How Primary Care Clinicians Process Patient Death: Logistics, Emotions, and Opportunities for Structural Support.

BACKGROUND: Navigating the logistics and emotional processing of a patient's death is an inevitable part of many physicians' roles. While research has primarily examined how inpatient clinicians cope with patient loss, little work has explored how primary care clinicians (PCCs) handle patient death in the outpatient setting, and what support resources could help PCCs process loss. OBJECTIVE: To explore PCCs' experiences with the logistics and emotional processing of patient deaths and suggestions for supportive resources. DESIGN: Qualitative study using semi-structured interviews conducted between March and May 2023. PARTICIPANTS: Recruitment emails were sent to 136 PCCs (physicians and nurse practitioners) at three San Francisco academic primary care clinics. Twelve clinicians participated in the study. APPROACH: This study used a template analysis approach. Interview transcripts were analyzed in an iterative fashion to identify themes for how PCCs navigate patient death. RESULTS: Participants (n=12) described outpatient death notification as inconsistent, delayed, and rife with uncertainty regarding subsequent actions. They felt various emotions, notably sadness and guilt, especially with deaths of young, vulnerable patients or those from preventable illnesses. Participants identified strategies for emotional processing and recommended improvements including clear procedural guidance, peer debriefings, and formal acknowledgements of deceased patients. CONCLUSIONS: Interviewing PCCs about their experiences following a patient death revealed key themes in logistical and emotional processing, and clinic resource recommendations to better support PCCs. Given the distinct characteristics of primary care-such as enduring patient relationships, greater isolation in ambulatory settings compared to inpatient environments, and rising burnout rates-enhancing guidance and support for PCCs is crucial to mitigate administrative burdens and grief after patient loss.

The mediating role of meaning in life between experiential avoidance and death anxiety among cancer patients: a cross-sectional study.

BACKGROUND: Death anxiety is thought to cause a range of mental disorders among cancer patients, which may affect their mental health and even quality of life. This study sought to investigate experiential avoidance, meaning in life, and death anxiety among Chinese cancer patients and then explore the relationship between these 3 variables. METHODS: A total of 300 cancer patients recruited from a tertiary cancer hospital participated in this study from October to December 2021. A cross-sectional survey was conducted using a demographic and clinical characteristics questionnaire, the Acceptance and Action Questionnaire II, the Meaning in Life Questionnaire, and Templer's Death Anxiety Scale. Correlation analysis, hierarchical regression analysis, and mediating effect analysis were used to analyze the relationship among experiential avoidance, meaning in life (including 2 dimensions: presence of meaning and search for meaning), and death anxiety. RESULTS: A total of 315 questionnaires were distributed, and 300 valid questionnaires were returned, resulting in a valid response rate of 95.2%. Experiential avoidance (r = 0.552, p < 0.01) was moderately positively correlated with death anxiety. Presence of meaning (r = - 0.400, p < 0.01) was moderately negatively correlated with death anxiety, while search for meaning (r = - 0.151, p < 0.01) was weakly negatively correlated with death anxiety. Regression analysis showed that experiential avoidance (ß = 0.464) and presence of meaning (ß = -0.228) were predictors of death anxiety. Mediating effect analysis revealed that presence of meaning either completely or partially mediated the effect of experiential avoidance and death anxiety, and the indirect effect accounted for 14.52% of the total effect. CONCLUSION: Overall, experiential avoidance predicts death anxiety in cancer patients, and meaning in life can mediate this effect. The results of this study provide a new path for studying the mechanism of death anxiety and suggest a more positive and promising strategy for its management.

Effects of meaning-based psychotherapy on post-traumatic growth and death anxiety in patients with cancer: a systematic review and meta-analysis.

INTRODUCTION: Cancer is one of the leading causes of mortality in the world which imposes numerous psychological burdens on the patients. Psycho-spiritual interventions such as meaning-based therapies may help decrease these challenges. This systematic review and meta-analysis aim to investigate the effects of meaning-based psychotherapy on post-traumatic growth and death anxiety of patients with cancer. METHODS: PubMed, Scopus, Proquest, Web of Science, and Google Scholar were searched until 30 September 2023. The Cochrane Collaboration's tool was used to assess the quality of the included studies. A random-effect model was preferred, and statistical analysis was performed by STATA software version 17. RESULTS: A total of 17 studies were included in the systematic review. Eleven articles examined the impact of meaning-based interventions on death anxiety and six articles examined post-traumatic growth in cancer patients. Ten studies with a total of 555 participants were included for analysis of the effect of logotherapy versus routine care on death anxiety. Analysis showed a significant decrease effect of logotherapy versus routine care on death anxiety (SMD, - 4.05 (- 6.20, - 1.90); I2, 98.38%). Three studies with a total of 364 participants were included for analysis of the effect of logotherapy versus routine care on post-traumatic growth in patients with cancer. Analysis showed a positive but non-significant effect of logotherapy versus routine care on post-traumatic growth (SMD, 2.05 (- 0.91, 5.01); I2, 99.08%). CONCLUSION: The qualitative analysis showed the positive impact of meaning-based psychotherapy interventions on death anxiety and post-traumatic growth in cancer patients, but the results of the meta-analysis on post-traumatic growth were not statistically significant. The review shows the need for more clinical trial studies in larger and more diverse samples in terms of cancer types and cultural background.

The effect of sleep quality on attitudes toward death in breast cancer survivors.

PURPOSE: The aim of this study was to determine the levels of sleep quality and attitudes toward death among breast cancer survivors and to examine the impact of sleep quality on attitudes toward death. METHODS: This descriptive and correlational study was conducted with 117 patients who had been treated for breast cancer in radiation oncology. Data were collected using a Demographic Information Form, the Pittsburgh Sleep Quality Index, and the Death Attitude Profile-Revised Scale. RESULTS: The mean score for sleep quality among breast cancer survivors was 15.17 ± 3.96, while the mean score for the Death Attitude Profile-Revised was 137.65 ± 30.74. Sleep quality was associated with marital status, place of residence, perception of economic status, presence of social support, time since diagnosis, body mass index, and other factors (p < 0.05). Attitudes toward death were associated with age, educational level, occupation, place of residence, perception of economic status, comorbidity, histopathological stage, chemotherapy status, type of breast surgery, and other factors (p < 0.05). Additionally, a moderately positive correlation was found between sleep quality and attitudes toward death among women undergoing breast cancer treatment (r = 0.368, p < 0.001). It was determined that patients' sleep quality, education status, and comorbidity had a significant effect on attitudes toward death and the variables explained 29.4% of the variance (R2 = 0.294) (p < 0.001). CONCLUSION: This study shows that there is a significant relationship between sleep quality and attitudes toward death in cancer patients and that sleep quality affects attitudes toward death. In addition, when evaluating the sleep quality and attitudes toward death of women treated for breast cancer, taking into account their sociodemographic characteristics and treatment characteristics may contribute positively to the recovery process and quality of life.

Quality of life and death anxiety among caregivers of patients with advanced cancer: the mediating effect of trait anxious personality and the moderating effect of social support.

PURPOSE: To explore the mediating role of trait anxious personality in the association between quality of life (QoL) and death anxiety (DA), as well as to test the moderating effect of social support in the mediation model. METHODS: The Death Anxiety Scale, Quality of Life Scale, State-Trait Anxiety Scale, and Social Support Rating Scale were used to measure 588 family caregivers of advanced cancer patients. We then constructed a moderated mediation model. RESULTS: The presence of QoL was negatively associated with DA (ß = - 0.67, p < 0.01). Trait anxious personality partially mediated the relationship between QoL and DA (indirect effect ß = - 0.08, p < 0.01). Social support moderated both the antecedent and subsequent segments of the mediating paths of "QoL → trait anxious personality → DA" and the direct relationship between QoL and DA. Among caregivers with a low level of social support, the mediating effect coefficient of trait anxious personality was higher at 0.25 (95% confidence interval (CI): 0.059-0.182), in contrast to caregivers with a high level of social support, where the mediating effect coefficient of trait anxious personality was 0.11 (95% CI: 0.029-0.072). CONCLUSION: QoL is directly associated with an increased risk of DA and indirectly related to DA by increasing the risk of trait anxious personality among caregivers. Social support can moderate the mediating effect of trait anxious personality and the relationship between QoL and DA. The intervention strategy for preventing DA among caregivers who have encountered QoL reduction should focus on reducing trait anxious personality and social support.

Death anxiety among caregivers of patients with advanced cancer: a cross-sectional survey.

PURPOSE: This study aimed to investigate death anxiety (DA) in caregivers of patients with advanced cancer and identify associated factors in the context of Chinese culture. METHODS: Caregivers (N = 588) of advanced cancer patients in a tertiary cancer hospital completed anonymous questionnaire surveys. Measures included the Chinese version of the Templer Death Anxiety Scale (C-T-DAS), the Quality-of-Life Scale, the State-Trait Anxiety Scale, and the Social Support Rating Scale. Data were analyzed in SPSS (IBM Corp, Armonk, NY, USA) using descriptive statistics, Pearson's correlation test, and linear regression. RESULTS: Respondents returned 588 (93.03%) of the 632 questionnaires. The total C-T-DAS score was 7.92 ± 2.68 points. The top-scoring dimension was "Stress and pain" (3.19 ± 1.29 points), followed by "Emotion" (2.28 ± 1.31 points) and "Cognition" (1.40 ± 0.94 points). In contrast, the lowest-scoring dimension was "Time" (1.06 ± 0.77 points). Factors associated with DA (R2 = 0.274, F = 13.348, p < 0.001) included quality of life (QoL), trait anxious personality, social support, caregiver length of care, caregiver gender, and patients' level of activities of daily living (ADL). CONCLUSIONS: Our results demonstrated high levels of DA in caregivers of patients with advanced cancer. Generally, female caregivers and those with low social support had high DA. Caregivers caring for patients with low ADL levels or with a low QoL and trait anxious personality reported high DA. Certain associated factors help to reduce caregivers DA. Social interventions are recommended to improve the end-of-life transition and trait anxious personality as well as quality of life for caregivers.

'I secretly wish. . .' Caregivers' expression of wish for death of persons with severe dementia.

BACKGROUND: Qualitative evidence suggests that caregivers may express a wish for death of persons with severe dementia (PwSD). No study has assessed the extent to which it happens, stability of this wish over time and the factors associated with it. OBJECTIVES: We examined caregivers' wish for death of PwSDs overtime and the factors associated with this wish. METHODS: 215 caregivers of community dwelling PwSDs were surveyed every 4 months for 2 years. Using the mixed-effects multinomial regression model, we assessed the PwSD and caregiver factors associated with caregivers' wish for PwSDs' death. RESULTS: At baseline, 27% caregivers expressed a wish for PwSDs' life to end sooner. Overall, 43% of the caregivers expressed a wish for PwSDs' death at least once during the study period and 11% expressed it consistently. Caregivers' perception of PwSDs' lower quality of life (RRR: 1.05, 95% CI: 1.00, 1.10), higher functional dependency (RRR: 1.1, 95% CI: 1.01, 1.21), eating difficulty (RRR: 2.25, 95% CI: 1.26, 4.04) and suffering (RRR: 1.92, 95% CI: 1.05, 3.52) were associated with this wish. Caregivers who were emotionally close to PwSDs were less likely (RRR: 0.25, 95% CI: 0.11, 0.55) while those who understood that dementia is a terminal illness were more likely (RRR: 2.01, 95% CI: 1.03, 3.92) to express this wish. CONCLUSION: Caregivers' wish for PwSDs' death changed over time and was primarily driven by their perception of PwSDs' poor well-being and awareness of their illness being terminal, indicating a need for increased support in this challenging caregiving context.

The relationship between fear of cancer recurrence and death anxiety among Chinese cancer patients: the serial mediation model.

AIMS: This study aims to investigate the association between fear of cancer recurrence (FCR) and death anxiety (DA) among Chinese cancer patients, while considering the mediating effects of experiential avoidance (EA) and meaning in life (MIL). METHODS: From February to June 2023, convenience sampling was used to select newly diagnosed cancer patients in a tertiary Cancer Hospital in Chinese Hunan Province as the survey objects. A total of 436 cancer patients completed the Fear of Cancer Recurrence Inventory, the Meaning in Life Questionnaire, the Acceptance and Action Questionnaire-II, and the Templer's death anxiety scale. Descriptive analysis and Pearson correlation analysis were conducted using SPSS 28.0 software. Serial mediation analysis was performed by Hayes' PROCESS macro. RESULTS: Gender, age, educational level, marital status, residence, occupation, per capita monthly household income, tumor type, and cancer stage were controlled in the model. The results revealed that fear of cancer recurrence had a significant direct effect on death anxiety (Effect = 0.075, 95% CI: 0.064 to 0.087). Additionally, three indirect pathways were identified: (1) through experiential avoidance (Effect = 0.037, 95% CI: 0.026 to 0.049), (2) through meaning in life (Effect = 0.022, 95% CI: 0.014 to 0.031), and (3) through the serial mediators involving meaning in life and experiential avoidance (Effect = 0.016, 95% CI: 0.010 to 0.023). The total indirect effect of the three mediation paths was 63.56%. CONCLUSION: Fear of cancer recurrence is a significant psychological distress experienced by cancer patients, which not only directly contributes to death anxiety but also may triggers changes, such as experiential avoidance and meaning in life. Ultimately, this comprehensive psychological distress leads to death anxiety.

Factors associated with the place of death of persons with advanced dementia: A systematic review of international literature with meta-analysis.

BACKGROUND: Many individuals with advanced dementia die in hospital, despite preferring home death. Existing evidence of factors affecting their place of death is inconsistent. To inform policies/practices for meeting needs/preferences, systematically establishing the evidence is pertinent, particularly given the exponential rise in advanced dementia prevalence. AIM: To identify factors influencing where people with advanced dementia die. DESIGN AND DATA SOURCES: This systematic review with meta-analysis was registered on PROSPERO (CRD42022366722). Medline, CINAHL, PsycINFO, SocINDEX and a grey literature database, Overton, were searched on 21/12/2022, supplemented by hand-searching/citation tracking. Papers reporting quantitative data on factors associated with place of death in advanced dementia were included and appraised using QualSyst. Data were analysed using random effects with the certainty of evidence determined using the GRADE criteria. RESULTS: Thirty-three papers involving >5 million individuals (mean age = 89.2 years) were included. Long-term care setting deaths were relatively common but hospice deaths were rarer. Marriage's association with home death underscores social networks' importance, while younger age's and male gender's associations with hospital death demonstrate patients' and families' interdependency. Pneumonia/COPD's opposing effects on hospital deaths with cancer/functional impairment highlight the challenges of advanced dementia care. Unlike hospital/nursing home bed availability's lack of effect, capitated funding (fixed-amount-per-patient-per-period) decreased hospital death likelihood. CONCLUSION: This comprehensive review of place of death determinants highlight the profound challenges of advanced dementia end-of-life care. Given that bed capacity did not affect place of death, a capitation-based, integrated palliative care model would appear more likely to meet patients' needs in a resource-constrained environment.

Maybe for unbearable suffering: Diverse racial, ethnic and cultural perspectives of assisted dying. A scoping review.

BACKGROUND: Assisted dying, also commonly known as euthanasia and physician-assisted suicide, is legal in many countries. Interest in assisted dying is growing due to evolving societal understandings of a good death and a desire for choice. Ethico-legal perspectives are well-known, but as societies become more heterogenous, a greater understanding of the perspectives of people from diverse racial, ethnic, and cultural backgrounds is needed. AIM: To explore perspectives of people from diverse racial, ethnic and cultural backgrounds about assisted dying. DESIGN: Scoping review with narrative synthesis. The protocol was registered with Open Science Framework. DATA SOURCES: Medline, CINAHL Complete, PsycINFO and ProQuest Dissertations & Theses Global were searched from inception to May 2023. Citations were independently assessed against inclusion and exclusion criteria. RESULTS: Of the 17 included studies, perspectives of assisted dying were presented according to religion, religiosity, spirituality, race, ethnicity and ancestry. Perspectives were diverse, presenting more as a spectrum, with multiple intersections and interconnections. Support and/or opposition for assisted dying differed according to cultural attributes, but even amongst those with similar cultural attributes, perspectives differed according to life experiences and notions of suffering. CONCLUSION: Perspectives on assisted dying are dynamic and evolving. Even where assisted dying is legalised, individual's cultural attributes contribute to unique perspectives of assisted dying as an end-of-life option. Thus, understanding a person's culture, beliefs, expectations and choices in illness, treatment goals and care is fundamental, extending beyond what may be already considered as part of clinician-patient care relationships and routine advance care planning.

Recognising dying in motor neurone disease: A scoping review.

INTRODUCTION: Timely identification of dying in motor neurone disease enables optimal care, yet we know that healthcare professionals can fail to recognise when death is approaching. Clinical factors help predict the end of life in other terminal conditions. Examining these principles in motor neurone disease would help guide more accurate recognition of this critical phase. AIM: To examine and map out what is known about dying in patients with motor neurone disease, and the recognition of dying by healthcare professionals. DESIGN: A scoping review was conducted following the Arksey and O'Malley methodological framework. DATA SOURCES: Four electronic databases (MEDLINE, Scopus, PsycINFO and CINAHL) and grey literature were searched on the 10th May 2023. Reference lists and citations were also reviewed. RESULTS: From 1512 articles, 13 studies were included. Dyspnoea, anxiety and pain were the most common symptoms associated with the dying phase. Worsening respiratory function, the development of specific new symptoms and deteriorating symptom control suggested approaching death. No studies reported changes in vital signs or biomarkers associated with dying. Barriers to the recognition of dying by healthcare professionals included a rapid and unpredictable terminal decline. CONCLUSIONS: Dying in motor neurone disease is associated with patterns of symptoms and signs, however evidence is limited compared with other terminal conditions and requires further exploration. The characteristic sudden and unpredictable terminal decline is a key barrier to recognition of dying by healthcare professionals. Optimising advance care planning is one approach to navigate these complex, unpredictable clinical situations.

The double awareness of the wish to hasten death and the will to live: A secondary analysis of outlier patients from a mixed-methods study.

BACKGROUND: Patients with serious illness frequently report (temporary) wishes to hasten death. Even until the end-of-life, many patients also harbor a will to live. Although both phenomena are negatively correlated according to some studies, they can also co-exist. Knowledge about the complex relationship between the seemingly opposing wish to hasten death and will to live is limited, but crucial for delivering adequate care and understanding potential requests for assisted dying. AIM: To study the correlation of and explore the relationship between wish to hasten death and will to live over 6 weeks. DESIGN: Observatory, prospective cohort study following a mixed methods design. Analysis of quantitative (Schedules of Attitudes Toward Hastened Death, a visual numerical scale and (additional) validated questionnaires) and qualitative (semi-structured interviews) data with illustrative case descriptions. SETTING/PARTICIPANTS: Patients receiving palliative care with heterogenous underlying diseases from various care settings, before and after an open conversation on a possible desire to die. RESULTS: In n = 85 patients, wish to hasten death and will to live were strongly negatively correlated at three time points (baseline: r(65) = -0.647, p ⩽ 0.001; after 1 week: r(55) = -0.457, p ⩽ 0.001 and after 4-6 weeks: r(43) = -0.727, p ⩽ 0.001). However, visual assessment of scatterplots revealed a small, but substantial number of outliers. When focusing on these outlier patients, they showed clinically relevant changes between baseline and 6 weeks with the wish to hasten death changing in n = 9 (15% of n = 60) and the will to live changing in n = 11 (18.6% of n = 59). Interview data of three outlier cases illustrates unusual trajectories and possible factors which may influence them. CONCLUSIONS: As they can co-exist in different possible combinations, a high wish to hasten death does not necessarily imply a low will to live and vice versa. Patients receiving palliative care can hold such seemingly opposing positions in mind as a form of coping when confronted with an existential threat of serious illness. Therefore, health professionals are encouraged to proactively engage patients in conversation about both phenomena.

Evaluation of a knowledge-attitude-practice model based narrative life education program for community-dwelling older adults: a mixed-methods feasibility study.

BACKGROUND: The global aging population presents challenges that are particularly acute in China. Older Chinese adults' attitudes towards death significantly impact their quality of life. Death education is crucial for promoting positive perspectives on life and death. Narrative education offers a promising approach to facilitating death education. Integrating the Knowledge-Attitude-Practice (KAP) model into death education will enhance the feasibility and acceptability of death education programs. METHODS: This mixed-methods feasibility study included a quasi-experimental trial and semi-structured interviews. Older adults in the intervention group (N = 27) received a 6-week KAP-based narrative life education program in addition to standard community health education; participants in the control group (N = 20) received only the normal community health education. In both groups, attitudes toward death and the meaning of life were assessed at baseline and immediately after the intervention. A post-intervention semi-structured interview and satisfaction survey were also conducted for the intervention group. RESULTS: Forty out of 47 older adults completed the program for an 85.1% retention rate. All of the older adults in the experiment were very satisfied and satisfied with the life education program, and no adverse events were reported. Compared to the control group, participants in the intervention group had a significant decrease in the fear of death (P = 0.028), and substantial improvement in their value of life (P = 0.031), goal of life (P = 0.035), freedom of life (P = 0.003), and the total score for purpose in life (P = 0.017). The qualitative results yielded four themes: profound recognition of life and death, contradiction between thoughts and action, conflict between one's acceptance and others' avoidance, and evaluation of the life education program. CONCLUSIONS: The KAP-based narrative life education program is feasible and acceptable for older Chinese community-dwelling adults. It is also potentially effective in improving attitudes toward death attitudes and the meaning of life in this cohort. TRIAL REGISTRATION: This study was retrospectively registered at China Clinical Trial Registry as ChiCTR2300069551 on 2023-03-20. URL of registration: https://www.chictr.org.cn/showproj.html?proj=183176 .

Social, health and lifestyle-related determinants of older adults' preferences for place of death in South Tyrol, Italy - a cross-sectional survey study.

BACKGROUND: As the global aging population expands, understanding older adults' preferences for place of death becomes pivotal in ensuring person-centered end-of-life care. OBJECTIVE: This study aimed to investigate the influence of sociodemographic, health, and lifestyle-related factors on end-of-life care preferences of older adults in South Tyrol, Italy. METHODS: Employing a cross-sectional design, a population-based survey was conducted with a stratified probabilistic sample of adults aged ≥ 75 years in South Tyrol (Autonomous Province of Bolzano/Bozen, Italy). From a randomly selected sample of 3,600 older adults, participants were invited to respond to a questionnaire that included items on older adults' preferences for place of death and socio-demographic and health- and lifestyle-related factors, including frailty (e.g., PRISMA-7). Descriptive and multinomial logistic regression analyses were performed. RESULTS: The majority (55.3%) of the 1,695 older adults (participation rate: 47%) expressed a preference for dying at home and 12.7% indicated a desire for specialized end-of-life care in a healthcare facility. However, 27.9% refrained from disclosing their end-of-life care preferences. The factors influencing these preferences concerning the place of death included age, native language, educational level, living situation, and community. Compared to the preference of dying at own home or home of family or friends, older adults aged ≥ 85 years (OR = 0.57, P = 0.002) and living in an urban area (OR = 0.40, P < 0.001) were less likely to prefer dying at a hospital, palliative care unit, or hospice. Older adults living alone (OR = 1.90, P < 0.001), Italian-speaking (OR = 1.46, P = 0.03), and those with an educational level above high school (OR = 1.69, P = 0.002) were more likely to prefer dying at a hospital, palliative care unit, or hospice. CONCLUSIONS: End-of-life care preferences among older adults in South Tyrol were associated with socio-demographic, yet not health- and lifestyle-related factors. Recognizing and integrating these preferences is essential for developing, implementing, and evaluating interventions to promote advance care planning and provide effective, patient-centered end-of-life care.

SATISFICING DEATH: Ageing and end-of-life preparation among transgender older Americans.

A good death-a normative ideology of living and dying well that may allow an individual to gain awareness, acceptance, and preparation for death-has captured the attention of researchers, clinicians, and policymakers in recent years. Prior sociological research has uncovered nuanced perspectives of a good death, yet there has been minimal exploration into how marginalised communities reconstruct their own ideals of a good death in response to structural and institutional inequities. Utilising data from 47 in-depth interviews, I examine how transgender older adults perceive and plan for ageing and end-of-life experiences through advance care planning. My analysis reveals transgender older adults' reevaluated notions of a normatively desirable good death for themselves due to existing inequities. Consequently, they actively reconstruct a personalised ideology of death that is adequate enough to meet their end-of-life needs. I further offer the conceptualisation of SATISFICING DEATH, as a process of individuals from marginalised communities reevaluating and reconstructing their own ideologies of a good death that is adequate enough while using resourceful strategies to improve existing social conditions for themselves. These findings highlight the critical need to provide affirming end-of-life care, support, and resources to transgender communities.

The state of transience, and its influence on the wish to die of advanced disease patients: insights from a qualitative phenomenological study.

BACKGROUND: The experience of Wish to Die is common in patients living with Advanced Disease. It has been studied worldwide and qualitative studies have contributed to the understanding of the complexity of the phenomenon of the WTD but a deeper understanding on the individual's views is still needed. The objective of this study was to identify common characteristics of the experience of wish to die in advanced disease. METHODS: A phenomenological study was carried out with multicenter participation of patients with advanced disease who had expressed their wish to die to health professionals. Semi-structured interviews were employed to obtain an in-depth perspective of each patient's lived experience. A phenomenological analysis of the data collected was performed to describe and explore the characteristic aspects of the phenomenon under study. RESULTS: Fourteen patients with advanced disease were interviewed. Most of them had cancer. In the analysis of the patients' accounts of their experiences, three common characteristics were identified: a) experiencing a state of transience; b) the attempt to reconnect with oneself; and c) additional disease-related aspects that influence the wish to die. Patients expressed the need for a safe space to address the wish to die and the importance of receiving care that considers both 'being' and 'doing'. CONCLUSIONS: Patients with advanced disease and wish to die experience a state of transience where the patient lives and ephemeral state of existence. Interventions focused on reinforcing the intrinsic value of the individual emerge as essential components of a compassionate accompaniment of those facing the wish to die.

A bioethical perspective on the meanings behind a wish to hasten death: a meta-ethnographic review.

BACKGROUND: The expressions of a "wish to hasten death" or "wish to die" raise ethical concerns and challenges. These expressions are related to ethical principles intertwined within the field of medical ethics, particularly in end-of-life care. Although some reviews were conducted about this topic, none of them provides an in-depth analysis of the meanings behind the "wish to hasten death/die" based specifically on the ethical principles of autonomy, dignity, and vulnerability. The aim of this review is to understand if and how the meanings behind the "wish to hasten death/die" relate to and are interpreted in light of ethical principles in palliative care. METHODS: We conducted a meta-ethnographic review according to the PRISMA guidelines and aligned with Noblit and Hare's framework. Searches were performed in three databases, Web of Science, PubMed, CINAHL, with no time restrictions. Original qualitative studies exploring the meanings given by patients, family caregivers and healthcare professionals in any context of palliative and end-of-life care were included. A narrative synthesis was undertaken. PROSPERO registration CRD42023360330. RESULTS: Out of 893 retrieved articles, 26 were included in the analysis, accounting for the meanings of a total of 2,398 participants. Several factors and meanings associated with the "wish to hasten death" and/or "wish to die" were identified and are mainly of a psychosocial and spiritual nature. The ethical principles of autonomy and dignity were the ones mostly associated with the "wish to hasten death". Ethical principles were essentially inferred from the content of included articles, although not explicitly stated as bioethical principles. CONCLUSIONS: This meta-ethnographic review shows a reduced number of qualitative studies on the "wish to hasten death" and/or "wish to die" explicitly stating ethical principles. This suggests a lack of bioethical reflection and reasoning in the empirical end-of-life literature and a lack of embedded ethics in clinical practice. There is a need for healthcare professionals to address these topics compassionately and ethically, taking into account the unique perspectives of patients and family members. More qualitative studies on the meanings behind a wish to hasten death, their ethical contours, ethical reasoning, and implications for clinical practice are needed.

Validation of the Collett-Lester fear of death scale in occupational therapy students: psychometric testing and implications for palliative care education.

BACKGROUND: The fear of death is a common experience among healthcare students and professionals that may impact the quality of care provided to patients, particularly those receiving palliative care. The Collett-Lester Fear of Death Scale is a widely used instrument to assess this fear, although its psychometric properties have not been extensively studied in Occupational Therapy students. The present study aimed to validate the Collett-Lester Fear of Death Scale (CL-FODS) in a sample of Occupational Therapy students and to explore its implications for palliative care education. METHOD: A cross-sectional study was conducted to perform psychometric testing of the CL-FODS in Occupational Therapy undergraduate students. Structural validity, internal consistency, and test-retest reliability were analysed. A total of 195 Occupational Therapy students were included in this study. Additionally, the participants completed a brief survey on their experiences and attitudes towards palliative care. RESULTS: The internal consistency was satisfactory (α = 0.888). The exploratory factor analysis to evaluate the internal structure yielded four factors. The model fit indices were: comparative fit index = 0.89, and root mean square error of approximation = 0.06). The test-retest reliability was satisfactory and demonstrated an intraclass correlation coefficient of 0.939. CONCLUSION: The Spanish version of the CL-FODS showed satisfactory psychometric properties; therefore, assessing fear of death in Occupational Therapy students is helpful. This study highlights the importance of addressing fear of death and palliative care education in Occupational Therapy undergraduates to improve future professional attitudes and, consequently, the quality of patient care at the end of life.

Living and dying between cultural traditions in African & Caribbean Heritage families: a constructivist grounded theory.

BACKGROUND: Ethnic differences influence end-of-life health behaviours and use of palliative care services. Use of formal Advance care planning is not common in minority ethnic heritage communities. Older adults expect and trust their children to be their decision makers at the end of life. The study aim was to construct a theory of the dynamics that underpin end-of-life conversations within families of African and Caribbean heritage. This is a voice not well represented in the current debate on improving end-of-life outcomes. METHODS: Using Charmaz's constructivist grounded theory approach, a purposive sample of elders, adult-children, and grandchildren of African and Caribbean Heritage were recruited. In-person and online focus groups were conducted and analysed using an inductive, reflexive comparative analysis process. Initial and axial coding facilitated the creation of categories, these categories were abstracted to constructs and used in theory construction. RESULTS: Elders (n = 4), adult-children (n = 14), and adult grandchildren (n = 3) took part in 5 focus groups. A grounded theory of living and dying between cultural traditions in African and Caribbean heritage families was created. The constructs are (a) Preparing for death but not for dying (b) Complexity in traditions crosses oceans (c) Living and dying between cultures and traditions (d) There is culture, gender and there is personality (e) Watching the death of another prompts conversations. (f) An experience of Hysteresis. DISCUSSION: African and Caribbean cultures celebrate preparation for after-death processes resulting in early exposure to and opportunities for discussion of these processes. Migration results in reforming of people's habitus/ world views shaped by a mixing of cultures. Being in different geographical places impacts generational learning-by-watching of the dying process and related decision making. CONCLUSIONS: Recognising the impact of migration on the roles of different family members and the exposure of those family members to previous dying experiences is important. This can provide a more empathetic and insightful approach to partnership working between health care professionals and patients and families of minority ethic heritage facing serious illness. A public health approach focusing on enabling adult-children to have better end of life conversations with their parents can inform the development of culturally competent palliative care.

What do suicide loss survivors think of physician-assisted suicide: a comparative analysis of suicide loss survivors and the general population in Germany.

BACKGROUND: Physician-assisted suicide (PAS) and voluntary euthanasia remain highly debated topics in society, drawing attention due to their ethical, legal, and emotional complexities. Within this debate, the loss of a loved one through suicide may shape the attitudes of survivors, resulting in more or less favorable attitudes towards this topic. AIMS: This study aims to explore and compare the attitudes towards PAS and voluntary euthanasia in a population of suicide loss survivors and the general population, while also considering socio-demographic factors. METHODS: A total of 529 participants, 168 of whom were survivors of suicide loss, completed an online questionnaire on their attitudes (NOBAS) and opinions (open response format) towards PAS and voluntary euthanasia, as well as regarding their legalization in Germany. The analysis consisted of both quantitative and qualitative components. RESULTS: The entire sample showed positive attitudes towards PAS and voluntary euthanasia in terminally ill persons. Participants were more divided in their attitudes towards PAS in the case of a mental health disorder. Individuals without experienced suicide loss were more liberal regarding legalization in Germany and were more likely to understand the wish for PAS. Survivors of suicide loss were mainly concerned about the consequences for relatives. However, differences between both groups are small. DISCUSSION: The experience of a loss by suicide influences attitudes towards PAS and voluntary euthanasia. Both groups showed an accepting attitude towards PAS and voluntary euthanasia, but also expressed concerns and fears regarding easy accessibility and consequences for grieving relatives.