End-of-life Preferences Research Articles

End-of-life care for the devout Jewish patient.

The Joint Commission emphasizes the importance of cultural competence and effective communication in quality medical care, particularly during end-of-life (EOL), when decisions are influenced by diverse cultural and religious backgrounds. For Orthodox Jewish patients, the philosophical framework used for EOL decision-making may conflict with that used in traditional Western medical ethics. In this paper, we explore the complexities of EOL decision-making for devout Jewish patients and highlight how approaches may differ from a Western ethical framework. This paper aims to familiarize clinicians with EOL preferences of Orthodox Jewish patients, organized into an ethical framework called 'casuistic deontology'. Leading with an open-minded approach emphasizing cultural humility, we explore ways in which integrating this perspective can allow for culturally appropriate and compassionate EOL care. Using a case study methodology, we focus on a 79-year-old Orthodox Jewish male hospitalized with severe injuries. The patient's medical course is analyzed, highlighting how the decisions made by his family in consultation with their Rabbi may differ from the decisions made with a philosophy of a Western ethical framework. This case illustrates the ethical tensions that may arise when Western medical practices intersect with Orthodox Jewish beliefs, particularly regarding brain death, resuscitation, and artificial nutrition. We underscore the need for cultural sensitivity when approaching EOL decision-making, allowing for compassionate and comprehensive care that respects religious perspectives. This paper helps provide a structure for clinicians to navigate the complex EOL care needs for the devout Jewish patient in a manner consistent with their cultural and religious identity.

The association of religion with advance care planning

Personal preferences influence end-of-life (EOL) decision-making and are commonly associated with engagement in the advance care planning process. Completing an advance directive (AD) allows individuals to formally document and legally report their EOL care preferences. This study explored how two aspects of religion—personal religious beliefs and formal religion practices—may be associated with advance care planning. A national sample of healthy adults in the United States aged 50 years and older (n = 514; 74% cisgender women) completed surveys detailing their EOL preferences, advance care planning, personal religious beliefs, and formal religion practices. Using Ordinary Least Squares (OLS), we find that a higher belief in God’s role at EOL was associated with a higher preference for life-prolonging measures. Using logistic regression, those with a higher belief in God’s role at EOL had lower odds of AD completion. Multiple dimensions of religion should be considered when studying health care preferences and decision-making.

Factors associated with family decision-making self-efficacy among family members of patients with advanced cancer in mainland China.

In Chinese culture, family members are the main decision maker on end-of-life (EoL) issues for patients with advanced cancer. Yet little is known about Chinese families' confidence in making EoL decisions and its associated factors. This study aims to investigate the status and associated factors of Chinese family members' confidence in making EoL decisions for patients with advanced cancer. This cross-sectional study used a convenience sample of 147 family members of patients with stage III or stage IV cancer from a tertiary cancer center in Guangzhou, China. The questionnaires included demographic information of patients and their family members, patients' EoL preferences, and the Chinese version of the Family Decision-Making Self-Efficacy (FDMSE) Scale. A total of145 family members (98.64%) completed the questionnaires. The average score of FDMSE was 3.92 ± 0.53. A multiple regression analysis showed that the factors associated with FDMSE included patients' duration of disease, health insurance, participation in EoL decision-making, the expression of unfilled wishes, and family members' employment status. Chinese family members were not confident enough in making EoL decisions for patients with advanced cancer. It is recommended to develop cultural-tailored advanced care planning models to clarify patient preferences and to enhance the family members' self-efficacy in making EoL decisions with or for patients with advanced cancer.

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).

Exploring the Role of Nurses in Advance Care Planning Within Long-Term Care Homes: A Qualitative Study.

Residents in long-term care homes (LTCHs) are often diagnosed with chronic, life-limiting illnesses, and it is now a common site to provide high levels of care and eventual death. There is an urgent need to address communication gaps and uncertainties surrounding resident's end of life preferences. Nurses are well situated to be key facilitators of necessary advance care planning (ACP), ensuring residents have discussions with family, substitute decision-makers and healthcare providers regarding future health and personal care preferences. However, LTCHs present unique challenges for nurses due to not only complex comorbidities but also staffing dynamics. This study explored the experiences and perceptions of Registered Nurses (RNs) and Registered Practical Nurse (RPNs) in LTCHs regarding their role in engaging residents and families in ACP discussions. Qualitative interpretive descriptive methodology was used. Data were collected from two LTCHs in Southern Ontario with a sample of 15 nurses (7 RNs and 8 RPNs). Analysis involved review of semistructured interviews, field notes, and utilizing constant comparison within an inductive approach. Power and authority dynamics in LTCH's was an overarching theme in the data, with four subthemes: (1) Nurses lacking clarity about ACP, (2) nurses' uncertainty regarding their role in ACP, (3) nurses feeling uncomfortable engaging in ACP discussions, and (4) nurses struggling to support families in ACP discussions. Recommendations for nurses, healthcare providers, LTCH administrators, and policy makers include: (1) development of policies which support, from a systemic level, nurses to feel safe while engaging in ACP; (2) reassessing LTCH's hierarchical structure, and clarifying RN, RPN, and interdisciplinary team members roles in ACP; (3) developing culture change that allows a team and person-centered approach to ACP; and (4) providing ongoing education and mentorship for nurses to manage family dynamics and expand their understanding of ACP beyond a biomedical lens.

End of life preferences in the face of Alzheimer[StQuote]s disease: A survey of Americans over 50

End of life preferences in the face of Alzheimer[StQuote]s disease: A survey of Americans over 50

Impacts of an outpatient palliative care team on the end-of-life care at a cancer center in Brazil.

231 Background: It has been demonstrated. that early palliative care improves the quality of life of cancer patients by reducing overtreatment at the end-of-life (EoL) and improving symptomatic control. However, there is a lack of research on the impact of palliative care on the EoL outcomes in developing countries. EoL cancer care varies widely and very few centers evaluate it systematically. Studies suggest that people often prefer dying at home, however, data also shows that most deaths in Latin America occur at hospitals. Methods: This study aimed to analyze the impact of cancer patients’ follow-up by an outpatient palliative care team (OPCT) on the EoL outcomes at a private Multicentric Cancer Center in Brazil. Data were retrospectively retrieved from electronic medical records of patients who were treated at a Brazilian Cancer Center and who died between January 2022 and December 2022. Adults with any type of cancer were considered eligible. The participants were divided into two groups: the OPCT group was followed up by a palliative care multidisciplinary team who regularly evaluated cancer patients during their treatments in an outpatient setting and the No-OPCT group followed up by oncologists with multidisciplinary teams as demanded. Univariate comparisons and multivariate analysis adjusted to the multivariate logistic regression model were performed and p<0.05 was deemed as statistically significant. Results: A total of 1980 patients were included in the study: OPCT (N=640) and No-OPCT (N=1340). Most of the patients in both groups were older than 65 years (61% vs 66%). The groups were well balanced concerning gender (women: 54% vs 46%), and TNM stage (stage IV: 87% vs 89%). Gastrointestinal and breast cancers were the most prevalent in both groups. The rate of home death was 20.2% in the OPCT group, compared to 10.6% in the No-OPCT group, meaning a 2 times greater chance of dying at home when the OPCT was provided (p<0.001). In multivariate analysis, follow-up by the OPCT was the strongest independent predictor of home death. Age, gender, and TNM stage did not influence the place of death. Conclusions: The current study suggests that an active palliative care program in an outpatient care institution, through early conversations about goals of care, prognostic awareness, and EoL preferences may potentially improve the EoL outcomes for patients with cancer, while also reinforcing the need of early referral for a palliative care team. Future studies and ongoing prospective studies in Brazil are needed to validate these findings and also to evaluate the impact of other variables, such as health support systems for home deaths.

A qualitative exploration of goals-of-care discussions with seriously ill patients in Jordan.

This study aims to explore seriously ill patients' experiences during goals-of-care discussions and perspectives of end-of-life (EOL) decision-making in the Middle Eastern country of Jordan. This is a qualitative descriptive study with semi-structured, one-on-one interviews. Settings were 2 large hospitals in Jordan. Patients were a purposeful sample of 14 Arabic-speaking adults who were seriously ill and hospitalized with palliative care needs. Conventional content analysis identified 4 main themes: perceived suffering during serious illness, attitudes toward discussing EOL decision-making, goals of care and preferences for EOL, and actions to enhance EOL decision-making. Disease and treatment burdens and concerns about life, family, and death were sources of suffering during serious illness. What matters most to patients at EOL were alleviating suffering and getting support from family, friends, and care providers. Although patients expressed reluctance and inaction toward EOL decision-making due to uncertainties, lacking awareness, and assumptions of fear, their potential goals of care were to live longer, be with their families, and die with dignity. Jordanians and culturally similar Arabs could benefit from goals-of-care discussions. The proper, culturally sensitive implementation of goals-of-care discussions in Arab populations with similar cultural norms requires raising public awareness and clarifying the legitimacy of goals-of-care discussions, preparing patients and their families for the discussions, and considering individual variations in handling the discussions.

AWARENESS OF PARTNER PREFERENCES FOR END-OF-LIFE ASPECTS AND TREATMENTS IN OLDER ADULT COUPLES

Abstract Surrogate medical decision-making at the end of life is common and the patient’s partner is often the person who must make these critical decisions. The challenge of surrogate medical decision-making is to make decisions that best fit the patient's wishes. This study investigates how accurately older adult couples assess each other’s preferences for eleven end-of-life aspects and three medical treatments in a nationally representative sample of adults aged 58 and over living in Switzerland (N=573). The contribution of factors including end-of-life (EOL) discussion and care planning, self-rated knowledge of partner preferences, and EOL preferences homogamy in scoring higher in accurately assessing partner’s preferences for the end of life is examined. Weighted proportions, assessment accuracy scores and ordinary least squares regressions controlled for individuals’ characteristics are calculated. Results show that 44% of respondents accurately assessed their partners’ preferences for aspects related to medical, psychosocial, anticipatory and burden concerns at end of life, and 62% correctly predicted the preferences for cardiopulmonary resuscitation, life-prolonging measures, and palliative sedation. Respondents whose partner discussed their EOL preferences with them, completed an advance directive, designated them as their healthcare proxy, as well as respondents reporting very/rather good knowledge of their partners’ EOL preferences were more likely to have a higher accuracy score for their partners’ EOL preferences. Being a couple is not enough to assess one’s partner’s EOL preferences correctly. Communication about EOL wishes among the couple and individual EOL care planning should be encouraged, as both improve the assessment accuracy of partners’ EOL preferences.

PERSONALITY TRAITS AND END-OF-LIFE ATTITUDES AND BEHAVIORS IN OLDER ADULTS: EVIDENCE FROM SHARE

Abstract Personality traits (PTs) - Neuroticism, Extraversion, Openness to experience, Agreeableness, Conscientiousness - are related to decision-making styles, as well as to specific end-of-life (EOL) healthcare preferences. Building on this knowledge, our study aims to explore the association of PTs with attitudes and behaviours towards the EOL in general and EOL care planning in particular. Our analyses are based on a paper-and-pencil self-completion questionnaire (n=1’524) administered as part of wave 6 and 7 of SHARE in Switzerland. PTs are measured with the Big-Five inventory ten (BFI-10). Attitudes and behaviours related to EOL are: outlook −avoid thinking about death, think about and discuss EOL preferences−, administrative arrangements −testament, power of attorney−, approval and completion of advance care planning. Results show that older adults with higher scores on openness are more likely to think, plan and discuss EOL, as well as to have made arrangement in advance such as a testament, and a power of attorney. Higher scores on extraversion are linked with having a testament. Individuals who express higher scores on neuroticism more often think about their wishes for EOL, whereas those scoring higher on agreeableness are less likely to be in favour of advance care planning. To conclude, older adults in Switzerland remain unfamiliar with EOL topics, since only individuals with higher openness to experience are more prone to prepare for the EOL. PTs should be taken into account when educating and encouraging people to plan for their EOL.

Analyzing the Concepts of “Good Death” from the Perspective of Nursing: A systematic review and concept analysis

Background: Words such as “dying well,” “dying peacefully,” “appropriate death,” “desired death,” “dignified death” and “good death,” are often used interchangeably. However, there is no clear definition of the concept of "good death" and its defining attributes. Further studies seem to be needed to clarify and develop the concept of “good death” and its attributes. This study aimed to analyze and clarify the concept of “good death”. Methods: A systematic literature search was conducted from 1980 to the end of 2020 using Magiran, SID, Scopus, Science Direct, PubMed, CINAHL, Google Scholar, ProQuest, Wiley, and Ovid, databases. The title, abstract, and keywords of the articles were searched using keywords of “death,” “dying,” “good death,” “quality of death,” “end of life preferences,” “quality of dying,” “attitude to death,” “terminal care,” “dignity,” “successful,” and “peaceful”. The Boolean search operators “AND” and “OR” were employed to merge search results. We also reviewed the reference lists of all retrieved articles to find other pertinent documents. Concept analysis was conducted using Walker and Avant’s eight-step method. The attributes, antecedents, consequences, and uses of the concept of “good death” were recognized. Results: A total of 7207 titles were identified; after elimination of duplicates, screening, and final selection, 36 relevant publications remained for analysis. The most common defining attributes of “good death” included compatibility with socio-cultural norms, personal experiences, being an ongoing process, having control and autonomy, and attention to religion and spirituality. Antecedents of a good death might vary for the dying person, the caregivers, and the family. The most important consequences of “good death” were mainly related to the family of the deceased (satisfaction with care providers, access to supports, respect, integrity, socially appropriate behavior, satisfaction with mourning, and reducing family grief), and those related to the care providers (quick passing of the process of mourning, being sure of doing their best for the patient and family, job satisfaction, a sense of self-worth and integration). Conclusion: The concept of “good death” was a dynamic process that its meaning heavily depends on the peoples lived experiences. It entails having control and autonomy, fulfilling the basic human needs, attention to religion and spirituality, and accompanies positive and peaceful lived experiences for the dying person, his/her family, and the caregivers. To provide patients with "good death" and quality end-of-life care, caregivers especially nurses should develop their knowledge and proficiency in end-of-life care.

Advance Care Planning Experiences Among Sexual and Gender Minority People

Advance care planning (ACP) can promote patient-centered end-of-life (EOL) care and is intended to ensure that medical treatments are aligned with patient's values. Sexual and gender minority (SGM) people face greater discrimination in health care settings compared with heterosexual, cisgender people, but it is unknown whether such discrimination occurs in ACP and how it might affect the ACP experiences of SGM people. To increase understanding of barriers and facilitators of ACP facing SGM individuals. This mixed-methods national study of ACP included a telephone survey of self-identified SGM and non-SGM participants in a nationally representative sample drawn from a larger omnibus national panel by SSRS. Qualitative interviews were conducted with a subset of survey participants who identified as SGM. Data were collected from October 2020 to March 2021. Self-identified SGM. The survey included 4 items from the validated ACP Engagement Survey, adapted to capture experiences of discrimination. Interviews asked about participants' experiences with ACP, including the appointment of medical decision-makers, sharing preferences, and experiences within the health care system more broadly. A total of 603 adults participated in the survey, with 201 SGM individuals (mean [SD] age, 45.7 [18.7] years; 101 [50.2%] female; 22 [10.9%] Black, 37 [18.4%] Hispanic, and 140 [69.7%] White individuals) and 402 non-SGM individuals (mean [SD] age, 53.7 [19.2] years; 199 [49.5%] female; 35 [8.7%] Black, 41 [10.2%] Hispanic, and 324 [80.6%] White individuals). Regarding reasons for not completing ACP, SGM respondents, compared with non-SGM respondents, were more likely to say "I don't see the need" (72 [73.5%] vs 131 [57.2%], P = .006) and "I feel discriminated against by others" (12 [12.2%] vs 6 [2.6%], P < .001). Of 25 completed interviews among SGM participants, 3 main themes were identified: how fear and experiences of discrimination affect selection of clinicians and whether to disclose SGM identity; concerns about whether EOL preferences and medical decision-makers would be supported; and a preference to discuss EOL decisions and values outside of clinical settings. This study found that fear of disclosing sexual orientation or gender identity information and discrimination are important barriers to ACP for SGM in clinical settings, but discussions of preferences and values still occur between many SGM people and medical decision-makers. More SGM-specific patient-centered care might better support these discussions within the health care system. Furthermore, health systems can facilitate improved engagement by supporting clinician sensitivity training, including guidance on documentation and requirements.

Code status transitions in patients with high-risk acute myeloid leukemia

AbstractPatients with high-risk acute myeloid leukemia (AML) often experience intensive medical care at the end of life (EOL), including high rates of hospitalizations and intensive care unit (ICU) admissions. Despite this, studies examining code status transitions are lacking. We conducted a mixed-methods study of 200 patients with high-risk AML enrolled in supportive care studies at Massachusetts General Hospital between 2014 and 2021. We defined high-risk AML as relapsed/refractory or diagnosis at age ≥60. We used a consensus-driven medical record review to characterize code status transitions. At diagnosis, 86.0% (172/200) of patients were “full code” (38.5% presumed, 47.5% confirmed) and 8.5% had restrictions on life-sustaining therapies. Overall, 57.0% of patients experienced a transition during the study period. The median time from the last transition to death was 2 days (range, 0-350). Most final transitions (71.1%) were to comfort measures near EOL; only 60.5% of patients participated in these last transitions. We identified 3 conversation types leading to transitions: informative conversations focusing on futility after clinical deterioration (51.0%), anticipatory conversations at the time of acute deterioration (32.2%), and preemptive conversations (15.6%) before deterioration. Younger age (B = 0.04; P = .002) and informative conversations (B = −2.79; P < .001) were associated with shorter time from last transition to death. Over two-thirds of patients were “presumed full code” at diagnosis of high-risk AML, and most experienced code status transitions focused on the futility of continuing life-sustaining therapies near EOL. These results suggest that goals-of-care discussions occur late in the illness course for patients with AML and warrant interventions to increase earlier discussions regarding EOL preferences.

Use, usability, and impact of a card-based conversation tool to support communication about end-of-life preferences in residential elder care \u2013 a qualitative study of staff experiences

BackgroundProactive conversations about individual preferences between residents, relatives, and staff can support person-centred, value-concordant end-of-life (EOL) care. Nevertheless, prevalence of such conversations is still low in residential care homes (RCHs), often relating to staff’s perceived lack of skills and confidence. Using tools may help staff to facilitate EOL conversations. While many EOL-specific tools are script-based and focus on identifying and documenting treatment priorities, the DöBra card tool is developed to stimulate reflection and conversation about EOL care values and preferences. In this study, we explore staff’s experiences of use, usability, and perceived impact of the DöBra cards in supporting discussion about EOL care in RCH settings.MethodsThis qualitative study was based on data from two participatory action research processes in which RCH staff tested and evaluated use of DöBra cards in EOL conversations. Data comprise 6 interviews and 8 group meetings with a total of 13 participants from 7 facilities. Qualitative content analysis was performed to identify key concepts in relation to use, usability, and impact of the DöBra cards in RCH practice.ResultsBased on participants’ experiences of using the DöBra cards as an EOL conversation tool in RCHs, we identified three main categories in relation to its usefulness. Outcomes of using the cards (1) included the outlining of content of conversations and supporting connection and development of rapport. Perceived impact (2) related to enabling openings for future communication and aligning care goals between stakeholders. Use and usability of the cards (3) were influenced by supporting and limiting factors on the personal and contextual level.ConclusionsThis study demonstrates how the DöBra cards was found to be useful by staff for facilitating conversations about EOL values, influencing both the content of discussion and interactions between those present. The tool encouraged reflection and interaction, which staff perceived as potentially helpful in building preparedness for future care-decision making. The combination of providing a shared framework and being adaptable in use appeared to be key features for the DöBra cards usability in the RCH setting.

Differences in Attitude towards End-Of-Life Care among Haemodialysis Patients and their Family Members in Two Malaysian Hospitals

INTRODUCTION: End-of-life (EOL) care has become an important topic of discussion in those with chronic illness, especially in End Stage Renal Disease (ESRD) patients on dialysis. This study explored attitudes towards the EOL care among haemodialysis patients and compared them with the patients’ family members. MATERIALS AND METHODS: The study was a cross-sectional descriptive study conducted in two tertiary hospitals in Malaysia. The data was collected by using a survey questionnaire from 164 participants which consisted of 82 pairs of patients and their relatives. RESULTS: ‘Patient’ and ‘family’ groups demonstrated differences in their preferences regarding EOL care options. Family members group favoured cardiopulmonary resuscitation (81.7% vs 41.4%) (p &lt;0.001), endotracheal intubation (80.5% vs 43.9%) (p = 0.989) and nasogastric tube feeding (87.8% vs 67%) (p = 0.001) more than patients themselves. The physician was the most nominated surrogate decision-maker by the patient (91.5%). Majority of the patients (57.3%) felt uncomfortable discussing EOL care options. There was significant correlation between duration of dialysis and patients’ EOL preferences where patients less than 5 years on haemodialysis favoured CPR (55.9% vs 31.3%; p = 0.026), intubation (55.9% vs 35.4%) and nasogastric tube feeding (82.3% vs 56.3%; p = 0.013) compared to patients who had been on haemodialysis for 5 years or longer. CONCLUSION: This study demonstrated significant differences between the attitudes of the patients and their relatives regarding EOL care preferences.

Location of death and hospice use in children with cancer varies by type of health insurance.

Disparities in end-of-life (EOL) care for children with cancer remain understudied. We addressed this gap by examining patterns of EOL care, with a focus on location of death and hospice utilization. We used MarketScan - a nationally representative dataset with Medicaid and commercial claims to conduct a retrospective observational study of children with cancer who died between 2011 and 2017 at age ≤21years. We examined rates of (a) home death, (b) hospice utilization, (c) and medically intense interventions in the last 30days (e.g., intubation). Of the 1492 children in the cohort, 44% had Medicaid and 56% commercial insurance; 71% carried a solid tumor diagnosis, and 37% were between the ages of 15 and 21years at the time of death. Forty percent died at home; children with Medicaid were less likely to die at home (relative risk [RR] = 0.82, 95% confidence interval [CI]: 0.73-0.92; reference: commercial). Forty-five percent enrolled in hospice, for a median of 2days. Hospice enrollment rates did not vary with insurance. However, children with Medicaid spent less time enrolled (incidence rate ratio [IRR] = 0.22, 95% CI: 0.17-0.27). Among children with Medicaid, Black children were less likely to die at home (RR = 0.69, 95% CI: 0.52-0.92) and enroll on hospice (RR = 0.71, 95% CI: 0.55-0.91) than non-Hispanic White children. Medically intense interventions did not vary with insurance or race. Only 40% of children with cancer die at home, and the duration of hospice enrollment is short. EOL care varies significantly with insurance. It is imperative that we determine if these patterns and disparities represent EOL preferences, provider biases, or differences in quality or availability of hospice.

Change of Health and Change of Preferences on Life-Sustaining Treatment: Evidence From a Longitudinal Study

Background: Decision-making for end-of-life (EoL) care is not a one-off choice. Older adults may change their preferences for life-sustaining treatments along their health continuum. Guided by prospect theory, we hypothesize that perceived change in health status is a driver behind preference changes. Method: Health and Retirement Study Wave 2012 to 2018 data. Sample is limited to 5,646 older adults who reported whether they requested to limit treatment in living will during two waves of data. Two possible preference changes were tested: from limited to default care and from default to limited care. Change in health status was indicated by changes (1=same, 2=improve, 3=decline) in physical pain, general health, activities of daily living, instrumental activities of daily living (IADL), and number of diagnoses. Multilevel logistic regression models were used to understand how change of health status was related to changes in EoL preferences. Results: 700 older adults changed their preferences some time in 8 years. Those who changed their preferences are more likely to be older and not married, and to have lower socioeconomic background. Older adults who experienced deteriorated pain levels were more likely to change their preferences from default to limited care (OR=3.77, p<.05) and less likely to change from limited to default care (OR=0.63, p<.05). Change in IADL is also a significant predictor of change of preferences. Implication: The findings highlight the importance of periodic reassessment of EoL care preferences with older adults. We discuss policy and practice implications regarding health changes as underlying mechanisms of preference changes.

Review of Religious Variables in Advance Care Planning for End-of-Life Care: Consideration of Faith as a New Construct

Religion and spirituality have long been considered important social determinants of human health, and there exists an extensive body of research to support such. End-of-life (EOL) may raise complex questions for individuals about religious and spiritual (R/S) values guiding advance care planning (ACP) and EOL care decisions, including the provision of spiritual care. This commentary will review the history and current national trends of ACP activities for EOL, principally within the United States. It will describe the relationship of religious variables and the attributes of selected research instruments used to study religious variables on ACP and EOL preferences. The review also summarizes unique ACP challenges for patients with neurocognitive disorders and severe mental illness. Findings disclose that higher levels of religiosity, reliance on religious coping, conservative faith traditions, and “belief in God's control over life's length and divine intervention have lower levels of ACP and more intensive EOL care preferences, although the provision of spiritual spiritual care at EOL mitigates intensive EOL care. Based upon the curated evidence, we propose an epistemological justification to consider “faith” as a separately defined religious variable in future ACP and EOL research. This review is relevant to geriatric psychiatrists and gerontological health care professionals, as they may be part of multidisciplinary palliative care teams; provide longitudinal care to patients with neurocognitive disorders and severe mental illness; and may provide diagnostic, emotional, and therapeutic services for patients and families who may struggle with EOL care decisions.

Values and preferences for future end-of-life care among the indigenous Sámi.

Research with Indigenous peoples internationally indicates the importance of socio-cultural contexts for end-of-life (EoL) preferences. However, knowledge about values and preferences for future EoL care among the Indigenous Sámi is limited. We investigated if and how a Swedish adaptation of the English-language GoWish cards, DöBra cards, supports reflection and discussion of values and preferences for future EoL care among the Sámi. This qualitative study is based on interviews with 31self-defined Sámi adults who used DöBra cards at four events targeting the Sámi population, between August 2019 and February 2020. Using directed content analysis, we examined aspects of interviews addressing Sámi-specific and Sámi-relevant motivations for choices. Data about individuals' card rankings were collated and compiled on group level to examine variation in card choices. All 37 pre-formulated card statements were ranked as a top 10 priority by at least one person. The cards most frequently ranked in the top 10 were a wild card used to formulate an individual preference and thus not representing the same statement, and the pre-formulated card 'to have those I am close to around me'. Reactions to interviews varied, with some participants commenting on the taboo-laden nature of discussing EoL issues, although many commented positively about EoL conversations in general, and the benefit of using the DöBra cards in particular. We categorised reasoning about Sámi-specific and Sámi-relevant values and preferences under the themes: Attributes of contemporary Sámi culture, Spirituality, Setting for death, Maintaining identity, Preferences related to death, Dying and EoL care and After death. The DöBra cards were found to be easy-to-use, understandable and a flexible tool for initiating and supporting conversations about EoL values and preferences. The open formulations of cards, with wild cards, enable discussions about individual values and preferences, with potential to reflect life as a Sámi in Sweden.

Preferences for end-of-life care settings among the healthy population in Israel-Related socio-demographic variables.

Preferences for end-of-life (EoL) care settings is of considerable interest for developing public health policy and EoL care strategies. Culture, the cause of illness, and background characteristics may impact preferences. The present study aimed to explore preferences for EoL care settings: homes, hospitals, and inpatient hospice units among the general healthy population in Israel. Possible associations between the setting preferences and socio-demographic characteristics were also examined. A cross-sectional survey was conducted among 311 healthy adults who were recruited through a representative internet panel of the Israeli population using the Israeli census sampling method. The sex ratio was almost 1:1 with 158 women (50.8%) and 153 men (49.2%). All participants completed self-report measures using an online survey system. The questionnaires assessed sociodemographics and preferences for EoL care settings. This survey revealed that 52.1% of the participants expressed preference for being cared for at home rather than in an inpatient hospice unit, 40.8% expressed being cared for at home rather than in a hospital, while 36.7% had no preference regarding being cared for in hospital or in a hospice unit. Among the socio-demographic variables, only age and gender were found to be significantly associated with preferences for EoL care settings. The present study highlights the need to be cautious when regarding home as the preferred EoL care setting, as some individuals declared that they would prefer EoL hospice/hospital care. Age and gender should be considered when discussing and tailoring strategies regarding EoL preferences.