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.
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.
The purpose of this study was to examine relationships between attitudes toward planning for end-of-life (EOL) care and social supports, spirituality, distrust of the US healthcare system, and acculturation; and to investigate a relationship between attitudes and communication of EOL wishes in Iranian-American older adults. A descriptive, cross-sectional study was used. Older adults (N = 135) were surveyed using Qualtrics online software. The participants were new immigrants to the U.S., highly educated, and insured with a generally positive self-reported health status. Of this sample, 47.4% reported that they communicated their EOL wishes orally or through written documentation. Favorable attitudes toward planning were associated with acculturation and healthcare system distrust, and, inversely, were negatively associated with spirituality. No significant association was found between attitudes and social support. Favorable attitudes predicted participants’ communication of wishes. The findings can inform the provision of effective interventions to enhance culturally competent EOL care.
BACKGROUND AND OBJECTIVES: In Bahrain, maintaining life support at all costs is a cultural value considered to be embedded in the Islamic religion. We explore end-of-life decision making for brain dead patients in an Arab country where medical cultures are dominated by Western ideas and the lay culture is Eastern.
METHODS: In-depth interviews were conducted from February to April 2018 with 12 Western-educated Bahraini doctors whose medical practice often included end-of-life decision making. Discussions were about who should make withdrawal of life support decisions, how decisions are made and the context for decision making. To develop results, we used the inductive method of thematic analysis.
RESULTS: Informants considered it difficult to engage non-medical people in end-of-life decisions because of people's reluctance to talk about death and no legal clarity about medical responsibilities. There was disagreement about doctors' roles with some saying that end-of-life decisions were purely medical or purely religious but most maintaining that such decisions need to be collectively owned by medicine, patients, families, religious advisors and society. Informants practised in a legal vacuum that made their ethics interpretations and clinical decision making idiosyncratic regarding end-of-life care for brain dead patients. Participants referred to contrasts between their current practice and previous work in other countries, recognising the influences of religious and cultural dimensions on their practice in Bahrain.
CONCLUSIONS: End-of-life decisions challenge Western-trained doctors in Bahrain as they grapple with aligning respect for local culture with their training in the ethical practice of Western medicine.
Grief following a death loss is a common experience that all individuals face at some point in life. There, however, are only a few in-depth studies regarding grief in cultures around the world and specific roles that rituals and beliefs related to death may have in the grieving process. Results of interview data from eight grieving Turkish women revealed three themes: (a) metaphors of loss, (b) funeral rituals, and (c) rituals in relation to control and personal factors. Overall, participants' sense of control appeared to influence their grief experiences and perceptions of rituals.
L’article est une approche anthropologique de la mort à l’hôpital. L’analyse s’appuie sur la littérature produite sur ce sujet, sur les enquêtes menées par les deux auteures, en France et ailleurs (Madagascar et Maroc) et sur la consultation de médecine transculturelle qu’elles animent au CHU de Bordeaux. La mort et son sens y sont examinés à travers l’histoire en Occident et par des exemples de médicalisation dans d’autres contextes. Les rituels funéraires s’avèrent indispensables dans certaines cultures pour le devenir du mort et la paix des vivants. En Occident, les rituels se sont amenuisés, et la médicalisation, l’individualisme, la marginalisation des croyances religieuses, font que le sens de la mort s’est modifié. La culture de fin de vie qui est mise en œuvre dans les hôpitaux est pensée pour que la personne puisse donner un sens à sa vie et non pour la préparer à un au-delà. Des exemples sont pris dans différents services du CHU de Bordeaux. Les équipes inventent collectivement des gestes, des accompagnements par les paroles, pour que la fin de vie soit la plus apaisée. En effet, le risque le plus grave à l’hôpital est de mourir seul, condition infâme et violente que redoutent tous, patients, familles et soignants.
BACKGROUND: In increasingly multi-ethnic societies fostering cultural awareness and integration of immigrants is not only a political duty but also an obligation for social and healthcare systems. Importantly, cultural beliefs and needs strongly impact on the quality of life of cancer patients and may become even more crucial at the end of life. However, to date, ethnic and cultural aspects of palliative care are insufficiently researched.
METHODS: This qualitative study at the Medical University of Vienna included 21 staff members from different disciplines in oncology and palliative care working with patients with various cultural backgrounds at the end of life. Semi-structured interviews were performed to gain insights into specific aspects of palliative care that are important in the clinical encounter with terminally ill cancer patients with migrant backgrounds and their relatives.
RESULTS: Interviews revealed specific aspects of palliative care, which fell into four fundamental categories and were all perceived as beneficial in the clinical encounter with migrant clients: (A) structural and (B) personal conditions of the palliative care setting, (C) specific care and treatment intentions and (D) personnel requirements and attitudes.
CONCLUSION: This study revealed first insights into possibilities and prospects of transcultural palliative care for migrants and their relatives. The results might have important implications for the end of life care in this growing population.
OBJECTIVE: To explore health care providers' perceptions of the provision of palliative care in the Qikiqtaaluk (formerly known as Baffin) region of Nunavut.
DESIGN: An exploratory, qualitative, cross-sectional design using in-depth, semistructured interviews.
SETTING: Qikiqtaaluk region of Nunavut.
PARTICIPANTS: Seven physicians and 6 registered nurses who worked in Iqaluit or other northern Inuit communities in the Qikiqtaaluk region of Nunavut.
METHODS: Thirteen health care providers participated in in-person or telephone semistructured interviews, which were audiorecorded and transcribed verbatim.
MAIN FINDINGS: Interviews with the participating health care providers in the Qikiqtaaluk region of Nunavut revealed 5 complex and interwoven themes that influence the provision of comprehensive, culturally competent palliative care services to Indigenous patients: respecting Inuit culture, end-of-life care planning, and the role of family; recognizing the importance of the northern community (sense of home); being aware of the limited health care resources; recognizing the critical role of medical interpreters; and improving the quality of palliative care programs and resources, as well as health care provider training in palliative care and Inuit end-of-life care.
CONCLUSION: Health care providers in the Qikiqtaaluk region of Nunavut have identified several important themes that influence the provision of culturally sensitive and comprehensive palliative care, most notably the need to develop palliative care resources and programs. It is hoped that the results of this study can be used to help guide palliative care strategies including program development and educational initiatives for health care providers. These initiatives can help build community capacity within a currently underserviced population and improve end-of-life care services available to Nunavut patients and their families. Further studies are required to determine the perspectives of medical interpreters, as well as palliative care patients and their families.
BACKGROUND: The Integrated Palliative care Outcome Scale (IPOS) was developed for evaluating essential outcomes for palliative care patients. Our objectives here are to describe the process of a six-phase cross-cultural adaptation of IPOS to French (IPOS-Fr), highlight the difficulties encountered and strategies to solve them, and discuss the implications that adaptation may have on the validity and reliability of a questionnaire.
METHODS: The adaptation of IPOS consisted of six phases: (i) literature review and interviews with target population; (ii) forward translation to French; (iii) backward translation to English; (iv) Expert Review; (v) cognitive interviews with target population; (vi) final review.
RESULTS: Translation, cognitive interviews, and exchanges with Expert Review members allowed to make changes adapted to the target language regarding item 5 ("vomiting") and 8 ("sore or dry mouth"), and to identify and address, in the original version of IPOS, syntactic inconsistencies in language used in items 11 to 15 and methodological problems with items 11 ("anxiety about treatment and illness"), 15 ("share … as much as you wanted") and 17 ("problems addressed"). The adaptation also indicated that patients might have difficulties in interpreting items 8 ("sore or dry mouth"), 10 ("poor mobility"), 11 ("anxiety"), 12 (projected feelings of family and friends), and 14 ("feeling at peace"), thus indicating the need of monitoring during the psychometric validation.
CONCLUSIONS: Following this process, IPOS-Fr has proved content and face validity. In our case, the adaptation allowed adjustments to be made to the questionnaire and, when this was not possible, highlighted potential biases and inconsistencies during the validation. The result relied on an intertwined and iterative process of seeking and reaching semantic, conceptual, and normative equivalence. We are now assessing the psychometrical properties of IPOS-Fr.
This study aims to enrich the knowledge of the effects of traditional Chinese culture on bereavement outcomes among older Chinese, and to examine the moderating role of occupation in the relationship between traditional culture and bereavement outcomes. A sample of 352 older Chinese in widowhood was interviewed by quota sampling. A scale of faith in traditional Chinese culture was developed and confirmed by factor analysis. Complicated grief (CG) functioned as the outcome variable. Results showed that faith in traditional culture did affect CG among the sample, and previous occupation moderated the effect of traditional culture on CG. That is, the effect of faith in Chinese culture on CG is stronger in the non-peasant group than the peasant group. The results broaden the knowledge of spousal bereavement in a Chinese context. Services such as death education and occupational therapy were recommended according to this study.
Le narrateur vient de perdre sa mère. Il cherche à conjurer la mort. Beur, enfant de la République, il part à la rencontre de deux figures du passé : le Ghassanide, poète contrarié devenu chef des armées du calife Abd el-Malek, et Maysara, fils d'un porteur d'eau berbère, qui, rebelle dans l'âme, a levé une armée et s'est autoproclamé calife. Quand le roman se referme, le deuil est surmonté. Le narrateur a réussi à réconcilier les trois cultures dont il est issu.
[Extrait 4ème de couv.]