesized according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Thirty-three studies met our inclusion criteria. Most involved healthcare professionals and reported geographic variations in different timeframes. While paternalistic features have been observed, physicians overall showed an inclination toward collaborative decision-making. Correspondingly, the nursing staff, families, and the public are aligned toward patient and relatives' participation, with nurses expressing their own involvement as well. Six categories of influencing factors were identified, with high-impact factors, including demographics, fear of litigation, and regulation-related ones. Findings delineate three key points. Firstly, overall stakeholders' perspectives toward EOL decision-making in the ICU seem to be leaning toward a more collaborative decision-making direction. Secondly, to reduce conflicts and reach a consensus, multifaceted efforts are needed by both healthcare professionals and governmental/regulatory authorities. Finally, due to the multifactorial complexity of the subject, directly related to demographic and regulatory factors, these efforts should be more extensively sought at a regional level.

Using the Kipling method to explore the contextual factors of decision-making during advance care planning for older cancer patients, their family, and health-care professionals: A qualitative secondary analysis.

OBJECTIVES: Advance care planning (ACP) interventions are supposed to affect patients' autonomy and family health-care outcomes positively. However, the clinical benefits of ACP actualization and associated contextual factors merit questioning. Therefore, this study explores the critical contextual and procedural factors related to ACP decision-making based on the actual situation of older patients with cancer encountering end-of-life care in Taiwan. METHODS: This retrospective qualitative secondary analysis used the Kipling method (5W1H) to explore further the critical contextual and procedural factors related to ACP decision-making processes. We applied thematic analysis and dual coding for 35 narratives, including 10 patients with cancer, 10 family caregivers, and 15 health-care staff, derived from a preliminary qualitative study regarding palliative care decision-making among patients with advanced cancer, their families, and health-care staff. RESULTS: We identified 6 domains detailing the contextual factors for ACP decision-making: (1) WHO (decision makers); (2) WHAT (discussion content); (3) WHEN (care plan for which disease stage); (4) WHERE (patient's situational location); (5) WHY (reasons underpinning the decisions); and (6) HOW (the way to form the decisions). SIGNIFICANCE OF RESULTS: Using the Kipling method to elaborate the contextual factors for ACP decision-making among older patients with cancer strengthens the understanding of complicated end-of-life care decision-making procedure. This study also demonstrates the dynamic and cultural complexity and the various factors considered during end-of-life care and future ACP discussion.

Characterizing end-of-life communication in families.

Background: The chronic disease course can be uncertain, contributing to delayed end-of-life discussion within families resulting in missed opportunity to articulate wishes, increased decisional uncertainty, and delayed hospice care. Consistent with the Family Communication Patterns Theory (FCPT), family communication patterns may affect the quality and timing of end-of-life discussion, hospice utilization, and the experience of 'a good death.' Objective: To assess how families' conversation and conformity orientation (spontaneity of conversation and hierarchical rigidity) form four family communication patterns (consensual, pluralistic, protective, and laissez-faire) and may be associated with the number and timing of end-of-life discussions. Design: A cross-sectional study. Methods: Family members of loved ones who died from chronic illnesses while in hospice (n = 56) completed online surveys including a modified Revised Family Communication Pattern instrument (RFCP) and the Chronic Illness Rating Scale (CIRS). Additional survey questions assessed the number and timing of end-of-life discussions and timing of hospice enrollment. IBM SPSS version 26 was used for descriptive analysis. Results: Most families (42.9%) were pluralistic, reporting communication styles with high conversation and low conformity orientation; (39.29%) were protective, reporting low conversation and high conformity orientation. Pluralistic families had more end-of-life conversations than did protective families. Conclusion: Study findings suggest that there may be a relationship between family communication pattern type and inclination toward end-of-life discussion. This first step supports future research regarding whether the FCPT can be used to predict which families may be at increased risk for ineffective or delayed end-of-life discussion. Additional variables to consider include the timing of hospice enrollment and the quality of the dying experience. Clinicians may ultimately use findings to facilitate earlier identification of and intervention for families who are at risk for poor end-of-life communication and outcomes.

Attitudes and Perceptions on Advance Care Planning Among Chinese-Speaking Older Australians.

BACKGROUND: Current literature indicates low uptake of advance care planning (ACP) among the Chinese-speaking community in Australia. To increase the uptake of ACP among the Chinese-speaking community, a better understanding of their attitudes and perceptions on end-of-life (EOL) matters, and ACP is required. OBJECTIVE: This study aimed to identify significant events and social and cultural factors that influence participants' values and characterize the attitudes and perceptions towards ACP among older Chinese-speaking Australians. METHODS: A qualitative study explored participants' experiences through semi-structured one-to-one interviews. The interviews were conducted in Mandarin, Cantonese or English, then translated and transcribed into English. The transcripts were coded and analysed thematically. RESULTS: Twenty participants were recruited (14 female, six male). Participants typically reported a preference to make health-related decisions autonomously. Their perspectives were grounded in past experiences of illnesses and EOL decision-making of loved ones, personal values, and perceived needs. Family dynamics and intimacy of relationships appeared to influence the role and responsibility of family members in EOL decision-making and ACP. Most participants perceived the need to engage in ACP only when encountering significant health changes or higher care needs. CONCLUSION: Healthcare professionals should initiate ACP discussion using culturally appropriate communication with consideration of personal values, past experiences and family dynamics. Efforts should be invested in raising public awareness of ACP within the Chinese-Australian community.

Conventional and assisted suicide in Switzerland: Insights into a divergent development based on cancer-associated self-initiated deaths.

BACKGROUND: We tested the hypothesis of supporters of assisted dying that assisted suicide (AS) might be able to prevent cases of conventional suicide (CS). METHODS: By using data from the Federal Statistical Office, we analyzed the long-term development of 30,756 self-initiated deaths in Switzerland over a 20-year period (1999-2018; CS: n = 22,018, AS: n = 8738), focusing on people suffering from cancer who died from AS or CS. RESULTS: While cancer was the most often listed principal disease for AS (n = 3580, 41.0% of AS cases), cancer was listed in only a small minority of CS cases (n = 832, 3.8% of CS cases). There was a significant increase in the absolute number of cancer-associated AS cases: comparing four 5-year periods, there was approximately a doubling of cases every 5 years (1999-2003: n = 228 vs.2004-2008: n = 474, +108% compared with the previous period; 2009-2013: n = 920, +94%; 2014-2018: n = 1958, +113%). The ratio of cancer-associated AS in relationship with all cancer-associated deaths increased over time to 2.3% in the last observation period (2014-2018). In parallel, the numbers of cancer-associated CS showed a downward trend only at the beginning of the observation period (1999-2003, n = 240 vs. 2004-2008, n = 199, -17%). Thereafter, the number of cases remained stable in the subsequent 5-year period (2009-2013, n = 187, -6%), and increased again toward the most recent period (2014-2018, n = 206, +10%). CONCLUSION: The assumption that, with the increasingly accessible option of AS for patients with cancer, CS suicide will become "superfluous" cannot be confirmed. There are strong reasons indicating that situations and circumstances of cancer-associated CS are different from those for cancer-associated AS.

How clinicians discuss patients' donor registrations of consent and presumed consent in donor conversations in an opt-out system: a qualitative embedded multiple-case study.

BACKGROUND: The Netherlands introduced an opt-out donor system in 2020. While the default in (presumed) consent cases is donation, family involvement adds a crucial layer of influence when applying this default in clinical practice. We explored how clinicians discuss patients' donor registrations of (presumed) consent in donor conversations in the first years of the opt-out system. METHODS: A qualitative embedded multiple-case study in eight Dutch hospitals. We performed a thematic analysis based on audio recordings and direct observations of donor conversations (n = 15, 7 consent and 8 presumed consent) and interviews with the clinicians involved (n = 16). RESULTS: Clinicians' personal considerations, their prior experiences with the family and contextual factors in the clinicians' profession defined their points of departure for the conversations. Four routes to discuss patients' donor registrations were constructed. In the Consent route (A), clinicians followed patients' explicit donation wishes. With presumed consent, increased uncertainty in interpreting the donation wish appeared and prompted clinicians to refer to "the law" as a conversation starter and verify patients' wishes multiple times with the family. In the Presumed consent route (B), clinicians followed the law intending to effectuate donation, which was more easily achieved when families recognised and agreed with the registration. In the Consensus route (C), clinicians provided families some participation in decision-making, while in the Family consent route (D), families were given full decisional capacity to pursue optimal grief processing. CONCLUSION: Donor conversations in an opt-out system are a complex interplay between seemingly straightforward donor registrations and clinician-family interactions. When clinicians are left with concerns regarding patients' consent or families' coping, families are given a larger role in the decision. A strict uniform application of the opt-out system is unfeasible. We suggest incorporating the four previously described routes in clinical training, stimulating discussions across cases, and encouraging public conversations about donation.

Citizen attitudes to non-treatment decision making: a Norwegian survey.

BACKGROUND: Decisions about appropriate treatment at the end of life are common in modern healthcare. Non-treatment decisions (NTDs), comprising both withdrawal and withholding of (potentially) life-prolonging treatment are in principle accepted in Norway. However, in practice they may give rise to significant moral problems for health professionals, patients and next of kin. Here, patient values must be considered. It is relevant to study the moral views and intuitions of the general population on NTDs and special areas of contention such as the role of next of kin in decision-making. METHODS: Electronic survey to members of a nationally representative panel of Norwegian adults. Respondents were presented with vignettes describing patients with disorders of consciousness, dementia, and cancer where patient preferences varied. Respondents answered ten questions about the acceptability of non-treatment decision making and the role of next of kin. RESULTS: We received 1035 complete responses (response rate 40.7%). A large majority, 88%, supported the right of competent patients to refuse treatment in general. When an NTD was in line with the patient's previously expressed preferences, more respondents tended to find NTDs acceptable. More respondents would accept NTDs for themselves than for the vignette patients. In a scenario with an incompetent patient, clear majorities wanted the views of next of kin to be given some but not decisive weight, and more weight if concordant with the patient's wishes. There were, however, large variations in the respondents' views. CONCLUSION: This survey of a representative sample of the Norwegian adult population indicates that attitudes to NTDs are often in line with national laws and guidelines. However, the high variance among the respondents and relatively large weight given to next of kin's views, indicate a need for appropriate dialogue among all stakeholders to prevent conflicts and extra burdens. Furthermore, the emphasis given to previously expressed opinions indicates that advance care planning may increase the legitimacy of NTDs and prevent challenging decision-making processes.