Grief and loss are universal experiences for all individuals and communities. The experience of a loss due to death and the bereavement process to follow are influenced by an individual's religious values and beliefs. In this article, we discuss the Sikh bereavement process in the United States. We provide brief personal narratives as exemplar case studies, highlight religious and cultural factors, and explain potential challenges of bereavement. Finally, we discuss implications for mental health clinicians and other providers of services that surround death and dying.
Background: Diverse cultures and social contexts can exhibit different values, religious meaning systems, social norms concerned with social responsibility and interpersonal and family relations. These factors play an essential role in individuals’ decisions and preferences for end-of-life care.
Aims: To explore Taiwanese adults’ perspectives on the influences of cultural, social and contextual factors on preferences for end-of-life care.
Methods: A semi-structured face-to-face interview approach and content analysis were used. A total of 16 adults were recruited.
Findings: Major themes identified as influencing factors included social, cultural and religious aspects, professional and community resources, perceptions about end-of-life services and attitudes toward death and dying.
Discussion: This suggests that people’s end-of-life preferences can be influenced by social and cultural norms, the adequacy of systems for advance care planning, knowledge about advance directives and palliative care, and emotional reactions toward death and dying.
Conclusions: Findings provided insight into adults’ perspectives on how cultural, social norms and religious values and professional support shape individuals’ beliefs and attitudes toward death and dying as well as in end-of-life decision making. These findings contribute to our understanding of adults’ end-of-life preferences and provide guidance for health professionals and communities in assisting Taiwanese people plan for the end of life.
Sexual and gender minorities experience disparities throughout the life course. These are especially detrimental at the end-of-life and can include disenfranchised grief, homophobia and transphobia from medical staff, and forced outing. The best healthcare training approach to ameliorate health disparities is debated. Cultural competency trainings for clinicians have been commonly proposed by major medical institutions and certifying bodies to ameliorate lesbian, gay, bisexual, transgender, and queer or questioning (LGBTQ) health disparities. However, cultural competency trainings have limitations, including (1) false competence, (2) measurement issues, and (3) ecological fallacy (i.e., assuming individuals conform to the norms of their cultural group). The purpose of this commentary is to describe the limitations of cultural competency training and argue for healthcare systems to implement cultural humility trainings as a way to reduce LGBTQ health disparities at the end-of-life. The strengths of cultural humility training include focus on (1) individuals instead of their cultural groups, (2) self-reflection, and (3) active listening. While there are challenges to implementing cultural humility trainings in the health-care system, we assert that these trainings align with the aims of healthcare systems and can be an essential tool in reducing LGBTQ health disparities. We suggest practical components of successful cultural humility trainings including leadership buy-in, appropriate outcome measurements, multiple training sessions, and fostering a safe reflection space.
Dans cet article, l’auteur présente les bases théoriques et techniques du dispositif de médiation transculturelle mis à la disposition des équipes de soins palliatifs. Accompagner une famille dans cette épreuve est un défi pour toutes les équipes soignantes. Ce défi peut se révéler plus complexe encore lorsque soignants et parents ne partagent pas les mêmes références culturelles. Dans des situations d’impasse thérapeutique, la prise en compte du fait culturel – considéré non plus comme un frein, mais au contraire comme un catalyseur formidablement actif – peut non seulement enrichir l’interprétation médicale, mais aussi rendre possible une réelle rencontre entre le patient et son médecin.
End-of-life decision making frequently involves a complex balancing of clinical, cultural, social, ethical, religious and economic considerations. Achieving a happy balance of these sometimes-competing interests, however, can be particularly fraught in a family-centric society like Singapore where the family unit often retains significant involvement in care determinations necessitating careful consideration of the family's position during the decision-making process. While various decision-making tools such as relational autonomy, best interests principle and welfare-based models have been proposed to help navigate such difficult decision-making processes, their application in practical terms, however, is dubious at best. This case report is presented to highlight these issues and explore the utility of these frameworks within the Singapore end-of-life care context when the interests of the family may be dissonant from those of the patient.
St Christopher’s Hospice, London, was founded to provide specialist care to the incurably ill. We studied the dimensions of difference that set St Christopher’s Hospice apart from hospital care of the dying, focusing on physical space and social organization. Material from 1953 to 1980 from the Cicely Saunders Archive was analyzed qualitatively. Through thematic analysis, quotes were found and analyzed using open coding. Five themes were developed. Themes identified were home/homelike, community, consideration of others, link with outside world, and privacy. The hospice philosophy functioned as the catalyst for the development of the physical environment of St Christopher’s Hospice. Taking Habermas’ concept of lifeworld, it seems that, in contrast to acute care, the need for hospice to formulate their own lifeworld to support and fully engage patients was central. As lifeworlds are culture sensitive, this underlines the need for variation in design and organization of hospices around the world.
Advance care planning (ACP) is a method used for patients to express in advance their preferences for life-sustaining treatments at the end of life. With growing ethnocultural diversity in Canada, health-care providers are managing an increasing number of diverse beliefs and values that are commonly associated with preferences for intensive mechanical ventilation (MV) treatment at the end of life. This study aimed to identify and describe the approaches used by health-care providers to set advance care plans for MV with seriously ill patients from diverse ethnocultural backgrounds. Semistructured interviews were conducted with health-care providers from acute-care settings. Using a value-based approach in ACP was deemed an effective method of practice for managing and interpreting diverse beliefs and values that impact decisions for MV. However, personnel, organizational, and systemic barriers that exist continue to hinder the provision of ACP across cultures.
L’évolution actuelle des soins palliatifs conduit à plusieurs questionnements, notamment sur leur place et rôle dans le parcours de soins. Le CNSPFV, interpellé sur cette question a choisi de l’investiguer en l’abordant sous l’angle suivant « Des soins palliatifs à la médecine palliative : quels enjeux pour l’avenir ou la mission des soins palliatifs peut-elle / doit-elle se réduire à la question de la fin de vie ? »
Pour apporter des éclairages sur ce questionnement, le CNSPFV a mandaté un groupe d’experts et de praticiens. Le travail présenté dans ce document s’est ainsi attaché à réfléchir aux liens entre soins palliatifs et fin de vie aujourd’hui. Pour cela, il a cherché à comprendre les articulations actuelles entre les soins palliatifs et les différentes spécialités médicales comme par exemple la pédiatrie, la gériatrie ou la cancérologie, en France comme dans d’autres pays ; à explorer ce que les patients attendent des soins palliatifs ; et ce que certaines initiatives citoyennes proposent comme alternatives à l’offre sanitaire existante, en matière d’accompagnement de fin de vie. A l’issue de ces travaux, le groupe propose donc une clarification de différents concepts (soins palliatifs, démarche palliative, médecine palliative, culture palliative) et des axes de travail pour favoriser de meilleures conditions de fin de vie en France.
L'auteure s'interroge sur l'alignement de la vieillesse sur les critères de la jeunesse avec la culture de l'anti ageing. Même sous le concept du "bien vieillir" se cache une norme en termes de santé, d'énergie, d'efficacité, difficile à atteindre pour la plupart des personnes âgées. Cette épreuve sociale s'ajoute à l'expérience du vieillissement et de la fragilité.
Constantin Reliu had been working for twenty years as a cook in Turkey when he returned to his hometown of Barlad, Romania, to discover that, there, he was dead. His former wife had, unbeknownst to him, at some point during his stay in Turkey registered him as deceased in Romania. He has since been living a legal nightmare trying to prove to Romanian authorities that he is, in fact, alive. Reliu is not alone in finding out that the legal system is not as attuned to physiological activity or biological assessment by doctors in determining death as one might think. If one starts with the assumption that death is a purely biological concept, solely the province of doctors, Reliu's story seems entirely unrelated to the concept of death in the medical context. A brain scan would not lead to a reversal of his being assessed as dead. The story is a reminder, however, that how death is used is not just biological, and therefore that the standard of death even in the clinic must answer to cultural considerations. Values, the law, and custom matter a great deal in determining who is alive and who is not, whether in the courtroom, the coroner's office, or the clinic.
Background: An urgent need to improve palliative care in hospital has been identified. Moreover, service users consistently report care delivered by nurses in hospital as lacking compassion. Compassion is a fundamental component of nursing care and promoting compassionate care has been identified as a policy priority in many countries. To help address this within the hospital context, we recently completed research exploring bereaved family experiences of good end of life care in hospital. We found that family accounts of good care aligned with Nolan and Dewar's compassionate care framework and subsequently extended the framework to the bi-cultural context of Aotearoa, New Zealand.
Aims: In this discussion paper we explore synergies between our newly developed Kapakapa Manawa Framework: a bi-cultural approach to providing compassionate care at the end of life and the Fundamentals of Care. We argue that our framework can be used to support the implementation of the relational component of the Fundamentals of Care and the delivery of compassionate nursing practice in hospitals in Aotearoa, New Zealand.
Design: Discussion paper.
Methods: Review of relevant literature and construction of two vignettes describing good end of life care from the perspectives of bereaved family – one Maori and one non-Maori. The vignettes provide practical examples of how the values of the Kapakapa Manawa Framework can be enacted by nurses to provide compassionate care in alignment with the relationship component of the Fundamentals of Care.
Conclusions and relevance to clinical practice: Whilst the Kapakapa Manawa bi--cultural compassionate care framework has grown out of research conducted with people nearing the end of their lives, it has the potential to improve nursing care for all hospital inpatients. In addition, addressing the wider policy and health system factors detailed in the Fundamentals of Care will support its implementation in the clinical setting.
Introduction: Advance care planning (ACP) is a process in which patients, families, and providers discuss and plan for desired treatment goals. American Indian and Alaska Native people (AI/AN) have higher prevalence of many serious, life-limiting illnesses compared with the general population; yet AI/ANs use ACP considerably less than the overall population.
Method: We conducted a qualitative study to culturally adapt an existing ACP intervention for AI/ANs in two primary care settings.
Results: We found that it is important to incorporate patients' cultural values and priorities into ACP, determine who the patient wants involved in ACP conversations, and consider the culturally and locally relevant barriers and facilitators when developing an ACP intervention with AI/AN communities. Discussion: At the core, ACP interventions should be clear and understandable across populations and tailored to facilitate culturally appropriate and meaningful patient-provider communication. Our results and methodology of culturally adapting an intervention may be applicable to other underrepresented populations.
Although the use of palliative care has increased in recent years, chronically ill Americans within a racial/ethnic minority (non-White) population underutilize this supportive and comfort-giving healthcare service. Consequently, chronically ill minority Americans experience increased pain, symptom burden, and inappropriate use of healthcare resources compared to their white counterparts. A literature review was conducted to compile and synthesize the current state of research pertinent to improving the use of palliative care among chronically ill minority Americans. Selection criteria produced 18 relevant publications, which aided in developing a conceptual model that assimilated early, episodic, and late palliative care phases along the chronic illness continuum. The goal of the conceptual model was to provide a roadmap for healthcare professionals to use when designing, implementing, managing, and/or evaluating palliative care services for chronically ill minority Americans. The literature review demonstrated that minority patients benefitted the most from culturally tailored, systematic interventions (such as advanced care planning education) in all phases of palliative care, which led to increases in advance directive completion, better symptom control, and hospice utilization. The article concludes with a discussion and fictional case study portraying the importance of culturally tailored early palliative care as a catalyst for engaging minority patients in palliative care services.
Cultural competence, a clinical skill to recognise patients' cultural and religious beliefs, is an integral element in patient-centred medical practice. In the area of death and dying, physicians' understanding of patients' and families' values is essential for the delivery of culturally appropriate care. Dementia is a neurodegenerative condition marked by the decline of cognitive functions. When the condition progresses and deteriorates, patients with advanced dementia often have eating and swallowing problems and are at high risk of developing malnutrition. Enteral tube feeding is a conventional means of providing artificial nutrition and hydration to meet nutritional needs, but its benefits to the frail population are limitedly shown in the clinical evidence. Forgoing tube feeding is ethically challenging when patients are mentally incompetent and in the absence of an advance directive. Unlike some developed countries, like the United States of America, death and dying is a sensitive issue or even a taboo in some cultures in developing countries that forgoing enteral tube feeding is clinically and ethically challenging, such as China and Malaysia. This article in three parts 1) discusses the clinical and ethical issues related to forgoing tube feeding among patients with advanced dementia, 2) describes how Hong Kong Chinese, North American, and Malaysian Islamic cultures respond differently in the decision-making patterns of forgoing tube feeding for patients with advanced dementia, and 3) reiterates the clinical implications of cultural competence in end-of-life care.
PURPOSE: A culturally appropriate, patient-centered measure of the quality of dying and death is needed to advance palliative care in Africa. We therefore evaluated the Quality of Dying and Death Questionnaire (QODD) in a Kenyan hospice sample and compared item ratings with those from a Canadian advanced-cancer sample.
METHODS: Caregivers of deceased patients from three Kenyan hospices completed the QODD. Their QODD item ratings were compared with those from 602 caregivers of deceased patients with advanced cancer in Ontario, Canada, and were correlated with overall quality of dying and death ratings.
RESULTS: Compared with the Ontario sample, outcomes in the Kenyan sample (N = 127; mean age, 48.21 years; standard deviation, 13.57 years) were worse on 14 QODD concerns and on overall quality of dying and death (P values .001) but better on five concerns, including interpersonal and religious/spiritual concerns (P values .005). Overall quality of dying was associated with better patient experiences with Symptoms and Personal Care, interpersonal, and religious/spiritual concerns (P values < .01). Preparation for Death, Treatment Preferences, and Moment of Death items showed the most omitted ratings.
CONCLUSION: The quality of dying and death in Kenya is worse than in a setting with greater PC access, except in interpersonal and religious/spiritual domains. Cultural differences in perceptions of a good death and the acceptability of death-related discussions may affect ratings on the QODD. This measure requires revision and validation for use in African settings, but evidence from such patient-centered assessment tools can advance palliative care in this region.
This article examines the intersection between masculinity, military culture, and hospice and palliative care (HPC). The authors conducted a narrative literature review, supplemented with clinical annotations, to identify the impact of masculinity and military culture on the following topics salient to end-of-life care with older male veterans: pain management, mental health, coping, communication, autonomy and respect, and family roles. Findings suggest that traits associated with masculinity and military culture have an influence on the end-of-life process and HPC for older male veterans. Specifically, results suggest that older male veterans may deny or minimize physical pain, decline mental health treatment, utilize maladaptive coping strategies, avoid emotional conversations, struggle to manage perceived shifts in autonomy, and experience challenges negotiating changing family roles. The authors provide clinical recommendations for providers across various disciplines to address the aforementioned concerns with older male veterans in HPC. Overall, information presented in this article may be an important contribution to the literature for building cultural competencies with older male veterans and has the potential to improve the delivery of HPC for veterans and their families.
BACKGROUND: End-of-life (EOL) care for Latinos with chronic illness is a critically important problem. Latinos with chronic illness suffer worse health outcomes and poorer quality of care due to various issues occurring in care delivery systems. Latinos are less likely than non-Hispanic whites to prepare an advance directive (AD) for health-care decision-making that impacts treatment decisions for when EOL is near. Advance care planning (ACP) interventions tailored specifically for Latinos have rarely been implemented.
OBJECTIVE: The primary aim examines whether a motivational interviewing (MI) intervention increased rates of AD documentation among older Latinos. The secondary aim was to examine whether MI improved communication with providers and family members.
METHODS: We pilot tested a randomized controlled trial with older Latinos >50 years with one or more chronic illnesses, including cancer. Participants were randomly assigned to usual care (UC) receiving ACP education alone versus treatment (TX), which received ACP education, plus MI counseling including interactive decisional support, emotional support, and barrier navigation.
RESULTS: Results of logistic regression indicate TX group participants were significantly more likely to document an AD than UC, however were less ready to talk with health-care providers or family members. Those reporting navigational barriers for talking about dying is difficult showed a significant negative relationship for AD completion even with significant intervention effects.
CONCLUSION: When using MI to motivate individuals toward ACP EOL conversations other factors are important to consider. Further research is needed, especially among Latinos to understand best practices for ACP education and counseling for EOL care.
REVIEW QUESTION/OBJECTIVE(S): This review aims to identify and synthesize the best qualitative evidence on the experiences of Chinese immigrants receiving palliative care in their country of residence where the culture is predominantly western, and the experiences of their family carers.
INTRODUCTION: The recent increase in international immigration has led to challenges in providing culturally appropriate palliative care. Chinese populations have particular beliefs, values and practices surrounding death and filial piety. These differ significantly from those in western cultures and have significant implications for palliative care service provision. This review will explore the experiences and perceptions of Chinese immigrants and how their cultural beliefs shape their acceptance and decision making related to palliative care.
INCLUSION CRITERIA: The review will include studies on the experiences of Chinese immigrants aged over 18 years old with a terminal medical condition receiving palliative care in outpatient units, hospitals, hospices, specialist palliative care units, homes and community settings in their country of residence where the culture is predominantly western.
METHODS: Eligible studies will be studies with qualitative data including designs such as phenomenology, grounded theory, ethnography, narrative research, qualitative description, action research and feminist research published in English and Chinese. CINAHL, PsycINFO, MEDLINE, Scopus and Web of Science Core Collection will be used and grey literature will be searched using ProQuest Dissertations and Theses, OpenGrey and Caresearch. Appraisal of selected studies will be done with the Joanna Briggs Institute Qualitative Assessment and Review tool. Findings will be synthesized through a meta-aggregative approach to produce a comprehensive set of synthesized findings that can be used as a basis for evidence-based practice.
Latinos are less likely to have an advance care plan, use hospice or palliative care services, and have conversations about end of life than the general population. This article describes processes and outcomes of a Latino lay health advisor advance care planning training program in eastern North Carolina. An exploratory case study was used to understand the perspectives of Latino leaders. Two Latino leaders completed an advance care planning training in 2016. Data were generated from field notes, interviews, and observations. A description of the social and contextual conditions in the study setting facilitated data analysis. The primary finding, “planting the seeds,” was the strategy that began the conversation of advance care planning. “Planting the seeds” meant introducing the topic carefully to ensure the person is ready to listen, the information will be accepted, and capacity will be gained to make informed decisions. Training Latino lay health advisors in advance care planning has the potential to eliminate health disparities.
Introduction: End of life care of terminally ill is a sensitive topic in our socio cultural ethos. In a country where Euthanasia policies are widely debated, dignified death is a desired form of death. Euthanasia literally means "good death". In India the debate still continues on practices related to euthanasia and its legalization until recently when the verdict on the passive euthanasia has been passed by the supreme court. In addition, lack of an effective palliative care system has led to complex situations towards the end of life. Globally, it is estimated that palliative care is needed in 40-60% of all deaths. However there is no training or facility to meet this demand.
Methodology: A focus group discussion (FGD) was carried out among 22 residents in a rural area of Tamilnadu to identify the social and cultural determinants of end of life care practices. A FGD guide was prepared and after an informed consent the study was undertaken. An in depth interview was carried out among a sub group of participants.
Results: The FGD and the IDI revealed several end of life practices in the rural areas such as Thalaikoothal, Feeding the ill with holy water and sand etc. The study also revealed the major determinants leading to such practices such as the social, and cultural beliefs in addition to economical and emotional factors.
Conclusion: Several factors determine the end of life decisions in a family ranging from economical to social and cultural factors. While we are examining these factors, it is important to strengthen the palliative care provision in the country by building capacity and integrating it in primary care.