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The Influence of Culture on End-of-Life Decision Making
Abstract
In their research, scholars have documented racial and ethnic differences in end-of-life care preferences, which have translated into cultural barriers. However, few studies have explained the racial differences. In the present study, focus groups with semi-structured follow-up interviews were utilized to elicit explanations for variance in decision making in a sample of Black and White community-dwelling residents. Participants identified specific cultural beliefs, values, and communication patterns that can be used to promote cultural competency among practitioners who provide care at end of life.
... In one study Black individuals were more likely to characterize hospice as 'giving up' compared with white individuals who viewed it as symptom management and comfort care. 7 Additionally, research suggests a gap in knowledge between Black and white older adults about hospice, and that Black individuals' religious or spiritual beliefs may conflict with perceived goals of hospice. 7,8 For example, Black individuals are more likely to believe in a 'higher power' or in miracles related to their health condition, compared with white patients who see their religion or spirituality as more of a support than a guide for decisions. ...
... 7 Additionally, research suggests a gap in knowledge between Black and white older adults about hospice, and that Black individuals' religious or spiritual beliefs may conflict with perceived goals of hospice. 7,8 For example, Black individuals are more likely to believe in a 'higher power' or in miracles related to their health condition, compared with white patients who see their religion or spirituality as more of a support than a guide for decisions. 7 Across racial identities, people share beliefs that hospice is for when there is no hope, and that medical care is not as good at home as in the hospital. ...
... 7,8 For example, Black individuals are more likely to believe in a 'higher power' or in miracles related to their health condition, compared with white patients who see their religion or spirituality as more of a support than a guide for decisions. 7 Across racial identities, people share beliefs that hospice is for when there is no hope, and that medical care is not as good at home as in the hospital. 9 The belief that hospice equals death is echoed across literature-many do not understand that hospice is available to anyone with a prognosis of ≤ 6 months, but rather believe it is only for immediate, final days of life. ...
Background: About half of hospice-eligible adults die without hospice each year. Misconceptions about hospice are frequently identified as barriers to utilization, but hospice perceptions are not well documented. Objectives and Setting/Subjects: To examine perceptions of hospice (initial and post-enrollment) among 90 U.S. patients/families actively enrolled in a large, metropolitan hospice in Texas, and to identify factors associated with participant perceptions. Design and Measurement: Concurrent mixed methods and cross-sectional design collecting data via research questionnaire with Likert scales and open-ended questions. Wilcoxon signed-rank test determined differences between recall of initial hospice perceptions at time of referral and perceptions while actively receiving services; Fisher’s exact and Kruskal-Wallis tests were used to examine bivariate relationships between perceptions of hospice and satisfaction with physician communication and demographic variables. Qualitative statements were analyzed using an inductive, content analysis approach. Results: There was a significant difference between participants’ perceptions of hospice recalled from initial conversations compared with current perceptions following hospice enrollment (z = −6.44, P < .01). Initial perceptions of hospice were significantly related to satisfaction with physician communication ( P = .011) and diagnosis ( P = .019). Qualitative themes range from negative (ie hospice = death) to positive (ie comfort, support, loving staff) with 65.6% of participants demonstrating positive increases in understanding. Conclusion: Participants’ perceptions of hospice were positively associated with satisfaction with physician communication prior to hospice enrollment, and potentially impacted by the experience of care itself. During hospice discussions, clinicians should elicit patient and family perceptions in addition to providing descriptions of eligibility and services.
... At the same time the importance of local context and culture has increasingly been emphasised in healthcare, and this is highly relevant to end-of-life decision-making [3][4][5]. Chinese culture has developed from Taoism, Confucianism and Buddhism, which has influenced traditional Chinese medicine (TCM) [6]. However, Western medicine has had an increased influence on healthcare in China since the early twentieth century, although TCM still plays an important role and is planned to increase in the future [7,8]. ...
... Cultural beliefs and values are critical for people's preferences and how they manage end-of-life. Culture can be described as a complex, multifaceted phenomenon shaped by interactions between socio-demographic factors and continuous processes of redefinition deriving from historical experiences and social realities [5]. In almost all developed and some developing countries, palliative care (like other forms of healthcare) has increased in complexity at the same time as the work of healthcare professionals is expected to be evidence-based. ...
... By critically reflecting on taken-for granted assumptions a greater understanding of both practice and the evidence available for use in practice can be acquired [58]. Knowledge and awareness of culture are therefore a necessity for professionals in palliative care who are to meet the needs of dying patients and their families of different cultural descent [5,6]. In this review, three of the four Chinese studies described Chinese culture as a background to the study [35,37,38], but none of the Swedish studies takes account of cultural aspects. ...
Background
Despite the increasing longevity of the world’s population, with an unprecedented rise in the number of people who need palliative care (PC), there has been sparse research regarding palliative care for older people, especially when it comes to comparison of PC between healthcare systems and cultures. The aim of this systematic scoping review was to identify the characteristics of the body of literature and to examine the knowledge gaps concerning PC research for older people (> 60 years) in two healthcare systems and cultures, mainland China and Sweden.
Methods
The guidelines PRISMA (Preferred Reporting Items for Systematic Reviews), and PICOS (Patient/population, Intervention, Comparison/control, and Outcome) were used. Empirical studies on patients 60 years or older, next of kin or staff participating in a palliative care intervention or setting were included. They were conducted in mainland China or in Sweden during 2007–2019, were published in English and were extracted from seven databases: Embase, PubMed, Scopus, Cinahl, PsycInfo, Academic Search Complete and Cochrane Library. Two independent researchers conducted the selection of studies, data extraction and methodological evaluation. Any disagreements were resolved in consultation with a third researcher. The analysis was manifest directed content analysis based on PICOS domains.
Results
Of the 15 studies, four were from mainland China and 11 from Sweden. Both countries included older patients with cancer but also other end-stage diseases such as heart failure and dementia. The studies differed in design, method and the content of the interventions. The study in China based on traditional Chinese medicine concerns traditional Chinese folk music. The six qualitative studies from Sweden were evaluations of five interventions.
Conclusions
Despite the high age of the participating patients, there was no focus on an ageing perspective concerning palliative care. To adapt to the changes taking place in most societies, future research should have increased focus on older persons’ need for palliative care and should take account of issues concerning research ethics, ethnicity and culture.
Registered in Prospero
CRD42020078685, available from.
... "Criteria help because you don't feel that the limit you set is just your decision, but rather a broadly shared directive." (Participant 3, age range [41][42][43][44][45][46][47][48][49][50] One participant explained that, because decisions on invasive procedures had to be made rapidly, the guidelines legitimized their decisions and ensured physicians' protection: ...
... We went as far as to consider the criterion of futility." (Participant 8, age range [41][42][43][44][45][46][47][48][49][50] The core question participants asked themselves was whether admission to the ICU would meet any criteria of medical futility. One participant explained that, following a futility principle, they would ensure that decisions would not change even if resources were available: ...
... But we also told ourselves that we should do neither useless things nor heroic ones, knowing that we are facing something serious." (Participant 3, age range [41][42][43][44][45][46][47][48][49][50] Participants cited frailty, diagnosis, and prognosis as better criteria compared to age to inform ICU admission decisions: ...
Aims: One of the major ethical challenges posed by the Covid-19 pandemic comes in the form of fair triage decisions for critically ill patients in situations where life-saving resources are limited. In Spring 2020, the Swiss Academy of Medical Sciences (SAMS) issued specific guidelines on triage for intensive-care treatment in the context of the Covid-19 pandemic. While evidence has shown that the capacities of intensive care medicine throughout Switzerland were sufficient to take care of all critically ill patients during the first wave of the outbreak, no evidence is available regarding the acceptance of these guidelines by ICU staff. The aim of this qualitative study was to explore the acceptance and perceived implementation of the SAMS guidelines among a sample of senior physicians involved in the care of Covid-19 patients in the Canton of Ticino. Specific objectives included capturing and describing physicians' attitudes toward the guidelines, any challenges experienced in their application, and any perceived factors that facilitated or would facilitate their application.
Methods: We conducted face-to-face and telephone interviews with a purposive sample of nine senior physicians employed as either head of unity, deputy-head of unit, or medical director in either one of the two Covid-19 hospitals in the Canton of Ticino during the peak of the outbreak. Interviews were transcribed verbatim and thematically analyzed using an inductive approach.
Results: We found that participants held different views regarding the nature of the guidelines, saw decisions on admission as a matter of collective responsibility, argued that decisions should be based on a medical futility principle rather than an age criterion, and found that difficulties to address end-of-life issues led to a comeback of paternalism.
Conclusions: Results highlight the importance of clarifying the nature of the guidelines, establishing authority, and responsibility during triaging decisions, recognizing and addressing sources of interference with patients' autonomy, and the need of a cultural shift in timely and efficiently addressing end-of-life issues.
... However, no in-depth work had been conducted in Malaysia to obtain further insights into their knowledge, attitude and practice (KAP) towards advance care planning. Moreover, recent studies on younger adults have highlighted the needs to engage younger adults in ACP [13,14] as previous studies [15][16][17][18][19] were mainly conducted on adults aged > 50 years with terminal illnesses or chronic diseases. Hence, there is a need to include younger people when exploring the KAP regarding ACP. ...
... Several instruments have been developed to assess the views, knowledge, attitude and practice of ACP: the 'Cultural values and belief scale' [16], 'The ethnicity and attitudes toward advance care directives questionnaires' [15] and the 'Asian American quality of life survey' [23]. These instruments were primarily tested and used in the United States [23], Korea [24], Japan [25] and Hong Kong [26]. ...
... As decision making in ACP involved a complicated process [19], various instruments have been developed to measure the different aspects of ACP. Some instruments have been developed to elicit information regarding attitude towards patient autonomy [15] and to examine the difference in influence of cultural values and beliefs among African and White Americans towards ACP [16]. Other instruments were developed and validated to evaluate behaviour change as a result of an ACP intervention [17][18][19]43] and to assess the role of surrogate decision makers of patients with chronic illness in ACP [44]. ...
Background
There is a growing interest among the developing countries on advance care planning (ACP) due to the reported benefits of planning ahead in the developed countries. Validated instruments in various languages have been developed to facilitate study on the views of public prior to its implementation. However, instrument to explore the views on ACP in Malay has not been developed and validated yet, even though Malay is spoken extensively by approximately 220 million people in the Malay Archipelago. There is also a need for instrument in Malay language to facilitate the assessment of knowledge, attitude and practice (KAP) of Malaysians regarding ACP. Therefore, the aim of this study was to validate the psychometric properties of the Malay Advance Care Planning Questionnaire (ACPQ-M).
Methods
The ACPQ was translated according to international guidelines. This validation study was conducted from January to June 2018. Participants who were ≥ 21 years old, and able to understand Malay were recruited from an urban primary care clinic and a tertiary education institution in Malaysia. A researcher administered the ACPQ-M to participants via a face-to-face interview at baseline and 2 weeks later. Each interview took approximately 10–20 min.
Results
A total of 222/232 participants agreed to participate (response rate = 96.0%). Exploratory factor analysis and confirmatory factor analysis found that the ACPQ-M was a 4-factor model. The Cronbach’s α values for the four domains ranged from 0.674–0.947. Only 157/222 participants completed the test-retest (response rate = 71%). At test-retest, quadratic weighted kappa values for all domains ranged from 0.340–0.674, except for two domains which ranged from − 0.200-0.467.
Conclusions
The ACPQ-M was found to be a 4-factor model, and a valid and reliable instrument to assess the KAP regarding ACP. This instrument can contribute to profound understanding of the KAP of Malaysians regarding ACP, and assist policy makers in determining the readiness for legislation of ACP in Malaysia.
... The majority of participants stated that ACP discussions are difficult in China because they deal with emotional and survival themes surrounding illness and death. Ethnicity and race group membership provides an important cultural context about how individuals view life and death and influences their end-of-life decision-making [24]. The cultural norm, especially among the Chinese and the older generation, is that discussing death will bring "doom" and is therefore unsuitable for discussion [25]. ...
... As Karen Bullock's study indicated that individualism, independence, self-reliance, and future orientation were valued by White older individuals. Furthermore, Whites preferred to make end-of-life care decisions without the influence of family members, and they viewed hospice care favorably [24]. ...
Objectives
Advance care planning (ACP) enables people to define goals and preferences for future medical treatment and care. Despite universal recognition of the importance of ACP for people with Alzheimer´s disease (AD) internationally, there is little support for its implementation in China. The viewpoint of family caregivers is crucial in making clinical decisions about AD. Therefore, it’s critical to understand the family caregivers’ perspectives on ACP in order to promote its practice among people with AD in China.
Methods
Seventeen family caregivers of people with AD were purposively selected in three communities in Guangzhou. Semi-structured interviews were conducted to collect data and the data were analyzed using the thematic analysis.
Results
Three main themes were extracted: ①Attitudes toward ACP including positive and negative attitudes; ②Social pressure influencing ACP decision; ③Behavioral willingness of the implementation of ACP.
Conclusions
Attitudes, social pressure, and behavioral willingness characterized the behavioral intentions of family caregivers of people with Alzheimer’s disease. It is recommended to strengthen efforts to publicity of advance care planning and promote legislation in China.
... Values-and the strength of their clarity-act as psychological guideposts for terminally ill individuals to choose a path forward amidst uncertainty [34,35]. Culture frequently serves as a constraining factor, narrowing the possible values that influence a decision [36][37][38]. Overwhelmingly, individuals who have chosen MAID report basing their decisions on the values of autonomy, control, and choice [39,40]. However, we lack broad understanding of how and why people in the United States integrate these values into their aid in dying decision-making processes [41,42]. ...
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.
... Considering that achieving ACP in the elderly requires older people's awareness and acceptance evaluation, so far, numerous instruments have been developed for evaluating views as well as advanced care planning. The most important instruments include the Cultural values and beliefs scale designed in the United States [25], The ethnicity and attitudes toward advance care directives questionnaires designed in the South Korea [26], Asian American quality of life survey designed in China [27], and Advance Care Planning Questionnaire (ACPQ) designed in Malaysia [28]. ACPQ is one of the instruments for examining the awareness and acceptance of the patient for receiving end-of-life care. ...
Introduction
Advanced age is associated with life-threatening conditions at the end of life. Many of these persons at the end of their lives cannot make decisions because of the variable consciousness. They are able to make decisions and identify their care priorities, in a process called advanced care planning. So, an instrument is required for investigating ACP of the elderly population. This study was performed to determine the psychometric properties of the Persian version of the advanced care planning questionnaire(ACPQ) in elderly population referring to Tehran.
Method
This methodological study was performed in five hospitals in 2021–2022. A total of 390 eligible elderlies were included. The psychometric assessment including translation, face validity, content validity were performed Alsothe exploratory factor analysis and confirmatory factor analysis were assessed. Reliability were done by internal consistency by assessing Cronbach alpha and stability was performed using test-retest.
Results
The face validity of the instrument was performed with minor changes. The content validity index for all of the items was above 0.79. In EFA four factors was extracted also CFA showed that the four-factor model has a good fit of the data (RMSEA: 0.04; NFI: 0.97 CFI: 0.99; IFI: 0.99; RFI: 0.96; AGFI: 0.87; GFI 0/90; standardized RMR: 0.02). Cronbach alpha and ICC were 0.72–0.94 and 0.85–0.96, respectively.
Conclusion
The Persian version of the advance care planning questionnaire has desirable psychometric properties for measuring the advanced care planning of the elderly population. In addition, healthcare providers in Iran can employ this questionnaire in their practice and research.
... It not only relieves stress, but improves the dying individual's sense of well-being, facilitates meaningful interactions, and promotes patient-centered care, resulting in more satisfying outcomes for all involved [41]. However, discussing one's needs or concerns regarding end-of-life care or hopes and wishes for the family can be difficult due to societal taboos around death and dying, making it a challenging topic to confront [9]. In addition, many FCs feel overwhelmed by the end-of-life situation; and the rapid disease progression of their loved one often leaves them at a loss for words or questions to ask. ...
Background
This study extended the original Dignity Therapy (DT) intervention by including partners and family caregivers (FCs) of terminally-ill cancer patients with the overall aim of evaluating whether DT can mitigate distress in both patients nearing the end of life and their FCs.
Methods
In this multicenter, randomized controlled trial (RCT), a total of 68 patients with life expectancy < 6 months and clinically-relevant stress levels (Hospital Anxiety Depression total score; HADStot ≥ 8) including their FCs were randomly assigned to DT, DT + (including their FCs), or standard palliative care (SPC) in a 1:1:1 ratio. Study participants were asked to complete a set of questionnaires pre- and post-intervention.
Results
The coalesced group (DT and DT +) revealed a significant increase in patients’ perceived quality of life (FACIT-Pal-14) following the intervention (mean difference 6.15, SD = 1.86, p < 0.01). We found a statistically significant group-by-time interaction effect: while the HADStot of patients in the intervention group remained stable over the pre-post period, the control group’s HADStot increased (F = 4.33, df = 1, 82.9; p < 0.05), indicating a protective effect of DT. Most patients and their FCs found DT useful and would recommend it to other individuals in their situation.
Conclusions
The DT intervention has been well-received and shows the potential to increase HRQoL and prevent further mental health deterioration, illness burden and suffering in terminally-ill patients. The DT intervention holds the potential to serve as a valuable tool for facilitating end-of-life conversations among terminally-ill patients and their FCs. However, the implementation of DT within the framework of a RCT in a palliative care setting poses significant challenges. We suggest a slightly modified and less resource-intensive version of DT that is to provide the DT inventory to FCs of terminally-ill patients, empowering them to ask the questions that matter most to them over their loved one’s final days.
Trial registration
This study was registered with Clinical Trial Registry (ClinicalTrials.gov -Protocol Record NCT02646527; date of registration: 04/01/2016). The CONSORT 2010 guidelines were used for properly reporting how the randomized trial was conducted.
... (Briggs, 2020 ). ...
This scoping review aimed to explore what is known about palliative and End-of-Life (EOL) care access by immigrants with culturally and linguistically diverse (CALD) background living in high-income Organization for Economic Co-operation and Development (OECD) countries. CaLD immigrants have low utilization of palliative care services with patients’ family members taking up the role of caring, leading to immigrants not fully benefiting from the specialized services that are offered to alleviate suffering and promote quality of life. While there is some research in this area mainly in Europe, it cannot be said about all high-income OECD countries. Achieving person-centered care in high-income countries, requires identifying and addressing barriers to care access, especially by immigrants with CaLD background. Five-stage methodological framework by Arksey and O’Malley was used to undertake the review. Immigrants in OECD countries experience challenges in accessing palliative and EOL care services. The review also identified limited literature on the subject and establishes need for more research on the subject.
... So far, numerous instruments have been developed for evaluating views as well as advanced care planning. The most important instruments include the Cultural values and beliefs scale designed in the US (21), The ethnicity and attitudes toward advance care directives questionnaires designed in the South Korea (22), Asian American quality of life survey designed in China (23), and Advance Care Planning Questionnaire (ACPQ) designed in Malaysia (24). ACPQ is one of the instruments for examining the awareness and acceptance of the patient for receiving end-of-life care. ...
Introduction: advanced age is associated with life-threatening conditions at the end of life. Many of these patients at the end of their lives cannot make decisions because of the variable status of the level of consciousness. When these individuals are able to make decisions and identify their care priorities, in a process called advanced care planning, they plan about their preferences for end-of-life care. Accordingly, a local or native instrument is required for investigating ACP of the elderly. This study was performed to determine the reliability and validity of the Persian version of the advanced care planning questionnaire of the elderly referring to healthcare centers in Tehran city.
Method: this methodological study was performed in five hospitals of Tehran in 2021-2022. A total of 390 eligible elderlies were included. After receiving the permission from the instrument developer, double back translation, face validity was done using face-to-face interview with 10 elderlies, while the qualitative content validity was performed through surveying 10 experts in palliative care. The construct validity was performed using exploratory factor analysis and confirmatory factor analysis. Internal consistency was captured using Cronbach alpha coefficient, and stability was performed using test-retest method to evaluate the reliability of the instrument.
Results: the face validity of the instrument was performed with minor changes in the wording of item 12. The content validity ratio for all of the items was above 0.79, and no item was eliminated. In the explorative factor analysis with 230 entities, four factors of “feelings regarding advance care planning”, "justifications for advance care planning”, “justifications for not having advance care planning: fate and religion”, and “justifications for not having advance care planning: avoid thinking about death” were extracted. CFA with 160 elder patient showed that the four-factor model extracted from EFA has a good fit of the data (RMSEA: 0.04; NFI: 0.97 CFI: .99; IFI: .99; RFI: .96; AGFI: .87; GFI 0/90; standardized RMR: 0.02). To assess internal consistency Cronbach alpha coefficient for the questionnaire was confirmed within the range of 0.72-0.94, while stability with intra-cluster correlation coefficient was confirmed within the range of 0.85-0.96.
Conclusion: the results indicated that the Persian version of the advance care planning questionnaire has desirable psychometric properties for measuring the advanced care planning of the elderly. In addition, healthcare providers can employ this questionnaire in healthcare systems as well as research in Iran.
... 40 Patients from minoritized populations generally have lower AD completion rates. 41 Moreover, that AD documents are not culturally acceptable to certain minority populations, 42 including those that consider family and community to be the primary source of treatment decisions, further illustrates the complexity of antipsychotic use in dementia patients. 43 Conclusion Public policy, funding, and institutional choices may create unjust situations in which clinicians like Dr A are forced to pragmatically rebalance the risks of overmedicating with the potential harm of agitation and aggression in crowded, understaffed units. ...
This commentary on a case considers risks and benefits of pharmacological and nonpharmacological management of agitation in patients with dementia. Specifically, it considers beneficence and nonmaleficence in treatment decisions that affect both patients and staff as well as autonomy and surrogate decision making.
... Health professionals who enjoy trusting relationships with their patients and their caregivers still need to make sure they personally introduce the Workbook and thoroughly explain what it is and why they are giving it to the patient [22] When a trusting relationship does not exist, as is common in underserved and marginalized communities [23][24][25][26], it may be helpful to partner with community organizations such as faith communities who can introduce the Workbook to their congregants [27][28][29]. This approach needs to be paired with a parallel effort to familiarize clinicians and health systems with the Workbook, because even among our very prepared and confident participant sample, there were worries that their clinicians would not be receptive to their own efforts at ACP. Participants' responses to the ACP-e survey indicated the least readiness to talk to their doctors, however their lack of readiness could also reflect a concern that their doctors were not ready to talk to them. ...
Objectives
We evaluated the What Matters to Me Workbook, a patient-facing version of the Serious Illness Conversation Guide co-created by Ariadne Labs and The Conversation Project.
Methods
We purposively recruited diverse seriously ill patients and caregivers in the US. Participants completed the Workbook, a survey, and a semi-structured in-depth interview about their experience. Qualitative analysis of interviews and notes was employed to extract themes. Simple descriptive statistics were employed to analyze eight investigator authored questions.
Results
Twenty-nine study participants completed twenty-one interviews and twenty-five surveys. Ratings for safety (3.87/4, SD = 0.43) and acceptability (3.59/4, SD = 0.956) were higher than ratings for ease of use (3.30/4, SD = 0.97) and usefulness (3.24/4, SD = 0.80). Qualitative analysis identified that while the workbook was safe, acceptable, easy to use, and useful, it is more important who is recommending it and how they are explaining it.
Conclusion
If presented in the right way by a trustworthy person, the What Matters to Me Workbook can be an easy to use, useful, and safe resource for patients with serious illness and their caregivers.
Innovation
The Workbook focuses on serious illness rather than end-of-life and meshes with a clinician-facing conversation guide and a health-system level intervention.
... 'It is important to plan for the future') by indicating their levels of agreement on a five-point scale. 54 A higher score reflected a more positive attitudes (Cronbach's α = 0.82). ...
Background
Low awareness about palliative care among the global public and healthcare communities has been frequently cited as a persistent barrier to palliative care acceptance. Given that knowledge shapes attitudes and encourages receptiveness, it is critical to examine factors that influence the motivation to increase knowledge. Health information-seeking from individuals and media has been identified as a key factor, as the process of accessing and interpreting information to enhance knowledge has been shown to positively impact health behaviours.
Objective
Our study aimed to uncover public sentiments toward palliative care in Singapore. A conceptual framework was additionally developed to investigate the relationship between information-seeking preferences and knowledge, attitudes, receptiveness of palliative care, and comfort in death discussion.
Design and Methods
A nationwide survey was conducted in Singapore with 1226 respondents aged 21 years and above. The data were analysed through a series of hierarchical multiple regression to examine the hypothesised role of information-seeking sources as predictors.
Results
Our findings revealed that 53% of our participants were aware of palliative care and about 48% were receptive to receiving the care for themselves. It further showed that while information-seeking from individuals and media increases knowledge, attitudes and receptiveness to palliative care, the comfort level in death conversations was found to be positively associated only with individuals, especially healthcare professionals.
Conclusion
Our findings highlight the need for public health authorities to recognize people’s deep-seated beliefs and superstitions surrounding the concept of mortality. As Asians view death as a taboo topic that is to be avoided at all costs, it is necessary to adopt multipronged communication programs to address those fears. It is only when the larger communicative environment is driven by the media to encourage public discourse, and concurrently supported by timely interventions to trigger crucial conversations on end-of-life issues between individuals, their loved ones, and the healthcare team, can we advance awareness and benefits of palliative care among the public in Singapore.
... Introduced by Ajzen [13], this theory posits that individuals' behavioral intentions within a specific context are determined by attitude, subjective norms, and perceived behavioral control, driven by outcome expectations. However, when making decisions, individuals are affected by many factors, including society [14][15][16], cultures [17,18]and marketing [19,20], etc. Besides the above factors, environmental and psychological factors are also important factors influencing residents' choice of travel means [21][22][23]. ...
Choosing low-carbon transportation is an effective strategy for mitigating carbon emissions. This study utilized the Theory of Planned Behavior (TPB) framework to investigate the influences of proactive personality and perceived consumer effectiveness on low-carbon travel intention. By surveying urban residents, we examined the effects of subjective norm, behavioral attitude, perceived behavioral control, proactive personality, and perceived consumer effectiveness on low-carbon travel intention. The findings indicated that subjective norm, behavioral attitude, perceived behavioral control, proactive personality, and perceived consumer effectiveness have positive impacts on low-carbon travel intention. Notably, subjective norms have the greatest influence on behavioral intention, followed by proactive personality, while perceived consumer effectiveness has the least impact. Furthermore, this study identified attitude and perceived behavioral control as mediating factors between proactive personality, perceived consumer effectiveness, and low-carbon travel intentions. These findings reaffirmed the universal applicability of the TPB in individual decision-making contexts. The results also suggested that to promote low-carbon travel, it is crucial to not only focus on the social aspects of urban residents but also leverage the potential of individuals with a proactive personality.
... 25 In Black and Hispanic patients, end-of-life discussions resulted in more DNR orders being placed but didn't translate into less aggressive interventions during end-of-life care, raising question about the quality and impact of that counseling. 22,[24][25][26][27] Use of appetite stimulants among Black patients was higher compared to that of White patients. Retrospective studies in patients with pancreatic cancer have shown that cachexia disproportionately affects Black patients more than White, with no well-established explanation. ...
Background:
Referral to palliative medicine (PM) has been shown to improve quality of life, reduce hospitalizations, and improve survival. Limited data exist about PM utilization among racial minorities with gynecologic malignancies. Our objective was to assess differences in palliative medicine referrals and end of life interventions (within the last 30 days of life) by race and ethnicity in a diverse population of gynecologic oncology patients.
Methods:
A retrospective cohort study of patients receiving gynecologic oncologic care at a tertiary referral center between 2017 - 2019 was conducted. Patients had either metastatic disease at the time of diagnosis or recurrence. Demographic and clinical data were abstracted. Exploratory analyses were done using chi-square and rank sum tests. Tests were two-sided with significance set at P < .05.
Results:
A total of 186 patients were included. Of those, 82 (44.1%) were referred to palliative medicine. Underrepresented minorities accounted for 47.3% of patients. English was identified as the primary language for 69.9% of the patients and Spanish in 24.2%. Over 90% of patients had insurance coverage. Ovarian cancer (37.6%) and uterine cancer (32.8%) were the most common sites of origin. Most patients (75%) had advanced stage at the time of diagnosis. Race and language spoken were not associated with referral to PM. Black patients were more likely to have been prescribed appetite stimulants compared to White patients (41% vs 24%, P = .038). Black patients also had a higher number of emergency department visits compared to White patients during the study timeframe. Chemotherapy in the last 30 days of life was also more likely to be given to Black patients compared to White (P = .019).
Conclusions:
Race was associated with variation in interventions and healthcare utilization near end-of-life. Understanding the etiologies of these differences is crucial to inform interventions for care optimization as it relates specifically to the health of minority patients.
... 19 A US study among Black and White community-dwelling adults identified cultural values, beliefs, and communication patterns that could promote cultural competency among PCHPs. 6 Besides identification, research-based evidence has revealed the effectiveness of the existing practices, tools, and guidelines in the United States, in delivering culturally competent patient-centered EoLC to ethnic minorities by journals.sagepub.com/home/pcr 3 social workers. ...
Background
End-of-life care involves a multitude of functions delivered by a team of healthcare professionals. Family caregivers get involved in every aspect of the palliative care journey. Meeting the needs of ethnically diverse patients can be a daunting task for Western-trained healthcare professionals. Family and professional caregivers need to have a mutual understanding of perspectives and expectations to integrate family caregivers into end-of-life care. The South Asian population in Canada is fast growing, and very little is known about their understanding and expectations of end-of-life care.
Methods
The purpose is to provide research-based knowledge on discordances and concordances of encounters and perceptions of end-of-life care delivery between South Asian family caregivers and palliative care health professionals. Individual interviews were conducted among seven palliative care professionals, in a tertiary care center, and seven South Asian family caregivers who have provided care, in the same inpatient center, for the same period. The constant comparison, a component of the grounded theory approach, was employed to compare the two types of caregivers’ perspectives that emerged in the qualitative data.
Findings
The family caregivers were divided in their perception based on death denial and acceptance. The findings weaved the discordances and concordances of meaning assigned to palliative care to the three themes that emerged: the role of the family caregiver, communication needs and challenges, and barriers to the family caregiver participation in decision-making. The discordance between professionals and family caregivers arose in the death-denial group and concorded with the death-accepted group. The findings revealed a consequence of the survival optimistic bias, as creating dissatisfaction toward the end-of-life care delivery system when the palliative care professionals prognosticate imminent end-of-life.
Conclusion
The family caregivers’ interactions and encounters were shaped by their acceptance or denial of the death of their family member in care. Gaining conceptual clarity on the meaning of palliative care and providing education on the process of end-of-life care delivery are crucial to integrating ethnically diverse family caregivers into the decision-making process.
... 76 For example, one study demonstrated that Black community-dwelling residents are more likely to value collective decision-making, interdependence, and interconnectedness compared to White residents. 77 Moreover, the public"s awareness of ACP does not always translate into taking action to identify a healthcare proxy. 78 Several factors underlie the varied and often limited involvement in ACP by community dwelling individuals and include mistrust of the healthcare system, low health literacy, confidence that they are aware of their loved ones" wishes about future care, and an inability to engage due to other life stressors across the entire biopsychosocial spectrum. ...
Context
Advance care planning (ACP) intends to support person-centered medical decision-making by eliciting patient preferences. Research has not identified significant associations between ACP and goal-concordant end-of-life care, leading to justified scientific debate regarding ACP utility.
Objective
To delineate ACP's potential benefits and missed opportunities and identify an evidence-informed, clinically relevant path ahead for ACP in serious illness.
Methods
We conducted a narrative review merging the best available ACP empirical data, grey literature, and emergent scholarly discourse using a snowball search of PubMed, Medline, and Google Scholar (2000-2022). Findings were informed by our team's interprofessional clinical and research expertise in serious illness care.
Results
Early ACP practices were largely tied to mandated document completion, potentially failing to capture the holistic preferences of patients and surrogates. ACP models focused on serious illness communication rather than documentation show promising patient and clinician results. Ideally, ACP would lead to goal-concordant care even amid the unpredictability of serious illness trajectories. But ACP migh also provide a false sense of security that patients’ wishes will be honored and revisited at end-of-life. An iterative, ‘building block’ framework to integrate ACP throughout serious illness is provided alongside clinical practice, research, and policy recommendations.
Conclusions
We advocate a balanced approach to ACP, recognizing empirical deficits while acknowledging potential benefits and ethical imperatives (e.g., fostering clinician-patient trust and shared decision-making). We support prioritizing patient/surrogate-centered outcomes with more robust measures to account for interpersonal clinician-patient variables that likely inform ACP efficacy and may better evaluate information gleaned during serious illness encounters.
... This translates to a lack of culturally sensitive interventions within this population. Because Latino cultural norms [4,8] and attitudes [5] influence end-of-life care, exploring important topics during the end-of-life stage would help to provide personalized care. ...
There is a known end-of-life related disparity among Latino individuals, and there is a need to develop culturally sensitive interventions to help patients and caregivers cope with advanced cancer. Latino patients and caregivers coping with advanced cancer were asked to list important end-of-life topics to culturally inform a psychosocial intervention adaptation process. A qualitative study was conducted, and semi-structured interviews were performed, audio-recorded, and transcribed. Recordings and transcriptions were reviewed and analyzed using thematic content coding. The semi-structured interview described and demonstrated intervention components and elicited feedback about each. Free listing method was used to assess important topics among Latino advanced cancer patients (n = 14; stage III and IV) and caregivers. Patients and caregivers were given a list of 15 topics and asked which topics they deemed important to integrate into the intervention. Overall, more than half of the participants considered it important to include 13 of the 15 topics related to daily activities (eight subcategories), psychosocial support (three subcategories), discussing diagnosis and support (three subcategories), and financial difficulties (one subcategory). Patient-caregivers reported importance in most end-of-life topics. Future research and intervention development should include topics related to psychosocial support, daily activities, discussing diagnosis and support, and financial difficulties.
... Cultural idiosyncrasies must therefore be taken into consideration when devising end-of-life care plans, which should be influenced by cultural beliefs, values, and practices (Crawley et al. 2002). In other words, the cultural competency of end-of-life care professionals across the disciplines, including the chaplains, is key to quality care for the diverse patient population being served in a contemporary medical setting (Bullock 2011). ...
Despite the universality of death for humanity, end-of-life care needs and expectations are highly unique and influenced by the individual’s cultural conditioning, values, and beliefs. In the pursuit of quality end-of-life care provision within the increasingly complex and diverse contemporary medical context, it is vital for cultural idiosyncrasies to be taken into consideration in order to attend to the individual patient’s needs and end-of-life goals. Palliative chaplains, as the spiritual care specialists within the multidisciplinary healthcare team, play a crucial role in the support and facilitation of the holistic vision of end-of-life care delivery. However, the capacity of the chaplains to become culturally competent practitioners are often insufficiently addressed in their professional educational pathways, creating additional challenges for them in their practice. Using Hong Kong as a case study, this article examines the impact of cultural diversity on the effectiveness of the chaplains’ delivery of end-of-life spiritual care. Specifically, special attention will be focused on two identified challenges resulting from the lack of integration of local cultural understandings within the religion-cultural practice framework of chaplaincy formation: the cultural taboo of death, and the cultural idiosyncrasies in end-of-life communication. This article hopes to raise awareness of cultural incongruencies within the current chaplaincy professional formation and development, and to initiate further attention and efforts to support chaplains in becoming culturally competent practitioners in the pluralistic healthcare landscape.
... However, without qualitative data, we cannot explain how the intersection of racism, religion or spirituality, family dynamics, illness, and communication leads to this complex finding. Race and ethnicity-based disparities in pACP, at a minimum, depend on context, the racial and ethnic match of study personnel to participants, geography, and culture.[53][54][55][56] Data collected in an inclusive fashion and further research with an intention to address the relationship between race and ethnicity and pACP are needed.We believe this third trial of the FACE model continues to demonstrate the power of ACPconversations to maintain open communication between patients and their families. ...
Importance:
The effect of pediatric advance care planning (pACP) on the sustainability of end-of-life treatment preference congruence between adolescents with cancer and their families has not been examined.
Objective:
To evaluate the longitudinal efficacy of the Family-Centered Advance Care Planning for Teens with Cancer (FACE-TC) intervention to sustain adolescent-family congruence about end-of-life treatment preferences.
Design, setting, and participants:
This multisite, assessor-blinded, randomized clinical trial enrolled adolescents with cancer (aged 14-21 years) and their family members from 4 pediatric hospitals between July 16, 2016, and April 30, 2019. Participants were randomized 2:1 to FACE-TC (intervention group) or treatment as usual (control group) and underwent 5 follow-up visits over an 18-month postintervention period. Intention-to-treat analyses were conducted from March 9, 2021, to April 14, 2022.
Exposures:
Adolescent-family dyads randomized to the FACE-TC group received 3 weekly 60-minute sessions consisting of the discussion and/or completion of the Lyon Family-Centered Advance Care Planning Survey (session 1), Respecting Choices Next Steps pACP conversation (session 2), and Five Wishes advance directive (session 3). Dyads in the control group received treatment as usual. Both groups received pACP information.
Main outcomes and measures:
Congruence was measured by completion of the Statement of Treatment Preferences (a document that discusses 4 hypothetical clinical situations and treatment choices for each scenario: continue all treatments, stop all efforts to keep me alive, or unsure) after session 2 (time 1) and at 3 months (time 2), 6 months (time 3), 12 months (time 4), and 18 months (time 5) after intervention. The influence of FACE-TC on the trajectory of congruence over time was measured by longitudinal latent class analysis.
Results:
A total of 252 participants (126 adolescent-family dyads) were randomized. Adolescents (mean [SD] age, 17 [1.9] years) and family members (mean [SD] age, 46 [8.3] years) were predominantly female (72 [57%] and 104 [83%]) and White individuals (100 [79%] and 103 [82%]). There was an 83% (104 of 126) retention at the 18-month assessment. Two latent classes of congruence over time were identified: high-congruence latent class (69 of 116 [60%]) and low-congruence latent class (47 of 116 [41%]). The dyads in the FACE-TC group had a 3-fold odds of being in the high-congruence latent class (odds ratio [OR], 3.22; 95% CI, 1.09-9.57) compared with the control group. Statistically significant differences existed at 12 months (β [SE] = 1.17 [0.55]; P = .03]) but not at 18 months (OR, 2.08; 95% CI, 0.92-4.69). In the high-congruence latent class, good agreement (agreement on 2 or 3 of 4 situations) increased over 12 months. White adolescents and families had significantly greater odds of congruence than a small population of American Indian or Alaska Native, Asian, Black or African American, Hispanic or Latino, or multiracial adolescents and families (OR, 3.97; 95% CI, 1.07-14.69).
Conclusions and relevance:
Results of this trial showed that, for those who received the FACE-TC intervention, the families' knowledge of their adolescents' end-of-life treatment preferences was sustained for 1 year, suggesting yearly follow-up sessions. Race and ethnicity-based differences in the sustainability of this knowledge reflect a difference in the effect of the intervention and require further study.
Trial registration:
ClinicalTrials.gov Identifier: NCT02693665.
... Prior research pointed to several factors for the disparities: lower socioeconomic status, lack of ACP knowledge, mistrust in the healthcare system, and spiritual/religious beliefs not in line with ACP (Hong et al., 2018). Among Blacks/African Americans in particular, due to prior experience of discrimination in the healthcare system, they neither believed healthcare providers would respect their end-of-life wishes nor would ACP influence the quality of their end-of-life care (Bullock, 2011). Furthermore, their strong spirituality led them to believe in healing power and miracles and view that ACP and use of end-of-life care, such as hospice care, may "hasten death" (Bullock, 2011, p. 92). ...
Willingness for end-of-life discussion and related factors among rural Blacks/African Americans of the Alabama Black Belt have not been well-studied. This study aims to assess their willingness for the discussion and examine its relationship with social determinants of health (SDH) and demographic factors. A cross-sectional survey was conducted with a convenience sampling of 182 participants. Most participants were willing to discuss end-of-life wishes with family (77.1%) or doctors (72.1%). Controlling for demographics, results from binary logistic regressions showed those with hospice awareness were more likely to have willingness for discussion with family (OR = 10.07, p < .01) and doctors (OR = 7.23, p < .05). Those who were older (50+) were less likely to have willingness for discussion with doctors (OR = 0.19, p < .05), whereas those who were more socially isolated were less likely to have willingness for discussion with family (OR = 0.53, p < .05). Therefore, end-of-life discussion efforts should focus on older, socially isolated individuals and consider hospice awareness.
... A cross-national European study showed that factors associated with the discussion on end-of-life treatment plans and appointing a surrogate decision maker were country-specific (Evans et al., 2013). Understanding such preferences is important because cultural values and beliefs influence the decision-making on end-of-life care (Bullock, 2011). There is a paucity of research examining the preferences of older populations in different cultures with respect to end-of-life care. ...
Aims and Objectives
The aim of this study was to examine and compare decision-making preferences on end-of-life care for older people in Japan, the Hong Kong SAR and South Korea.
Background
Cultural values and beliefs influence decision-making on end-of-life care.
Design
A cross-sectional design was adopted.
Methods
Community-dwelling people aged ≥65 with additional requirements were recruited in 2016–2017 in the three regions. Their decision-making preferences on end-of-life care were assessed using Pang et al.'s questionnaire. These preferences and their sociodemographic and personal experience variables were compared and analysed using univariate and multiple logistic regressions. The STROBE checklist was followed.
Results
This study involved 415 participants. In all three regions, the most preferred decision maker and person with whom to discuss end-of-life care issues was a family member. Participants in the Hong Kong SAR were less likely to select a family member as their preferred decision maker than those in Japan (adjusted odds ratio = 0.129). Koreans were less likely to discuss end-of-life care issues with medical professionals than people in Japan (adjusted odds ratio = 0.278). More than 70% of the participants in each region indicated that they would not prefer to leave an advance directive to decide their end-of-life care.
Conclusion
Older Asians prefer to make their own decisions after consulting others. Family members play an important role in helping older people plan their preferred end-of-life care arrangements, even acting as decision makers when older people become incapable of deciding for themselves.
Relevance to clinical practice
Sufficient information should be provided to older people and their families for the older people to determine their preferred care. Helping families to understand and support the planned care and advance directives is a strategy for maximising family compliance with the care. Continuous efforts should be made to promote advance care planning and advance directives.
... collectivism valued by African Americans [56]. Therefore, significant efforts must be made to gain insight into African American family members' cultural values and serious illness preferences. ...
Purpose of Review
The purpose of this review is to examine racism in healthcare as it relates to older African American adults. We focus on health disparities in old age and medical mismanagement throughout their lifespan.
Recent Findings
In the United States there have been extensive medical advances over the past several decades. Individuals are living longer, and illnesses that were deemed terminal in the past are now considered chronic illnesses. While most individuals living with chronic illness have experienced better quality of life, this is not the case for many African American older adults.
Summary
Older African American adults are less likely to have their chronic illness sufficiently managed and are more likely to die from chronic illnesses that are well controlled in Whites. African American older adults also continue to suffer from poorer healthcare outcomes throughout the lifespan to end-of-life.
... The ACP process involves medical decision-making and end-of-life discussions between the health provider and the individual. However, this process conflicts with the tradition of family involvement in medical decision-making among Asians, leading to difficulties in the uptake of ACP [2,3]. Moreover, in traditional Chinese culture, a conversation about a person's own death and dying would not be initiated until the person faced a terminal illness. ...
Background:
Understanding attitudes towards life and death issues in different cultures is critical in end-of-life care and the uptake of advance care planning (ACP) in different countries. However, existing research suffers from a lack of cross-cultural comparisons among countries. By conducting this comparative study, we hope to achieve a clear understanding of the linkages and differences among healthcare cultures in different Chinese societies, which may serve as a reference for promoting ACP by considering cultural differences.
Methods:
Our researchers recruited Chinese adults who could communicate in Mandarin and lived in metropolitan areas in Taiwan, Hong Kong, Singapore, and Australia. Focus group interviews were conducted, and the interview contents were recorded and subjected to thematic analysis.
Results:
Between June and July 2017, 14 focus groups with 111 participants were conducted in four regions. With traditional Chinese attitudes towards death as a taboo, many participants felt it would be challenging to discuss ACP with elderly family members. Most participants also desire to avoid suffering for the self and family members. Although the four regions' participants shared a similar Chinese cultural context, significant regional differences were found in the occasions at which participants would engage in end-of-life discussions and select settings for end-of-life care. By contrast, participants from Singapore and Australia exhibited more open attitudes. Most participants from Taiwan and Hong Kong showed a preference for end-of-life care at a hospital.
Conclusions:
The developmental experiences of ACP in Western countries, which place a strong emphasis on individual autonomy, cannot be directly applied to family-centric Asian ones. Healthcare professionals in Asian societies should make continuous efforts to communicate patient status to patients and their family members to ensure family involvement in decision-making processes.
... Substitute decision-maker will need to be available and contactable, aged 18 years or older, and prepared to clearly and confidently advocated on behalf of the person when talking to clinicians. Regardless of the cultural background, most people prefer to choose the surrogate decision-maker among family members [31,32]. Identifying a substitute decisionmaker offers some advantages for the person and next of kin, including better end-of-life care and more satisfaction (of the person and his/her family) about the received care [8]. ...
Advance care planning (ACP) is a process that guarantees the respect of the patient’s values and priorities about his/her future care at the end of life. It consists of multiple conversations with the health professional that may lead to the completion of Advance Directives (AD), a set of legal documents helpful to clinicians and family members for making critical decisions on behalf of the patient, whereas he/she might become incapable. Over the past years, ACP has become particularly relevant for the growth of chronic diseases, the increase in life expectancy, and the growing attention paid to the patient’s decisional autonomy. Several nations have introduced specific regulations of ACP and AD. However, their diffusion is accompanied by unforeseen limitations and issues, burdening their complete and systematic adoption. The present article describes several controversial aspects of ACP and some of the most significant challenges in end-of-life care.
... In past studies, Latinx individuals were the least likely to participate in ACP (Eleazer et al., 1996), but recent works suggests they are open to end-of life discussions when offered the opportunity to discuss them in their preferred language with individualized, culturally competent materials (Maldonado et al., 2019). One key difference in the way communities of color and non-Hispanic whites approach aging-related preparation is that these communities are more likely to engage in family-centered collective processes in which opinions from family members about moving, care plans, and end of life are valued as much or even more than the elder's own preferences, and interdependence is valued more than autonomy and independence (Bullock, 2011). ...
When older adults face age-related life challenges, anticipating what to expect and how to access potential coping strategies can both prevent and provide the possibility of easier recovery from crises. Aging-Related Preparation (ARP) is defined as the contin-uum of thoughts and activities about how to age well, often begin-ning with the awareness of age-related changes, or the anticipation of retirement, and concluding with specifying end-of-life wishes. In the current paper, we introduce the concept of ARP and related formulations regarding plans for aging well, describe both predic-tors and outcomes of ARP for several the domains of ARP, and consider the elements of ARP within the context of existing social policy. We conclude that ARP is determined by a variety of influ-ences both intrinsic to the older person (e.g., personality, cognitive ability, beliefs about planning, problem-solving skills), linked to so-cial class and education, as well as dependent on family structures, access to and knowledge of options, services, and local community resources, and social policy. We further provide evidence that ARP has positive effects in the domain of pre-retirement planning (for retirement adjustment), of preparation for future care (for emo-tional well-being), and of ACP (for a good death). However, other domains of ARP, including planning for leisure, housing, and so-cial planning are under-researched. Finally, we discuss policy im-plications of the existing research.
Keywords: Age-related preparation, Retirement planning, Preparation for future care, Proactive Coping, Long-term care; doi: 10.18278/jep.1.2.7
... Tal relação pode ser reflexo das influências culturais. Quando se trata de tomar decisões médicas, idosos afro-americanos e hispânicos tendem a desviar a sua decisão para os membros da família, ou focar primeiro na família, em vez de realizar as suas próprias escolhas 33 . Essas atitudes resultam em menor autonomia ativa por parte dos idosos não-brancos. ...
Resumo O objetivo deste artigo é identificar os fatores associados à autonomia pessoal em idosos. Revisão sistemática de estudos epidemiológicos analíticos, selecionados nas bases PubMed, Web of Science, Scopus e LILACS, sem restrição de tempo e idioma. A busca de artigos resultou em 3.435 estudos. A seleção foi realizada em duas fases: leitura de resumos e leitura de artigos completos, seguindo critérios de inclusão e exclusão, por dois revisores independentes, resultando em sete estudos incluídos. O risco de viés foi avaliado pelo protocolo Newcastle-Ottawa Scale. Todos os estudos incluídos foram de desenho seccional e analisaram a autonomia sobre a perspectiva de percepção da promulgação da autonomia. Os instrumentos mais utilizados foram Hertz Perceived Enactment of Autonomy Scale e Chinese version of Perceived Enactment of Autonomy Scale. Os fatores associados à autonomia dos idosos identificados foram agrupados em: funcionalidade, relações familiares, relações interpessoais, percepção sobre a vida, satisfação com serviços de saúde, fatores demográficos, escolaridade, estado geral de saúde e qualidade de vida. O estudo da autonomia pessoal do idoso apresentou caráter multifatorial e biopsicossocial, porém é uma temática recente, sendo necessário novas pesquisas com mais alta evidência científica.
... In this study, all the participants were adult declarants who participated in ACP on their own volition. Other studies have revealed the factors influencing the declarants' signing of ADs, which include their age, race, whether the declarant was suffering from a disease, socioeconomic status, education level, level of disability, and whether the declarant has knowledge about ADs and end-of-life care [27][28][29][30][31][32]. ...
(1) Background: Since Taiwan’s Patient Right to Autonomy Act took effect in 2019, up to ten thousand declarants have participated in advance care planning (ACP) and have signed advance directives (ADs). Relative to the entire population of Taiwan, only a small percentage have completed ACP. This study sought to understand the motivations of Taiwanese who have participated in ACP, so as to increase the percentage of individuals participating in ACP and signing ADs; (2) Objectives: To understand the motivations that drive Taiwanese individuals to participate in ACP discussions.; (3) Methods: A retrospective secondary data analysis was performed in this study. The participants consisted of declarants who completed their ACP at a medical center in Taiwan in 2019; (4) Results: During the study period, 946 individuals completed their ACP. Of those declarants, 66.7% were over 60 years of age; 66.5% completed the process in groups of three or more; 49.5% completed their ACP free of charge; and 35 declarants had designated a health care agent (HCA). The declarants’ four main motivations for participating in ACP were “looking forward to dying with dignity,” “making end-of-life preparations,” “fear of being a social and economic burden on family members,” and “reluctance to let family members take on the responsibility of making decisions.” Furthermore, statistically significant differences were observed between the declarants in terms of gender, age, designation of an HCA, and motivations for participating in ACP. Females, declarants aged below 60 years, and declarants with a designated HCA tended to participate in ACP due to “reluctance to let family members to take on the responsibility of making decisions”. Males, declarants aged above 60 years, and declarants without an HCA came for ACP because of “fear of being a social and economic burden on family members”. (5) Conclusions: The main motivations of Taiwanese individuals who sought ACP were to die with dignity and to have an early understanding of end-of-life treatment and care models. Secondly, these individuals hoped that their families would not have to take on the responsibility of making decisions. They also did not want to impact their families socially and economically. In this regard, providing economic subsidies might enhance the Taiwanese public’s intentions to seek ACP discussions on their own initiative.
Context: Non-disclosure practices hold significant weight in end-of-life care for Muslim communities, where cultural and religious beliefs are deeply intertwined with healthcare decision-making. This narrative review explores the complexities of medical decision-making and disclosure practices among terminally ill Muslim patients, examining how these factors shape palliative care delivery. Objectives: The primary objective of this review is to investigate the impact of non-disclosure practices on end-of-life care in Muslim populations, focusing on key themes that influence medical decision-making. Additionally, the review identifies ways in which Healthcare Provider (HCP) can navigate these culturally sensitive issues to enhance care. Methods: A comprehensive narrative review was conducted, utilizing articles from CINHAL, PsychINFO, Scopus, and PubMed databases published between 2009 and 2024. An initial search yielded 2025 articles. After applying inclusion and exclusion criteria, 12 studies were included for analysis. The SANRA guidelines for narrative reviews were followed, and the SPIDER framework was used for qualitative synthesis. Results: Of the 2041 articles initially retrieved, 2014 were excluded after screening, 8 were duplicates, and 7 full texts were excluded for not meeting the inclusion criteria. The final review included 12 studies. Three key themes emerged: (1) cultural, religious, and emotional factors driving requests for non-disclosure, (2) the prominent role of family in medical decision-making, and (3) healthcare provider communication challenges contributing to disparities in palliative care access. Conclusion: Non-disclosure practices present significant barriers to effective palliative care in Muslim communities. To improve care outcomes, culturally competent communication strategies and family-centered decision-making models are crucial.
Context
For many, the perception of “hospice” is synonymous with “death.” Even clinicians struggle to have conversations that distinguish between hospice and palliative care for fear that discussing hospice may diminish hope. To date, there are no existing measurement tools to evaluate patient and family perceptions of hospice care.
Objective
This research aimed to develop a Hospice Perceptions Instrument (HPI) to capture these perceptions among diverse patients and families.
Methods
Building on previous studies and literature, 79 potential items were drafted for the instrument. Our interprofessional team independently and collectively evaluated these, resulting in 36 items rated on a 5-point Likert scale. Overarching domains include (1) hospice philosophy and definitions; (2) hospice services; (3) values; and (4) counter-perceptions. Sixteen national subject matter experts from various professions and roles were invited to participate in the content-validity index and five hospice caregivers were invited to participate in face validity.
Results
Fourteen experts responded, with ten meeting inclusion criteria: one physician, four nurses, three social workers, and two chaplains. Six of the ten identified as Black. Three items were removed (I-CVI ranged from 0.5-06), and nine items were revised (I-CVI ranged from 0.6-07). The overall Content Validity Index (CVI) was 0.83, indicating excellent content validity. After revisions, five hospice caregivers assessed face validity and no changes were made based on feedback.
Conclusion
Results reveal a disconnect between professional expertise and patient/family voices related to hospice perceptions. Development of this instrument invites a better understanding of perceptions leading to new opportunities for patient/family engagement.
Context
Healthcare consumers are encouraged to develop an Advance Care Plan (ACP) to help to ensure their preferences are known and respected. However, the role of governing systems in the application of ACPs must be understood if patients’ voices (expressed within this medium) are to be heard.
Objective
To explore systemic barriers influencing Queensland public hospital doctors’ application of the Advance Care Plans of hospitalized people with a neurodegenerative disorder.
Methods
Using a constructivist grounded theory approach, 16 semi structured interviews were conducted with public hospital doctors. Data were inductively analysed using open and focused coding.
Results
Analysis revealed two main themes: Practicing Medicine within a Legal Construct, and Delegitimizing ACP. Participants found the application of ACP in Queensland unduly complex, and they were inadequately prepared by education or training. Doctors maintained a dominant role in temporal medical decision-making and cited hospital practice culture for delegitimizing patient-owned ACPs.
Conclusion
The public healthcare system in Queensland exerts considerable influence over the degree to which ACPs influence decision-making. Despite the premise that ACPs give patients a powerful voice, hospital doctors often do not understand the underpinning law on which they depend when citing their responsibility for good medical practice. Systemic influences have contributed to a practice culture that has delegitimized the patient’s voice when expressed through an ACP.
Background and Objective
Current studies of end-of-life care in Parkinson disease (PD) do not focus on diverse patient samples or provide national views of end-of-life resource utilization. We determined sociodemographic and geographic differences in end-of-life inpatient care intensity among persons with PD in the United States (US).
Methods
This retrospective cohort study included Medicare Part A and Part B beneficiaries 65 years and older with a qualifying PD diagnosis who died between January 1, 2017, and December 31, 2017. Medicare Advantage beneficiaries and those with atypical or secondary parkinsonism were excluded. Primary outcomes included rates of hospitalization, intensive care unit (ICU) admission, in-hospital death, and hospice discharge in the last 6 months of life. Descriptive analyses and multivariable logistic regression models compared differences in end-of-life resource utilization and treatment intensity. Adjusted models included demographic and geographic variables, Charlson Comorbidity Index score, and Social Deprivation Index score. The national distribution of primary outcomes was mapped and compared by hospital referral region using Moran I.
Results
Of 400,791 Medicare beneficiaries with PD in 2017, 53,279 (13.3%) died. Of decedents, 33,107 (62.1%) were hospitalized in the last 6 months of life. In covariate-adjusted regression models using White male decedents as the reference category, odds of hospitalization was greater for Asian (AOR 1.38; CI 1.11–1.71) and Black (AOR 1.23; CI 1.08–1.39) male decedents and lower for White female decedents (AOR 0.80; CI 0.76–0.83). ICU admissions were less likely in female decedents and more likely in Asian, Black, and Hispanic decedents. Odds of in-hospital death was greater among Asian (AOR 2.49, CI 2.10–2.96), Black (AOR 1.11, CI 1.00–1.24), Hispanic (AOR 1.59; CI 1.33–1.91), and Native American (AOR 1.49; CI 1.05–2.10) decedents. Asian and Hispanic male decedents were less likely to be discharged to hospice. In geographical analyses, rural-dwelling decedents had lower odds of ICU admission (AOR 0.77; CI 0.73–0.81) and hospice discharge (AOR 0.69; CI 0.65–0.73) than urban-dwelling decedents. Nonrandom clusters of primary outcomes were observed across the US, with highest rates of hospitalization in the South and Midwest (Moran I = 0.134; p < 0.001).
Discussion
Most persons with PD in the US are hospitalized in the last 6 months of life, and treatment intensity varies by sex, race, ethnicity, and geographic location. These group differences emphasize the importance of exploring end-of-life care preferences, service availability, and care quality among diverse populations with PD and may inform new approaches to advance care planning.
Objective:
To explore advance care planning (ACP)-related knowledge, experience, views, facilitators and barriers among older Moroccan adults in Belgium.
Method:
General practitioners (GPs) recruited participants for semi-structured interviews. Data were analysed using the constant comparative method.
Results:
The 25 interviewees (average age, 74 years) lacked ACP knowledge and had not discussed it with healthcare professionals. After a brief explanation, most interviewees did not find ACP useful. After more explanation with a specific example, they had fewer religious objections and were more willing to have discussions with their GPs and/or relatives. ACP barriers were a lack of knowledge, current good health, potential harm of talking about death, trust in one's children to make care decisions and fear of worrying one's children. Facilitators were GPs' information provision, children's involvement in ACP discussions and the desire to not depend on children.
Conclusion:
Many older Moroccan adults lacked familiarity, but were willing to discuss ACP after receiving understandable concrete information. GPs should facilitate ACP discussions for these patients, ideally with adult children involved, with consideration of barriers, individual preferences and generally low educational levels.
Practice implications:
GPs should provide comprehensible ACP information with case examples and consider potential barriers and facilitators in this group.
Background and Aim
End-of-Life (EOL) decision-making in paediatric critical care can be complex and heterogeneous, reflecting national culture and law as well as the relative resources provided for healthcare. This study aimed to identify similarities and differences in the experiences and attitudes of European paediatric intensive care doctors, nurses and allied health professionals about end-of-life decision-making and care.
Methods
This was a cross-sectional observational study in which we distributed an electronic survey to the European Society of Paediatric and Neonatal Intensive Care (ESPNIC) members by email and social media. The survey had three sections: (i) 16 items about attitudes to EOL care, (ii) 14 items about EOL decisions, and (iii) 18 items about EOL care in practice. We used a 5-point Likert scale and performed descriptive statistical analysis.
Results
Overall, 198 questionnaires were completed by physicians (62%), nurses (34%) and allied health professionals (4%). Nurses reported less active involvement in decision-making processes than doctors (64% vs. 95%; p < 0.001). As viewed by the child and family, the child's expected future quality of life was recognised as one of the most critical considerations in EOL decision-making. Sub-analysis of Northern, Central and Southern European regions revealed differences in the optimal timing of EOL decisions. Most respondents ( n = 179; 90%) supported discussing organ donation with parents during EOL planning. In the sub-region analysis, differences were observed in the provision of deep sedation and nutritional support during EOL care.
Conclusions
This study has shown similar attitudes and experiences of EOL care among paediatric critical care professionals within European regions, but differences persist between European regions. Nurses are less involved in EOL decision-making than physicians. Further research should identify the key cultural, religious, legal and resource differences underlying these discrepancies. We recommend multi-professional ethics education to improve EOL care in European Paediatric Intensive Care.
The Second Edition of the Oxford Textbook of Palliative Social Work is a compendium of contextualized information relevant to the field of palliative care, which coheres the collective wisdom of more than 150 authors, reflecting expertise, evidence, and passion. Infused with patient and family narratives, learning exercises and resources, the T ext is organized around settings of care, medical diagnoses, specific populations, ethical considerations, and interventions. Chapters capture the rich palliative social work history and core components of collaborative practice, including social justice, health equity, culture, language, and spirituality. International palliative social work practice is reflected by regional voices and highlighted by an exploration of the unique response to the COVID-19 pandemic as it evolved in their respective countries. Professional issues include mentoring, supervision, advocacy, policy, education, leadership, certification, legacy, and resilience.
Culture constitutes the lens through which we see ourselves, others, and the world around us. The diversification of the American population has prompted increased attention to the role of culture in healthcare systems. Medical advances increasing life expectancy have led to Americans living longer with serious illness, thereby accentuating the need to foreground culture in palliative care. On a structural level, such efforts have been reflected in initiatives emphasizing the delivery of person-centered and culturally effective care. Social workers are uniquely positioned to lead these efforts and integrate cultural considerations into health social work. This chapter provides an analysis of the impact of culture in palliative social work. Transcultural social work andragogy, clinical presentations of culture, and tools for cultural assessment are presented. Patient narratives illustrate how these issues may manifest in real-world contexts. This chapter concludes with resources for expanding our understanding of culture in palliative care.
Outpatient palliative care programs provide necessary and sustained linkage between care settings by building a partnership with patients and families throughout the disease trajectory. With transdisciplinary collaboration, outpatient palliative care teams intervene preemptively to anticipate, prevent, and treat distress for those with serious illness. Palliative social workers hold a necessary role on the outpatient palliative care team and are a bridge between the medical providers and patient to address psychosocial, emotional, and relational needs. Outpatient palliative care programs are diverse in structure but hold opportunities for further improvement in standardization of care, consistent service delivery, and accessing secure funding resources. Society is faced with an aging population and national healthcare crises, including socioeconomic pressures, pervasive healthcare disparities among cultural groups, global pandemics such as COVID-19, and evolving medical technology and pharmacology. As patients with serious illness learn to navigate their healthcare and are asked to make complex healthcare decisions, palliative social workers are needed more than ever to represent and facilitate personalized and systemic change in outpatient palliative care.
This chapter explores theoretical frameworks to both complicate and clarify lived experience of patients, families, teams, and self through systems of power as well as tools for reflection to catalyze self-awareness. The intent is to understand the impact of the pervasive sociopolitical systems of oppression, namely imperialism, patriarchy, and white supremacy, to inform an anti-oppression social work lens. Through deepening awareness and critical self-reflection, social workers are invited to apply these lenses to their learning, practice, and place within palliative care, healthcare systems, and our larger, interconnected society.
While the importance of advance care planning (ACP) and the role that hospitalists play is clear, there are numerous barriers that prevent better, earlier, and more frequent ACP. Many hospitalists find ACP and goals of care conversations uncomfortable. Some physicians feel that broaching the ACP conversation constitutes giving up hope for the patient. This is often reinforced by family members. Hospitalists have noted that the lack of long-standing relationship with hospitalized patients makes ACP conversations difficult to broach. The demands of hospital throughput often make establishing a mutually respectful relationship challenging. Families and patients who are not ready to talk about death and end-of-life care can make ACP feel even more uncomfortable and difficult. In this chapter case studies are reviewed to determine barriers to ACP.KeywordsAdvance care planningHospiceAdvance directivesCultural competencyPalliative care
The focus of this pilot study was to ascertain how bereaved African American caregivers prepared for the death of an older family member who died from a dementia-related diagnosis and the role of hospice care; an area with little research to date. Because African American older adults in the United States are at greater risk than Caucasian older adults for dementia-related health problems though less likely to be diagnosed, treated, or to enroll in hospice services, this exploratory study asked questions of the family caregivers' experiences in preparing for the death. Purposive criterion sampling was used to identify six African American bereaved caregivers whose family member lived in a nursing home (five who were enrolled in hospice services) who were extensively interviewed, with the use of conventional content analysis of the transcripts to identify the findings. Because of the limited sample size, themes identified were considered preliminary and may help guide ongoing and further research. Five primary themes revealed ways caregivers prepared: accepting reality; "I just kind of knew;" person with dementia "was ready;" "spending time;" and, getting your "business in order." All caregivers believed it was important to be prepared for the death, with the five who received hospice services reporting that they were prepared. Further research is needed to explore these preliminary findings of African American caregivers of family members with dementia at end-of-life to further inform social work and hospice team care.
Background: Family members often take the place of decision-making for elderly individuals. Previous studies showed that family members could not predict elderly individuals’ thoughts about end-of-life care. Objectives: The aims are to understand the differences and perspectives between elderly individuals and surrogates regarding end-of-life care. Design: A mixed methods study comprising a cross-sectional survey and field notes analysis. Setting: Two geriatric wards in a veterans hospital located in northern Taiwan. Subjects: Fifty-five pairs of elderly individuals and their surrogates. Measurements: Life support preferences questionnaire and field notes. Results: The quantitative data showed that the elderly individuals and their surrogates had proper consistency in cardiopulmonary resuscitation and surgery. However, their consistency was poor in antibiotics and nasogastric tube feeding. Four themes were identified in qualitative data: recognizing old age, struggling with hope and peace, worries and concerns, and control of life. Recognizing old age for both elderly individuals and their surrogates was critical. Elderly individuals and their surrogates may seek a ray of hope among aggressive treatments and struggle with hope and peace. A lot of worries and concerns were mentioned, including contextual concerns. Elderly individuals need to depend on their ability to control their life. Conclusions: The study highlights elderly individuals’ and their surrogates’ considerations for antibiotics and nasogastric tube feeding. Furthermore, elderly individuals expressed that it is different for making decisions for themselves or others; thus, future studies can further explore whether elderly individuals allow their surrogates leeway from their wishes.
Introduction
People diagnosed with neurodegenerative disorders often grapple with threats to their agency, prompting some to engage in advance care planning. Advance care plans are intended to protect autonomy by helping patients receive goal-consistent healthcare. Accordingly, there is a need to better understand factors associated with hospital doctors’ application of advance care plans to treatment decisions of this patient cohort.
Purpose
The purpose of this study was to explain the recommendations of multidisciplinary hospital-based clinicians about the benefits of advance care plans for people diagnosed with neurodegenerative disorders, and the elements that influence how doctors apply such plans.
Materials and Methods
Using a constructivist grounded theory informed thematic analysis, semi-structured interviews were conducted with purposively and theoretical sampled hospital-based clinicians: 16 doctors, six registered nurses and 10 allied health clinicians who self-reported having experience delivering healthcare to people with neurodegenerative disorders and an advance care plan. Allied health and nurse data helped to inform questions posed to doctors. Data were inductively analysed using open and focused coding.
Results
Analysis revealed two main themes: recommending agency through advance care plans; and limiting agency through advance care plans. These themes formed the basis of the core category: patient agency. All clinicians held positive attitudes towards advance care plans as a means to preserve patient voices and alleviate family of responsibility. However, the extent to which doctors shared decisions with family revealed a tension between individualistic agency associated with advance care plans and relational autonomy perceived by doctors as appropriate.
Conclusion
Although doctors expressed positive attitudes towards advance care plans, they typically practiced relational autonomy wherein they partner with family in contemporaneous healthcare decision on patients’ behalf. Accordingly, the healthcare preferences of hospitalised, incompetent people with neurodegenerative disorders are balanced against judgements of both doctors and family.
Background: Anxiety, depression, and reduced quality of life (QOL) are common problems for hospice family caregivers, but it is unknown if disparities in these experiences exist among Black and White caregivers. Objectives: To compare anxiety, depression, QOL, caregiver burden, and perceptions of caregiver-centered hospice team communication between Black and White hospice family caregivers. Design: Secondary analysis of baseline data from two randomized clinical trials. Setting/Subjects: Seven hundred twenty-two Black and White hospice family caregivers ages 18+ from Midwestern and Northeastern United States. Measurements: Measures included the Generalized Anxiety Disorder-7 (GAD-7), Patient Health Questionnaire (PHQ-9), Caregiver Quality-of-Life Index-Revised (CQLI-R), Zarit Burden Interview (ZBI-7), and Caregiver-Centered Communication Questionnaire (CCCQ). Results: Black and White caregivers differed across demographic and socioeconomic variables. Nearly one-third of hospice family caregivers reported moderate-to-severe anxiety (32.1%) and moderate-to-severe depressive symptoms (32.0%). White caregivers reported lower QOL than Black caregivers (p = 0.04), specifically in emotional (p = 0.02) and social (p = 0.0005) domains. In multiple regression analyses controlling for caregiver and patient factors, we found no racial differences in depression, anxiety, QOL, caregiver burden, or perceptions of caregiver-centered hospice communication. Conclusions: Despite demographic and socioeconomic differences, Black and White hospice family caregivers experience similarly high levels of anxiety, depression, burden, and perceptions of hospice communication. Interventions to support hospice family caregivers across racial groups and research that identifies factors that mediate social determinants of health in this population are needed. The development and validation of culture-concordant mental health screening tools in racially diverse populations is recommended. Trial registration: ClinicalTrials.gov NCT02929108 and ClinicalTrials.gov NCT01444027.
The COVID-19 Pandemic has emphasized the importance of attending to racial inequity in end-of-life care, as the world has witnessed the disproportionate negative impact on Black and Brown people and communities. Advance care planning (ACP) is of particular concern for this population. This article introduces an ACP toolkit developed as a culturally responsive educational approach to assist African-American faith leaders to inform and educate congregants on end-of-life care options and the process to complete advance care documents. The purpose of this article is to describe the development of The Let’s Talk about ACP toolkit and to discuss the results of the pilot study workshop. The procedures of the pilot study included a critical evaluation of an innovative curriculum and workshop process for engaging African Americans around advocacy for the healthcare experience they prefer. Factors such as cultural, generational, and spiritual beliefs and values influenced decision-making. Distrust was one of the most prominent factors raised by participants. Providing resources and tools that encompass culturally responsive approaches to educate and encourage use can help bridge the gap. The next steps for this innovative practice approach is to refine the practice approach and replicate the finding among larger community settings.
This study examined cultural differences in advance care planning (ACP) and various strategies that social workers use to initiate conversations on ACP. We conducted qualitative interviews with 12 social workers in South Korea and the US and a thematic content analysis of the transcribed data. Our findings show that different cultural norms and generational viewpoints surrounding death and health-related decision-making influence how people prepare for end-of-life care (EOLC). Whereas principles of self-determination and autonomy guide ACP practices in the US, decisions regarding EOLC are more often made in consultation with family members in Korean and Korean-American communities. Nevertheless, social workers in both countries identified relationship-building, empowerment, and individualized approaches as common strategies in initiating discussions on ACP.
An educational program was developed to train practitioners to provide care for patients and families that are responsive to cultural concerns. The aim was to increase knowledge and improve attitudes toward providing culturally proficient and culturally sensitive care for patients and families facing life-threatening illnesses. The program consisted of six half-day sessions on key areas in end-of-life care practice. The modules integrated and infused content related to ethnically and culturally diverse populations in a comprehensive training format. Evaluation results suggested that the program was successful in increasing participant knowledge and attitudes towards cross-cultural interdisciplinary practice of end-of-life care.
Being a family carer to a patient nearing the end of their life is a challenging and confronting experience. Studies show that caregiving can have negative consequences on the health of family carers including fatigue, sleep problems, depression, anxiety and burnout. One of the goals of palliative care is to provide psychosocial support to patients and families facing terminal illness. A systematic review of interventions for family carers of cancer and palliative care patients conducted at the start of this millennium demonstrated that there was a dearth of rigorous inquiry on this topic and consequently limited knowledge regarding the types of interventions likely to be effective in meeting the complex needs of family carers. We wanted to discern whether or not the evidence base to support family carers has improved. Furthermore, undertaking this review was acknowledged as one of the priorities for the International Palliative Care Family Carer Research Collaboration http://www.centreforpallcare.org.
A systematic review was undertaken in order to identify developments in family carer support that have occurred over the last decade. The focus of the review was on interventions that targeted improvements in the psychosocial support of family carers of palliative care patients. Studies were graded to assess their quality.
A total of fourteen studies met the inclusion criteria. The focus of interventions included psycho-education, psychosocial support, carer coping, symptom management, sleep promotion and family meetings. Five studies were randomised controlled trials, three of which met the criteria for the highest quality evidence. There were two prospective studies, five pre-test/post-test projects and two qualitative studies.
The systematic review identified a slight increase in the quality and quantity of psychosocial interventions conducted for family carers in the last decade. More rigorous intervention research is required in order to meet the supportive care needs of family carers of palliative care patients.
This study examined the challenges faced by family members at the end of life in different care settings and how those challenges compare across settings. A total of 30 participants, who had a family member die in inpatient hospice, a skilled nursing facility or a community support program were interviewed. Semi-structured interviews were recorded and transcribed. Text was coded using qualitative thematic analysis. Themes were determined by consensus. Twelve challenges were identified across care sites. Two themes emerged in all three settings: bearing witness and the experience of loss. The study findings contribute to our knowledge of family perceptions of care in different settings and raises awareness of the need for further research describing the experiences at the end of life in different settings and the importance of creating and testing interventions for both setting specific needs and universal issues.
Latinos account for 15% of the US population, a proportion projected to grow to 30% by the year 2050. Although there is tremendous diversity within this community, commonalities of language, beliefs, attitudes, and behaviors unite Latinos, making them more similar than different. Differences by national origin, although important, are attenuated when immigrants come to the United States, dominated by an English-language, Anglo-centric culture. For non-Latino and non-Spanish-speaking clinicians, communication barriers and cultural misunderstandings can impede the care of dying Latino patients and their families. We present the case of a young, pregnant, Spanish-speaking woman from Central America diagnosed with a fatal leukemia. As illustrated by this case, Latino immigrants face a number of external challenges to optimal end-of-life care: (1) geographic distance as well as political and economic realities often separate patients from their valued families; (2) undocumented immigrants are frequently uninsured and fear of deportation may create a barrier to accessing health services; (3) language and literacy barriers; and (4) concerns about discrimination. Other Latino issues that may be more pronounced in end-of-life settings include cultural themes and religious and spiritual influences. We recommend that professional interpreters must be used for discussions about goals of care with Spanish-speaking patients and families or when negotiating conflict between the patient, family, and the health care team. Concrete suggestions are provided for clinicians in working with interpreters, eliciting culturally based attitudes and beliefs, and implementing universal strategies for clear health communication.
This project explored end-of-life care preferences and barriers among low-income, urban African Americans and Latino/Hispanic Americans (Latinos) to uncover factors that may influence hospice utilization.
Focus groups were conducted separately for African Americans (4 groups, n = 26) and Latinos (4 groups, n = 27). Transcripts were coded and analyzed using consensus and triangulation to identify primary themes.
Four preference themes and four barriers were identified. Results were largely similar across the two groups. Both preferred having families provide care for loved ones but expressed desire to reduce caretaker burden. Groups emphasized spirituality as the primary means of coping and valued the holistic well-being of the patient and family. Barriers reported were closely tied to access to care. Participants reported low hospice utilization because of lack of awareness of hospice and the prohibitive cost of health care. Latinos were more likely to report language barriers, while African Americans were more likely to report mistrust of the system.
African Americans and Latinos in this study were highly receptive to end-of-life care that would provide relief for patients and caregivers and emphasize spirituality and family consensus. Improving awareness of hospice services would likely increase utilization.
Little guidance is available for health care providers who try to communicate with patients and their families in a culturally sensitive way about end-of-life care.
To explore the content and structure of end-of-life discussions that would optimize decision making by conducting focus groups with two diverse groups of patients that vary in ethnicity and socioeconomic status.
Six focus groups were conducted; 3 included non-Hispanic white patients recruited from a University hospital (non-Hispanic white groups) and 3 included African-American patients recruited from a municipal hospital (African-American groups). A hypothetical scenario of a dying relative was used to explore preferences for the content and structure of communication.
Thirty-six non-Hispanic white participants and 34 African-American participants.
Content analysis of focus group transcripts.
Non-Hispanic white participants were more exclusive when recommending family participants in end-of-life discussions while African-American participants preferred to include more family, friends and spiritual leaders. Requested content varied as non-Hispanic white participants desired more information about medical options and cost implications while African-American participants requested spiritually focused information. Underlying values also differed as non-Hispanic white participants expressed more concern with quality of life while African-American participants tended to value the protection of life at all costs.
The groups differed broadly in their preferences for both the content and structure of end-of-life discussions and on the values that influence those preferences. Further research is necessary to help practitioners engage in culturally sensitive end-of-life discussions with patients and their families by considering varying preferences for the goals of end-of-life care communication.
Purpose: This study examined the extent and nature of family conflict addressed by interdisciplinary team members caring for low-income older adults with advanced chronic disease in their last 6 months of life. Design and methods: The results are drawn from a larger longitudinal, multimethod case study designed to understand how end-of-life care is provided in an innovative, fully "integrated" community-based managed care program serving low-income, frail elders. Sources of data analyzed include quantitative and qualitative responses from survey data on 120 deceased elders, five focus groups with interdisciplinary team members, and two in-depth interviews with social workers. Results: Family conflict was present among 55% of the sample, and rated as somewhat to extremely important in 44% of the deaths. Team members felt that they were either very or extremely successful in addressing conflict in only 38% of the deaths. An explanatory matrix of family conflict at the end of life was developed depicting (1) the nature of end-of-life conflict, (2) family context, (3) conditions, (4) contributing factors, (4) intervening processes, and (5) consequences. Subcategories of each component of the theoretical model were identified and are illustrated by the narrative data. Implications: The "lessons learned" in this setting suggest program development and practice recommendations for addressing family conflict and improving end-of-life care for vulnerable older adults and their family members.
Social workers from clinical, academic, and research settings met in 2002 for a national Social Work Leadership Summit on Palliative and End-of-Life Care. Participants placed the highest priority on the development and broad dissemination of a summary document of the state-of-the-art practice of social work in palliative and end-of-life care. Nine Summit participants reviewed the literature and constructed this detailed description of the knowledge, skills, and values that are requisite for the unique, essential, and appropriate role of social work. This comprehensive statement delineates individual, family, group, team, community, and organizational interventions that extend across settings, cultures, and populations and encompasses advocacy, education, training, clinical practice, community organization, administration, supervision, policy, and research. This document is intended to guide preparation and credentialing of professional social workers, to assist interdisciplinary colleagues in their collaboration with social workers, and to provide the background for the testing of quality indicators and "best practice" social work interventions.
Spirituality and religion have been intertwined with medical care throughout history. In the past few decades, increasing emphasis has been placed on the interaction of patients belief systems and impact on their physical and mental health. Tools to assess spirituality, religious beliefs, and value systems have been developed to help physicians integrate these domains into the realm of medical care. A Consensus Conference sponsored by the Archstone Foundation recently published a report with recommendations for integrating spiritual care and improving palliative care. This brief review offers a step-wise implementation of these recommendations in long-term care.
As a result of profound worldwide demographic change, physicians will increasingly care for patients from cultural backgrounds other than their own. Differences in beliefs, values, and traditional health care practices are of particular relevance at the end of life. Health care providers and patients and families may not have shared understandings of the meaning of illness or death and may not agree on the best strategies to plan for the end of life or to alleviate pain and suffering. Good end-of-life care may be complicated by disagreements between physicians and patients, difficult interactions, or decisions the physician does not understand. Challenges may result from cultural differences between the patient's background and traditional medical practice. Values so ingrained in physicians as to be unquestioned may be alien to patients from different backgrounds. Physicians need to be sensitive to cultural differences and to develop the skills necessary to work with patients from diverse backgrounds. Community and cultural ties provide a source of great comfort as patients and families prepare for death. This paper describes two cases that raise issues about cross-cultural end-of-life practice and suggests strategies for negotiating common problems. Physicians should assess the cultural background of each patient and inquire about values that may affect care at the end of life. They should become aware of the specific beliefs and practices of the populations they serve, always remembering to inquire whether an individual patient adheres to these cultural beliefs. Attention to cultural difference enables the physician to provide comprehensive and compassionate palliative care at the end of life.
Culturally competent healthcare has emerged as a policy solution to racial and ethnic health disparities in the United States. Current research indicates that patient-centered care is a central component of culturally competent healthcare, and a rich literature exists on how to elicit patients' lifeworld voices through open-ended questions, sensitive communication skills, and power-sharing interaction styles. But it remains largely unclear how doctors create linkages between cultures of medicine and lifeworld as two sets of incongruent meaning systems. Without such linkages, a doctor lacks the cultural tool to incorporate her patient's assumptions or frameworks into the voice of medicine, rendering it difficult to (at least partially) expand and transform the latter from within. This study explores how doctors perform this bridging work, conceptualized as cultural brokerage, on the job. Cultural brokerage entails mutual inclusion of different sets of schemas or frameworks with which people organize their meanings and information. Based on 24 in-depth interviews with primary care physicians in Northern California, this study inductively documents four empirical mechanisms of cultural brokerage: 'translating between health systems', 'bridging divergent images of medicine', 'establishing long-term relationships', and 'working with patients' relational networks'. Furthermore, the study argues that cultural brokerage must be understood as concrete 'cultural labor', which involves specific tasks and requires time and resources. I argue that the performance of cultural brokerage work is embedded in the institutional contexts of the clinic and therefore faces two macro-level constraints: the cultural ideology and the political economy of the American healthcare system.
Academic researchers and professionals from a hospice organization collaborated to assess physical, emotional, social, economic, and spiritual strain stemming from providing care to a terminally ill older relative among 162 family caregivers to older adults newly admitted to hospice home care. The study investigated predictors of the different types of strain, as well as cumulative strain. Hierarchical multiple regressions revealed that caregivers' age and race, hospice patients' major illnesses (particularly cancer), caregivers' appraisals of their situation, and resources were significant risk or protective factors for caregiver strain, although the predictors varied by type of strain and amount of strain. Discussion focuses on the importance of identifying family caregivers at risk of higher strain during hospice home care and implications for family caregiver interventions.
To explore whether models of health behavior change can help to inform interventions for advance care planning (ACP).
Qualitative cross-sectional study.
Community.
Sixty-three community-dwelling persons aged 65 and older and 30 caregivers with experience as surrogate decision-makers.
In focus groups conducted separately with older persons and caregivers, participants were asked to discuss ways they had planned for future declines in health and why they had or had not engaged in such planning. Transcripts were analyzed using grounded theory.
Four themes illustrated the potential of applying models of health behavior change to improve ACP. (1) Participants demonstrated variable readiness to engage in ACP and could be in different stages of readiness for different components of ACP, including consideration of treatment goals, completion of advance directives, and communication with families and physicians. (2) Participants identified a wide range of benefits of and barriers to ACP. (3) Participants used a variety of processes of change to progress through stages of readiness, and ACP was only one of a broader set of behaviors that participants engaged in to prepare for declines in their health or for death. (4) Experience with healthcare decision-making for loved ones was a strong influence on perceptions of susceptibility and engagement in ACP.
The variability in participants' readiness, barriers and benefits, perceptions of susceptibility, and use of processes to increase readiness for participating in each component of ACP suggests the utility of customized, stage-specific interventions based on individualized assessments to improve ACP.
Cultural beliefs and values are thought to account for differences between African Americans and whites in the use of advance directives and beliefs about hospice care, but few data clarify which beliefs and values explain these differences. Two hundred five adults aged 65 and older who received primary care in the Duke University Health System were surveyed. The survey included five scales: Hospice Beliefs and Attitudes, Preferences for Care, Spirituality, Healthcare System Distrust, and Beliefs About Dying and Advance Care Planning. African Americans were less likely than white subjects to have completed an advance directive (35.5% vs 67.4%, P<.001) and had less favorable beliefs about hospice care (Hospice Beliefs and Attitudes Scale score, P<.001). African Americans were more likely to express discomfort discussing death, want aggressive care at the end of life, have spiritual beliefs that conflict with the goals of palliative care, and distrust the healthcare system. In multivariate analyses, none of these factors alone completely explained racial differences in possession of an advance directive or beliefs about hospice care, but when all of these factors were combined, race was no longer a significant predictor of either of the two outcomes. These findings suggest that ethnicity is a marker of common cultural beliefs and values that, in combination, influence decision-making at the end of life. This study has implications for the design of healthcare delivery models and programs that provide culturally sensitive end-of-life care to a growing population of ethnically diverse older adults.
Withdrawing life support is always difficult. When patients and health professionals are from different ethnic backgrounds, value systems that form the basis for such decisions may conflict. Many cultural groups do not place the same emphasis on patient autonomy and self-determination that Western society does and find the idea of terminating life support offensive. Although physicians should never assume patients will respond in a particular way because of their ethnic background, issues of life support should be discussed in a culturally sensitive way. African-American, Chinese, Jewish, Iranian, Filipino, Mexican-American, and Korean patients were surveyed about their views on life support. The findings reported here, although not meant to be definitive, should add to health professionals' understanding about diverse beliefs around life-and-death issues. By becoming aware of this diversity of beliefs, health professionals can avoid the damage to the physician-patient relationship caused by conflicting value systems.
The lack of understanding of the historical perspectives and cultural factors impact all aspects of hospice care for African Americans. This article addresses these areas in a broad context as well as the skills, behavior, and performance required to provide appropriate, competent, and culturally sensitive care to the terminally ill and dying African American and other culturally diverse population groups. [Single or multiple copies of this article are available from The Haworth Document Delivery Service: 1-800-342-9678, 9:00 a.m. - 5:00 pm. (EST).]
Numerous studies have shown almost uniformly positive opinions among patients and physicians regarding the concept of advance directives (either a healthcare proxy or living will). Several of these studies have also shown that the actual use of advance directives is significantly lower than this enthusiasm would suggest, but they have not explained the apparent discordance. Nor have researchers explained why members of minority groups are much less likely to complete advance directives than are white patients. In this study, we used a focus group methodology to examine the ways in which diverse populations of patients view the medical, philosophical, and practical issues surrounding advance directives. We were motivated by the significantly lower prevalence of advance directives among African-American and Hispanic patients at one urban teaching hospital (18% for Caucasians, 4% for African-Americans, and 2% for Hispanics). Our premise was that African-American and Hispanic populations, who have had higher rates of morbidity and mortality across numerous disease categories, and historically have had limited access to care and opportunities to discuss health concerns, may be more suspicious about the right of autonomy that an advance directive is designed to ensure.
The ethical and legal implications of decisions to withhold and withdraw life support have been widely debated. Making end-of-life decisions is never easy, and when the cultural background of doctor and patient differ, communication about these issues may become even more difficult. In this study, we examined the attitudes of people aged 65 and older from different ethnic groups toward foregoing life support. To this end, we conducted a survey of 200 respondents from each of four ethnic groups: European-American, African-American, Korean-American and Mexican-American (800 total), followed by in-depth ethnographic interviews with 80 respondents. European-Americans were the least likely to both accept and want life-support (p < 0.001). Mexican-Americans were generally more positive about the use of life-support and were more likely to personally want such treatments (p < 0.001). Ethnographic interviews revealed that this was due to their belief that life-support would not be suggested if a case was truly hopeless. Compared to European-Americans, Korean-Americans were very positive regarding life-support (RR = 6.7, p < 0.0001); however, they did not want such technology personally (RR = 1.2, p = 0.45). Ethnographic interviews revealed that the decision of life support would be made by their family. Compared to European-Americans, African-Americans felt that it was generally acceptable to withhold or withdraw life-support (RR = 1.6, p = 0.06), but were the most likely to want to be kept alive on life-support (RR = 2.1, p = 0.002). Ethnographic interviews documented a deep distrust towards the health care system and a fear that health care was based on one's ability to pay. We concluded that (a) ethnicity is strongly related to attitudes toward and personal wishes for the use of life support in the event of coma or terminal illness, and (b) this relationship was complex and in some cases, contradictory.
This article describes a participatory action research project addressing the problem of African American access to and use of hospice. Qualitative interviews conducted with six African American pastors resulted in the identification of major themes used for development of a scale to measure barriers to hospice. A subsequent quantitative study documenting these barriers was conducted with 127 African American and European Americans. Results of both studies, which were used to further social action efforts in the community, indicated the cultural barriers of differences in values regarding medical care and differences in spiritual beliefs between African Americans and European Americans. Results also indicated institutional barriers, including lack of knowledge of services, economic factors, lack of trust by African Americans in the health care system, and lack of diversity among health care staff. Implications for social work practice and policy are discussed.
We describe a half-day workshop to teach third-year medical students three focused end-of-life care skills: breaking bad news, discussing advance directives, and assessing and managing pain. Our workshop included a readers' theater exercise and three role-play exercises. In two of the workshops, faculty members played the role of patients. We used readers' theater to engage the students on an emotional level and set a reflective tone for the workshop. Evaluations reflected that most respondents felt that the workshop enhanced their understanding and ability to address these skills with patients. By 6 months, many students reported applying these skills to patient care in a way they thought was effective.
Patient control and autonomy are core values in Western bioethics and important components of end-of-life (EOL) care. However, the centrality of the patient as decision maker may not be relevant to culturally diverse groups of people. The purpose of this article is to present results of a literature review of patient control and ethnicity within the context of EOL care. The review revealed that the interplay between control and ethnicity in EOL care is complex and unpredictable. Implications for clinical care and future research are presented.
Studies show that African Americans are less likely than other ethnic groups to complete advance directives. However, what influences African Americans' decisions to complete or not complete advance directives is unclear.
Using a faith-based promotion model, 102 African Americans aged 55 years or older were recruited from local churches and community-based agencies to participate in a pilot study to promote advance care planning. Focus groups were used to collect data on participants' preferences for care, desire to make personal choices, values and attitudes, beliefs about death and dying, and advance directives. A standardized interview was used in the focus groups, and the data were organized and analyzed using NUDIST 4 software (QRS Software, Victoria, Australia).
Three fourths of the participants refused to complete advance directives. The following factors influenced the participants' decisions about end-of-life care and completion of an advance directive: spirituality; view of suffering, death, and dying; social support networks; barriers to utilization; and mistrust of the health care system.
The dissemination of information apprises individuals of their right to self-determine about their care, but educational efforts may not produce a significant change in behavior toward completion of advance care planning. Thus, ongoing efforts are needed to improve the trust that African Americans have in medical and health care providers.
Past efforts in the palliative and end-of-life care field have been laudably directed at increasing the cultural competence of providers and institutions and improving outreach to multicultural communities. Today, however, we face new challenges with regard to racial, cultural, and ethnic factors at the end of life. We now have documented evidence of disparities in almost every area of health care. In addition, breakthroughs in genomics research, including "race-based therapeutics," have redefined the meaning of our human differences. These trends, unfolding in an increasingly polarized post-9/11 world, greatly challenge our understanding of concepts of race, culture, and ethnicity. By definition, when considering these concepts, our focus shifts from the individual to that of group membership. In turn, this suggests using a population-based or epidemiological approach, which at once reveals inequalities and inequities in mortality patterns across diverse groups. Understanding and serving the needs of specific populations requires us to apply a framework of equity and to consider strategies to eliminate disparities. These include identifying sources of bias and discrimination in health care; enhancing the collection of racial, ethnic, and other demographic data; and increasing the representation of a range of diverse population groups in well designed qualitative and quantitative research. Using an epidemiological framework does not suggest, however, that we lose sight of dying individuals and their families. At the end of life, an individualized approach to care with a focus on quality is paramount for any patient, regardless of racial, ethnic, or cultural background.
We examined differences in hospice use rates among blacks and whites and investigated trends in racial differences in hospice patients during the period 1992 through 2000. We tested differences in length of hospice survival from hospice enrollment to death between black and white patients during this period.
We analyzed data from the 1991-2000 Underlying and Multiple Cause-of-Death Files and the 1992-2000 National Home and Hospice Care Surveys using z tests, chi tests, and Cox regression models.
Compared with 1992, the hospice use rate doubled for white patients (P < 0.0001) and increased almost 4-fold for black patients (P < 0.0001) in 2000. Hospice use rates among black patients were significantly lower than those among white patients from 1992 to 1994 but not from 1996 to 2000. Black hospice patients discharged throughout the 1990s were more likely to be younger, have Medicaid-only as their payment source, and have HIV/AIDS than their white counterparts. Black hospice patients were more likely to be referred by hospitals than white hospice patients during 1996 to 2000. Throughout the 1990s, length of hospice survival did not significantly differ between black and white hospice patients after adjusting for covariates.
Hospice use rates significantly increased for both whites and black patients. Black patients had lower hospice use rates than white patients from 1992 to 1994, but not from 1996 to 2000, which may reflect the diffusion of hospice care to black patients with the rapid growth in hospice programs. Despite differences in patient characteristics, the length of hospice survival was similar among both groups. Future research is needed to assess whether racial disparities exist in quality of hospice care.
Recent trends in medicine reflect an attempt to be more patient-centered and while this is progress from the disease- or provider- focused model familiar in healthcare, the experiences and contributions of family as caregivers continue to be overlooked in some settings. The family-centered care model, developed most notably in pediatrics, but emerging in HIV, cancer, and aging, is presented as a resource to increase family involvement at the end of life. In this paper, family-centered care is defined, caregiving trends including support needs of formal and informal caregivers are discussed, and barriers to family-centered services are identified. Reintroducing family into the focus of care at the end of life is the primary goal of this paper. The family- centered model of care offers an appropriate framework for understanding the value of family in end-of-life care and fits well with social work perspectives that understand individuals in the context of their family system and greater environment.
To better understand what matters to African American elders who are faced with issues of death, dying, and end-of-life care, a qualitative study was conducted to elicit their perspective.
Focus groups were convened across the state of Connecticut. A total of 196 individuals participated in the 90-minute interview sessions. Using an interview guide, a trained moderator conducted the racially homogeneous discussion groups. Transcriptions of the group narratives with 22 older African Americans were coded to identify themes. Data were organized and analyzed using NUD-IST 4 and constant comparative method of qualitative data analysis.
Five major themes emerged from the focus group data on older African Americans: (1) spirituality, (2) burden on family, (3) trust, (4) health insurance coverage, and (5) cultural concerns.
Recommendations are made for outreach education, involvement of informal helpers, and a level of acceptability in practice for diverse care needs.
This study assesses whether racial differences exist in the willingness to use hospice services in the future among black and white adults and potential factors that may contribute to such differences.
Data were collected from the City of Cincinnati component of the Greater Cincinnati Survey. A total of 510 random-digit-dialed telephone interviews were completed, with 473 adults included in the analyses (220 blacks, 253 whites).
Relative to whites, blacks were significantly less likely to consider using hospice if they were near the end of life because of a terminal illness and less likely to do so even if their doctor strongly recommended its use. This reluctance was related to their prior exposure to hospice as well as their trust in their doctor to make the right end-of-life care decisions. Like whites, blacks who had a positive prior exposure to hospice were more willing to consider using hospice than those who have not been exposed to hospice, but only for those blacks who trust their doctor. For blacks who do not trust their doctor, those with prior hospice exposure, regardless of their level of satisfaction, were less willing to consider hospice than those without prior exposure.
Efforts to increase utilization of hospice services among blacks requires greater insight into the experiences that they have with hospice services for their family members and friends as well as their level of trust in their physician's decision making about end-of-life care.