New public health approaches to palliative care highlight the role of communities in care, yet there is little evidence of studies on community-led initiatives in the palliative care context. Therefore, the aim of this study, which took place in Auckland, New Zealand, was to (1) explore Pacific family carers’ views on what they need to feel supported as they care for older family members at the end of life and (2) to devise a resource that reflects their views that may be used to raise community awareness about these needs. This was achieved using a Participatory Action Research (PAR) framework in which a focus group was carried out and a work group formed to implement the focus group’s recommendations that were informed by a thematic analysis of the focus group data. The analysis resulted in the foregrounding of four themes, with the focus of this paper being on the 4th theme, the centrality of spirituality for a group of Pacific caregivers. This emphasis was chosen due to it being an underexplored topic in the palliative care literature. Co-creating resources based on research with community members allows for the development of tailored approaches of significance to that community, in this instance, a music video.
BACKGROUND: The linguistic and cultural diversity found in European societies creates specific challenges to palliative care clinicians. Patients' heterogeneous habits, beliefs and social situations, and in many cases language barriers, add complexity to clinicians' work. Cross-cultural teaching helps palliative care specialists deal with issues that arise from such diversity. This study aimed to provide interested educators and decision makers with ideas for how to implement cross-cultural training in palliative care.
METHODS: We conducted four focus groups in French- and Italian-speaking Switzerland. All groups consisted of a mix of experts in palliative care and/or cross-cultural teaching. The interdisciplinary research team submitted the data for thematic content analysis.
RESULTS: Focus-group participants saw a clear need for courses addressing cross-cultural issues in end-of-life care, including in medical disciplines outside of palliative care (e.g. geriatrics, oncology, intensive care). We found that these courses should be embedded in existing training offerings and should appear at all stages of curricula for end-of-life specialists. Two trends emerged related to course content. One focuses on clinicians' acquisition of cultural expertise and tools allowing them to deal with complex situations on their own; the other stresses the importance of clinicians' reflections and learning to collaborate with other professionals in complex situations. These trends evoke recent debates in the literature: the quest for expertise and tools is related to traditional twentieth century work on cross-cultural competence, whereas reflection and collaboration are central to more recent research that promotes cultural sensitivity and humility in clinicians.
CONCLUSION: This study offers new insights into cross-cultural courses in palliative and end-of-life care. Basic knowledge on culture in medicine, variable practices related to death and dying, communication techniques, self-reflection on cultural references and aptitude for interprofessional collaboration are central to preparing clinicians in end-of-life settings to work with linguistically and culturally diverse patients.
Background: The Western individualistic understanding of autonomy for advance care planning is considered not to reflect the Asian family-centered approach in medical decision-making. The study aim is to compare preferences on timing for advance care planning initiatives and life-sustaining treatment withdrawal between terminally-ill cancer patients and their family caregivers in Taiwan.
Methods: A prospective study using questionnaire survey was conducted with both terminally-ill cancer patient and their family caregiver dyads independently in inpatient and outpatient palliative care settings in a tertiary hospital in Northern Taiwan. Self-reported questionnaire using clinical scenario of incurable lung cancer was employed. Descriptive analysis was used for data analysis.
Results: Fifty-four patients and family dyads were recruited from 1 August 2019 to 15 January 2020. Nearly 80% of patients and caregivers agreed that advance care planning should be conducted when the patient was at a non-frail stage of disease. Patients’ frail stage of disease was considered the indicator for life-sustaining treatments withdrawal except for nutrition and fluid supplements, antibiotics or blood transfusions. Patient dyads considered that advance care planning discussions were meaningful without arousing emotional distress.
Conclusion: Patient dyads’ preferences on the timing of initiating advance care planning and life-sustaining treatments withdrawal were found to be consistent. Taiwanese people’s medical decision-making is heavily influenced by cultural characteristics including relational autonomy and filial piety. The findings could inform the clinical practice and policy in the wider Asia–Pacific region.
Over time, end of life care has been heavily influenced by the systems of religion, ethics and spirituality. The Sikh religion was started by Guru Nanak Dev Ji in 1469. It has a unique philosophical understanding of life, death and God which can be relevant to commonly encountered clinical scenarios. Concepts such as ‘Ik-Oankar’, Hukam (God’s will), ego and karma all influence how practising Sikhs respond to situations in everyday life. Understanding the spiritual underpinnings of the Sikh religion is therefore important for clinicians caring for this group of patients. This article will explore the fundamental concepts of the Sikh religion and how these apply to common scenarios encountered within palliative care.
Strategies to increase appropriateness of EoL care, such as shared decision making (SDM), and advance care planning (ACP) are internationally embraced, especially since the COVID-19 pandemic. However, individuals preferences regarding EoL care may differ internationally. Current literature lacks insight in how preferences in EoL care differ between countries and continents. This study's aim is to compare Dutch and Japanese general publics attitudes and preferences toward EoL care, and EoL decisions.
Methods: a cross-sectional survey design was chosen. The survey was held among samples of the Dutch and Japanese general public, using a Nationwide social research panel of 220.000 registrants in the Netherlands and 1.200.000 in Japan. A quota sampling was done (age, gender, and living area). N = 1.040 in each country.
More Japanese than Dutch citizens tend to avoid thinking in advance about future situations of dependence (26.0% vs 9.4%; P = .000); say they would feel themselves a burden for relatives if they would become dependent in their last phase of life (79.3% vs 47.8%; P = .000); and choose the hospital as their preferred place of death (19.4% vs 3.6% P = .000). More Dutch than Japanese people say they would be happy with a proactive approach of their doctor regarding EoL issues (78.0% vs 65.1% JPN; P = .000).
Preferences in EoL care substantially differ between the Netherlands and Japan. These differences should be taken into account a) when interpreting geographical variation in EoL care, and b) if strategies such as SDM or ACP – are considered. Such strategies will fail if an international “one size fits all” approach would be followed.
PURPOSE: Although some research has been done on end-of-life (EOL) preferences and wishes, our knowledge of racial differences in the EOL wishes of non-Hispanic White and non-Hispanic Black middle-aged and older adults is limited. Previous studies exploring such racial differences have focused mainly on EOL decision-making as reflected in advance healthcare directives concerning life-sustaining medical treatment. In need of examination are aspects of EOL care that are not decision-based and therefore not normally covered by written advance healthcare directives. This study focuses on racial differences in non-decision-based aspects of EOL care, that is, EOL care that incorporates patients' beliefs, culture, or religion.
AIM: To test the combined effects of race, socioeconomic status, health status, spirituality, perceived discrimination and medical mistrust on the EOL non-decision-based desires and wishes of a representative sample of non-Hispanic White and non-Hispanic Black older California adults.
METHODS: This cross-sectional study used data from the Survey of California Adults on Serious Illness and End-of-Life 2019. To perform data analysis, we used multiple logistic regression models.
RESULTS: Non-Hispanic Blacks reported more EOL non-decision-based desires and wishes than non-Hispanic Whites. In addition to gender, age, and education other determinants of EOL non-decision-based medical desires and wishes included perceived and objective health status, spirituality, and medical trust. Poverty level, perceived discrimination did not correlate with EOL medical wishes.
CONCLUSION: Non-Hispanic Blacks desired a closer relationship with their providers as well as a higher level of respect for their cultural beliefs and values from their providers compared with their White counterparts. Awareness, understanding, and respecting the cultural beliefs and values of older non-Hispanic Black patients, that usually are seen by non-Hispanic Black providers, is the first step for meaningful relationship between non-Hispanic Black patients and their providers that directly improve the end-of-life quality of life for this segment of our population.
With an increasingly ageing population there will be a rising demand for palliative care, including from older migrants and ethnic minorities. While many (future) physicians are unfamiliar with specific needs of older migrants and ethnic minorities regarding care and communication in palliative care, this may be challenging for them to deal with. Moreover, even many medical teachers also feel unprepared to teach palliative care and culturally sensitive communication to students. In order to support medical teachers, we suggest twelve tips to teach culturally sensitive palliative care to guide the development and implementation of teaching this topic to medical students. Drawn from literature and our own experiences as teachers, these twelve tips provide practical guidance to both teachers and curriculum designers when designing and implementing education about culturally sensitive palliative care.
BACKGROUND: Previous research has found racial differences in hospice knowledge and misconceptions about hospice care, which may hinder access to hospice care. Asian Indians are a rapidly growing population in the United States, yet limited research has focused on their beliefs toward end-of-life care. This project investigates Indian Americans' knowledge of and attitudes toward hospice care and advance care planning.
PROCEDURES: A cross-sectional design was employed using surveys about participants' knowledge of and attitudes toward hospice care and advance care planning. Surveys were conducted among Indian Americans, age 60 and over, recruited from Indian cultural centers in Northern California. The participants were first asked questions about hospice care. They were then given a summary explanation of hospice care and later asked about their attitudes toward hospice care. Data were analyzed using descriptive and bivariate analyses.
RESULTS: Surveys were completed by 82 participants. Findings revealed that 42.5% of respondents had an advance directive and 57.1% had named a health care proxy. Only 10% of respondents had known someone on hospice care and 10.4% correctly answered 4-5 of the knowledge questions. After being informed about hospice care, 69.6% of participants agreed that if a family member was extremely ill, they would consider enrolling him/her in hospice.
CONCLUSIONS: This study's results present a need for greater education about hospice services among older Asian Indians. Health practitioners should remain cognizant of potential misconceptions of hospice and cultural barriers that Asian Indians may have toward hospice care, so they can tailor conversations accordingly.
BACKGROUND: Moral distress is a state in which a clinician cannot act in accordance with their ethical beliefs because of external constraints. Physician trainees, who work within rigid hierarchies and who lack clinical experience, are particularly vulnerable to moral distress. We examined the dynamics of physician trainee moral distress in end-of-life care by comparing experiences in two different national cultures and healthcare systems.
OBJECTIVE: We investigated cultural factors in the US and the UK that may produce moral distress within their respective healthcare systems, as well as how these factors shape experiences of moral distress among physician trainees.
DESIGN: Semi-structured in-depth qualitative interviews about experiences of end-of-life care and moral distress.
PARTICIPANTS: Sixteen internal medicine residents in the US and fourteen junior doctors in the UK.
APPROACH: The work was analyzed using thematic analysis.
KEY RESULTS: Some drivers of moral distress were similar among US and UK trainees, including delivery of potentially inappropriate treatments, a poorly defined care trajectory, and involvement of multiple teams creating different care expectations. For UK trainees, healthcare team hierarchy was common, whereas for US trainees, pressure from families, a lack of guidelines for withholding inappropriate treatments, and distress around physically harming patients were frequently cited. US trainees described how patient autonomy and a fear of lawsuits contributed to moral distress, whereas UK trainees described how societal expectations around resource allocation mitigated it.
CONCLUSION: This research highlights how the differing experiences of moral distress among US and UK physician trainees are influenced by their countries' healthcare cultures. This research illustrates how experiences of moral distress reflect the broader culture in which it occurs and suggests how trainees may be particularly vulnerable to it. Clinicians and healthcare leaders in both countries can learn from each other about policies and practices that might decrease the moral distress trainees experience.
Background: Widespread community engagement in advance care planning (ACP) is needed to overcome barriers to ACP implementation.
Objective: Develop, implement, and evaluate a model for community-based ACP in rural populations with low English language fluency and health care access using lay patient navigators.
Design: A statewide initiative to improve ACP setting/subjects—trained in a group session approach, bilingual patient navigators facilitated 1-hour English and Spanish ACP sessions discussing concerns about choosing a surrogate decision maker and completing an advance directive (AD). Participants received bilingual informational materials, including Frequently Asked Questions, an AD in English or Spanish, and Goal Setting worksheet.
Measurement: Participants completed a program evaluation and 4-item ACP Engagement Survey (ACP-4) postsession.
Results: For 18 months, 74 ACP sessions engaged 1034 participants in urban, rural, and frontier areas of the state; 39% were ethnically diverse, 69% female. A nurse or physician co-facilitated 49% of sessions. Forty-seven percent of participants completed an ACP-4 with 29% planning to name a decision maker in the next 6 months and 21% in the next 30 days; 31% were ready to complete an AD in the next 6 months and 22% in the next 30 days. Evaluations showed 98% were satisfied with sessions. Thematic analysis of interviews with facilitators highlighted barriers to delivering an ACP community-based initiative, strategies used to build community buy-in and engagement, and ways success was measured.
Conclusion: Patient navigators effectively engaged underserved and ethnically diverse rural populations in community-based settings. This model can be adapted to improve ACP in other underserved populations.
Les mesures de confinement qui prévalent dans plus d'une centaine de pays touchés par la pandémie de COVID-19 ont bouleversé de manière tragique l'accompagnement des personnes en fin de vie et le processus de deuil de leurs proches aidants. Dans cet article, nous recensons les écrits sur le deuil et analysons les conséquences potentielles du contexte de pandémie sur l'expérience des individus endeuillés. Ensuite, nous explorons les modalités de soutien alternatives qui s'offrent aux personnes éprouvées par la perte d'un proche en raison de la pandémie. Puis, en nous appuyant sur la littérature répertoriée et sur le modèle des communautés compatissantes, nous présentons le projet "J'accompagne", dont la mission est de créer une communauté virtuelle de soutien autour des proches aidants et des endeuillés par la COVID-19.
Australia is one of the most successful multi-cultural countries in the world, resulting from continuous immigration for the last 70 years or so. Australia is home for people from almost 200 countries with more than one in five speaking a language other than English at home. Some people arrive in Australia seeking protection from conflict in their own country. They may seek protection as a refugee and in the meantime live in the community while awaiting the outcome of their asylum request. Drawing on a story of one asylum seeker, this paper describes some of the key considerations required in caring for an asylum seeker who is facing the end of their life, making recommendations for addressing their often-complex care needs.
Background: Patients often view “palliative care” (PC) as an approach that is synonymous with end-of-life and death, leading to shock and fear. Differing cultural and social norms and religious affiliations greatly determine perception of PC among diverse populations.
Methods: This prospective observational study aimed to explore perceptions of PC among South Asian community members at one Canadian site. Patients who identified themselves as being of South Asian origin were consented and enrolled at a PC Clinic at a community hospital in Brampton, Ontario serving a large South Asian population. Participants filled out an 18-question survey created for the study and responded to a semi-structured interview consisting of 8 questions that further probed their perceptions of PC. Survey responses and semi-structured interviews content were analyzed by four authors who reached consensus on key exploratory findings.
Results: Thirty-four participants of South Asian origin were recruited (61.8% males), and they were distributed by their age group as follows: [(30–49) - 18%; (50–64) – 21%; (65–79) - 41%; (= 80) – 21%]. Five main exploratory findings emerged: (i) differing attitudes towards talking about death; (ii) the key role of family in providing care; (iii) a significant lack of prior knowledge of PC; (iv) a common emphasis on the importance of alleviating suffering and pain to maintain comfort; and (v) that cultural values, faith, or spiritual belief do not pose a necessary challenge to acceptance of PC services.
Conclusions: Observations from this study provide a source of reference to understand the key findings and variability in perceptions of palliative care in South Asian communities. Culturally competent interventions based on trends observed in this study could assist Palliative Physicians in delivering personalized care to South Asian populations.
Background: Prolonged grief disorder (PGD) is a new mental health disorder included in the WHO ICD-11 however, the operationalization of the disorder criteria still needs to be empirically validated, particularly in different cultural contexts. Here we provide a preliminary validation study of the new International Prolonged Grief Disorder Scale (IPGDS) that serves to be the first self-report questionnaire directly based on the ICD-11 PGD and contains culturally adapted items.
Methods: In addition to core symptom items new culturally specific items were developed in two phases. Phase 1: key informant interviews with 10 German-speaking and 14 Chinese experts in grief and mental health, followed by a focus group with four bereaved German-speaking participants. Phase 2: 214 German-speaking and 325 Chinese bereaved participants completed self-report questionnaires.
Results: Phase 1 resulted in 19 potential culturally relevant items (e.g. feeling stuck in grief). Phase 2 exploratory factor analysis confirmed the one-dimensional nature of the IPGDS, additionally the 32-item scale revealed two factors (core grief and culturally specific symptoms). Psychometric analysis revealed strong internal consistency, concurrent validity and criterion validity.
Limitations: The German-speaking and Chinese samples significantly differed in terms of several demographic variables including age, gender and type of loss.
Conclusions: This preliminary validity study confirms that the IPGDS is a valid and reliable measure of the new ICD-11 PGD guidelines. This is the first scale of disordered grief to contain both core items and culturally specific supplementary items and aims to improve the clinical utility of the ICD-11 narrative approach.
In this narrative study, we investigate salient Sámi-specific aspects of a death system, inspired by Kastenbaum's model. We explore traditional Sámi knowledge derived through storytelling in go-along group discussions to gravesites at the tree-line with cultural and historical significance for the Indigenous Sámi peoples. Analysis illustrates how important material and immaterial cultural values are transferred across generations through their connection to people, place, and time-nature-bound as opposed to calendar-bound- objects, and symbols in relation to end-of-life issues. We found that the environment both shaped storytelling and became part of the stories themselves.
Aims: To explore the palliative care experiences of forced migrant children, families, and healthcare professionals (HCPs) highlighting successes, challenges, and associated practice implications.
Design: Systematic literature review.
Data Sources: The following search engines were searched from 2008 - 2018: Allied and Complementary Medicine Database, Cumulative Index to Nursing and Allied Health, MEDLINE, Embase, ProQuest, Scopus, Psycinfo, and Web of Science. Extensive reference and citation checking were also conducted.
Review Methods: Systematic review followed PRISMA guidelines with prepared PROSPERO registered protocol #CRD42019129200. English language qualitative, quantitative, or mixed methods studies were eligible for inclusion. Study quality was appraised using the Mixed Methods Appraisal Tool (MMAT).
Results: Eighteen studies (reported in 20 articles) met the final inclusion criteria. Most focused on challenges to care provision. Thematic analysis following methods proposed by Braun and Clarke was undertaken. Five themes were identified: (a) divergence of beliefs and expectations; (b) communication; (c) navigating healthcare systems; (d) burdens and coping strategies; and (e) training and knowledge. A compassionate, collaborative approach with mutual respect crossed themes and was linked to high-quality care.
Conclusion: Forced migrant families have multiple needs including physical and emotional support and help in navigating complex systems. Professional interpreters can ease communication barriers when resourced appropriately. Individualized care is crucial to addressing the intricate mosaic of culture such families present. A cultural sensitivity/insensitivity framework is presented that may help guide future interactions and priorities for those working in children's palliative care.
Impact: This systematic review explored the international experiences of palliative care for forced migrant families. The findings highlight the plight of families who experience multiple traumas and increased levels of grief and loss through their migration experiences and when caring for a child with a life-limiting condition. This research has potential to have an impact on professionals working with culturally diverse families in all palliative care settings.
Background: One of the most difficult and stressful tasks faced by health science students is having to cope with death and dying due to the emotional burden of the same. Furthermore, the moral, ethical and professional values of future health professionals are influenced by the cultures where they live.
Purpose: This study sought to compare and analyze the perception on end of life among a sample of health science students in Spain and Bolivia.
Methods: A descriptive, cross-sectional and multi-centric study. The total sample (548 students) was comprised of three groups: medical, nursing and physiotherapy students, of whom 245 were from Bolivia, and 303 were Spanish students. The measurement instruments used were the Bugen’s Coping with Death Scale and the Death Self-Efficacy Scale by Robbins.
Results: No statistically significant differences were observed between Spanish and Bolivian students (t (546) = - 0.248, p = 0.804) using the Bugen scale. This implies that there are no differences between the perception of both groups of students and that both groups use similar strategies to cope with death. Additionally, the beliefs and attitudes of both groups were similar, with Bolivian students presenting a trend towards improved scores. No differences were found between Spain and Bolivia in the results obtained on the Robbins scale, with students from both countries displaying similar skills and capabilities for facing death.
Conclusions: The beliefs on death of health science students from Spain and Bolivia were not affected by the respective cultures, type of degree studied, students’ age, or the country of origin, however, we found that students in Bolivia value death as something more natural than their Spanish counterparts.
To appropriately prepare students for this topic, education on coping with death and dying must be included within the university curriculum.
Background: Patients living in rural areas experience a variety of unmet needs that result in healthcare disparities. The triple threat of rural geography, racial inequities, and older age hinders access to high-quality palliative care (PC) for a significant proportion of Americans. Rural patients with life-limiting illness are at risk of not receiving appropriate palliative care due to a limited specialty workforce, long distances to treatment centers, and limited PC clinical expertise. Although culture strongly influences people’s response to diagnosis, illness, and treatment preferences, culturally based care models are not currently available for most seriously ill rural patients and their family caregivers. The purpose of this randomized clinical trial (RCT) is to compare a culturally based tele-consult program (that was developed by and for the rural southern African American (AA) and White (W) population) to usual hospital care to determine the impact on symptom burden (primary outcome) and patient and care partner quality of life (QOL), care partner burden, and resource use post-discharge (secondary outcomes) in hospitalized AA and White older adults with a life-limiting illness.
Methods: Community Tele-pal is a three-site RCT that will test the efficacy of a community-developed, culturally based PC tele-consult program for hospitalized rural AA and W older adults with life-limiting illnesses (n = 352) and a care partner. Half of the participants (n = 176) and a care partner (n = 176) will be randomized to receive the culturally based palliative care consult. The other half of the patient participants (n = 176) and care partners (n = 176) will receive usual hospital care appropriate to their illness.
Discussion: This is the first community-developed, culturally based PC tele-consult program for rural southern AA and W populations. If effective, the tele-consult palliative program and methods will serve as a model for future culturally based PC programs that can reduce patients’ symptoms and care partner burden.
Background: Critical care physicians often have to make challenging decisions to withhold/withdraw life-sustaining treatments. As a result of society's increasingly cultural diversity such decision making often involves patients from ethnic minority groups, which might pose extra challenges.
Objective: To investigate withholding/withdrawing life-sustaining treatments with patients from ethnic minority groups and their families during critical care.
Design: Ethnographic fieldwork (observations, in-depth interviews and reading patients' medical files).
Setting/Subjects: Eighteen patients from ethnic minority groups, their relatives, physicians and nurses were studied in one intensive care unit of a multi-ethnic urban hospital (Belgium).
Results: During decision making physicians had a very central role. The contribution of patients and nurses was limited, while families' input was more noticeable. Decision making was hampered by communication difficulties between: (1) staff and relative(s), (2) relatives, and (3) patient and relative(s). Different approaches were used by physicians to overcome difficulties, which often reflected their tendency to control decision making, for example, stressing their central role. At times their approaches reflected their inability to align families' wishes with their own, for example, when making decisions without explicitly informing relatives.
Conclusions: Withholding/withdrawing life-sustaining treatments in a multi-ethnic critic care context has a number of alarming difficulties, such as how to take families' input correctly into account. It is important that decision making happens in a cultural sensitive way and with involvement tailored to patients' and relatives' needs and in close consultation with interprofessional health care workers/other services.