OBJECTIVE: Knowledge about how people make meaning in cancer, palliative, and end-of-life care is particularly lacking in Africa, yet it can provide insights into strategies for improving palliative care (PC). This study explored ways in which cancer patients, their families, and health care professionals (HCPs) construct meaning of their life-limiting illnesses and how this impact on provision and use of PC in a Nigerian hospital.
METHODS: This ethnographic study utilised participant observation, informal conversations during observation, and interviews to gather data from 39 participants, comprising service users and HCPs in a Nigerian hospital. Data were analysed using Spradley's framework for ethnographic data analysis.
RESULTS: Meaning-making in life-limiting illness was predominantly rooted in belief systems. Most patients and their families, including some HCPs, perceived that cancer was caused by the devil, mystical, or supernatural beings. They professed that these agents manifested in the form of either spiritual attacks or that wicked people in society used either poison or acted as witches/wizards to inflict cancer on someone. These beliefs contributed to either nonacceptance of, or late presentation for, PC by most of patients and their families, while some professionals depended on supernatural powers for divine intervention and tacitly supporting religious practices to achieve healing/cure.
CONCLUSIONS: Findings revealed that cultural and religious world views about life-limiting illnesses were used in decision-making process for PC. This, therefore, provided evidence that could improve the clinicians' cultural competence when providing PC to individuals of African descent, especially Nigerians, both in Nigerian societies and in foreign countries.
Le chat d'Emma tue une mésange. Son ami, Jules Monsieur-Je-sais-tout, lui explique tout ce qu'il faut savoir sur le mystère de la mort dans touts les civilisations, les religions mais aussi les différents rites après la mort et notre condition d'être humain sur terre.
Ce magnifique album sous forme de bande dessinée explique, avec des mots simples et de sympathiques dessins, ce que doivent savoir les enfants sur le mystère de la mort.
Religion and culture play important roles in influencing end-of-life communication among the elderly. However, little is known about end-of-life communication among elderly nursing home residents. A qualitative study involving a sample of 13 elderly residents of a non- government nursing home in the north of Peninsular Malaysia was conducted to investigate residents' attitudes and ideas about their end-of-life preferences. Thematic analysis was performed to identify major themes emerging from the interviews. This study found that elderly residents actively avoided end-of-life communication, but that their cultural and religious beliefs remained of paramount importance. It is hoped that these findings will provide a platform upon which to improve current nursing home care in Malaysia.
This study examines the impact of the level of religious observance on the attitudes toward end-of-life (EOL) decisions and euthanasia of Jews in Israel-where euthanasia is illegal-as compared to Jews living in the USA, in the states where euthanasia is legal. A self-reporting questionnaire on religiosity and personal beliefs and attitudes regarding EOL care and euthanasia was distributed, using a convenience sample of 271 participants from Israel and the USA. Findings show that significant differences were found in attitudes between Jews of different levels of religious observance with respect to patient autonomy, right to die with dignity, and dying in familiar and supportive surroundings. The USA and Israeli Jews have similar knowledge regarding EOL care and expressed similar attitudes and perceptions toward the issues of authority of medical staff and religious figures and patient's autonomy. Findings indicate that the level of religious observance has more potency in shaping their attitudes and perceptions of EOL decisions than the state law. We conclude by discussing the implications of our findings with regard to multicultural health systems and providing practical recommendations.
BACKGROUND: When religious and spiritual (R/S) care needs of patients with advanced disease are met, their quality of life (QoL) improves. We studied the association between R/S support and cancer patients' QoL at end-of-life in Soweto, South Africa.
OBJECTIVES: To identify R/S needs among advanced cancer patients receiving palliative care services and to assess associations of receipt of R/S care with patient QoL and place of death.
METHOD: A prospective cohort study conducted from May 1, 2016 to April 30, 2018 at a tertiary hospital in Soweto, South Africa. Nurses enrolled advanced cancer patients and referred them to the palliative care multidisciplinary team. Spiritual counsellors assessed and provided spiritual care to patients. We compared socio-demographic, clinical, and R/S factors and QoL of R/S care recipients and others.
RESULTS: Of 233 deceased participants, 92 (39.5%) had received R/S care. Patients who received R/S care reported less pain (2.82±1.23 versus 1.93±1.69), used less morphine and were more likely to die at home than patients who did not (57.5% compared to 33.7%). On multivariable logistic regression analysis, adjusting for significant confounding influences and baseline African Palliative Care Association Palliative Outcome Scale (APCA POS) scores, receipt of spiritual care was associated with reduced pain and family worry (OR, 0.33, 95% CI, 0.11-0.95); (OR, 3.43, 95% CI, 1.10-10.70).
CONCLUSION: Cancer patients have R/S needs. R/S care among our patients appreared to improve their end-of-life experience. More research is needed to determine the mechanisms by which R/S care may have improved the observed patient outcomes.
BACKGROUND: News of cancer progression is critical to setting accurate prognostic understanding, which guides patients' treatment decision making. This study examines whether religious belief in miracles modifies the effect of receiving news of cancer progression on change in prognostic understanding.
METHODS: In a multisite, prospective cohort study, 158 patients with advanced cancer, whom oncologists expected to die within 6 months, were assessed before and after the visit at which scan results were discussed. Before the visit, religious belief in miracles was assessed; after the visit, patients indicated what scan results they had received (cancer was worse vs cancer was stable, better, or other). Before and after the visit, prognostic understanding was assessed, and a change score was computed.
RESULTS: Approximately 78% of the participants (n = 123) reported at least some belief in miracles, with almost half (n = 73) endorsing the strongest possible belief. A significant interaction effect emerged between receiving news of cancer progression and belief in miracles in predicting change in prognostic understanding (b = -0.18, P = .04). Receiving news of cancer progression was associated with improvement in the accuracy of prognostic understanding among patients with weak belief in miracles (b = 0.67, P = .007); however, among patients with moderate to strong belief in miracles, news of cancer progression was unrelated to change in prognostic understanding (b = 0.08, P = .64).
CONCLUSIONS: Religious belief in miracles was highly prevalent and diminished the impact of receiving news of cancer progression on prognostic understanding. Assessing patients' beliefs in miracles may help to optimize the effectiveness of "bad news" scan result discussions.
The descriptive study was conducted to investigate the knowledge, opinions, behaviors of senior nursing students regarding euthanasia and factors in Islam influencing these. Almost all students (97.7%) knew about euthanasia. Their knowledge, opinions and behaviors were affected by their beliefs about death, religious beliefs and the idea of being subject to euthanasia themselves. Religion influenced whether they wanted euthanasia to be legalized or would carry it out secretly. Students who would be willing for their relatives to undergo euthanasia would not want to participate in this. Knowledge about the concept of euthanasia should be increased and the subject further investigated in many dimensions.
Spirituality and religion are at the core of Kenyan life. Pastoral leaders play a key role in shaping the individual and community's response to living with chronic and life-threatening illnesses. Involvement of religious leaders would therefore be critical in advocacy and education efforts in palliative care (PC) to address the needs of this population. The goal of this study was to evaluate the knowledge and perceptions of religious leaders in Western Kenya regarding PC. This was a mixed-methods study with 86 religious leaders utilizing a 25-question survey followed by 5-person focus group discussions. Eighty-one percent of participants agreed that pastors should encourage members with life-threatening illnesses to talk about death and dying. However, almost a third of participants (29%) also agreed with the statement that full use of PC can hasten death. The pastors underscored challenges in end-of-life spiritual preparation as well as the importance of traditional beliefs in shaping cultural norms. Pastors supported the need for community-based PC education and additional training in PC for religious leaders. The results of this study confirm the dominant role of religion and spirituality in PC in Kenya. This dominant role in shaping PC is tied closely to Kenyan attitudes and norms surrounding death and dying.
BACKGROUND: Spiritual support should be offered to all patients and their families regardless of their affiliated status with an organized religion.
AIM: To understand nonreligious theistic parents' spirituality and to explore how parents discuss death with their terminally ill children in mainland China.
DESIGN: Qualitative study.
SETTING/PARTICIPANTS: This study was conducted in the hematology oncology center at Beijing Children's Hospital. Participants in this study included 16 bereaved parents.
RESULTS: Participants described themselves as nonreligious but showed a tendency toward a particular religion. Parents sought religious support in the face of the life-threatening conditions that affected their child and regarded the religious belief as an important way to get psychological and spiritual comfort after experiencing the death of their child. Religious support could partially address parents' spiritual needs. Parents' spiritual needs still require other supports such as bereavement services, death education, and family support groups. Some parents stated that it was difficult to find a way to discuss death with their children. For patients who come from nonreligious theistic families, their understanding of death was more complex and may be related to atheism.
CONCLUSION: Religious support could be an element of spiritual support for nonreligious theistic parents of terminally ill children. Multiple strategies including religious supports and nonreligious supports should be rationally integrated into spiritual support of nonreligious theistic family. Patient's personal belief in death should be assessed before discussing death with them.
Background: Medical Assistance in Dying (MAID) in Canada came into effect in 2016 with the passing of Bill C-14. As patient interest and requests for MAID continue to evolve in Canada, it is important to understand the attitudes of future providers and the factors that may influence their participation. Attitudes towards physician hastened death (PHD) in general and the specific provision of MAID (e.g., causing death by lethal prescription or injection) are unknown among Canadian residents. This study examined residents’ attitudes towards PHD and MAID, and identified factors (e.g., demographics, clinical exposure to death and dying) that may influence their decision to participate in PHD and provide MAID.
Methods: A cross-sectional survey was adapted from prior established surveys on MAID to reflect the Canadian setting. All Canadian family medicine programs were invited to participate. The survey was distributed between December 2016 and April 2017. Analysis of the results included descriptive statistics to characterize the survey participants and multivariable logistic regressions to identify factors that may influence residents’ attitudes towards PHD and MAID.
Results: Overall, 247 residents from 6 family medicine training programs in Canada participated (response rate of 27%). While residents were most willing to participate in treatment withdrawal (52%), active participation in PHD (41%) and MAID by prescription of a lethal drug (31%) and lethal injection (24%) were less acceptable. Logistic regressions identified religion as a consistent and significant factor impacting residents’ willingness to participate in PHD and MAID. Residents who were not strictly practicing a religion were more likely to be willing to participate in PHD (OR = 17.38, p < 0.001) and MAID (lethal drug OR = 10.55, p < 0.01, lethal injection OR = 8.54, p < 0.05). Increased clinical exposure to death and dying crudely correlated with increased willingness to participate in PHD and MAID, but when examined in multivariable models, only a few activities (e.g., declaring death, completing a death certificate) had a statistically significant association. Other significant factors included the residents’ sex and location of training.
Conclusions: Residents are hesitant to provide MAID themselves, with religious faith being a major factor impacting their decision.
This study examines the prevalence of religiosity, death anxiety, and hope in a sample of New Zealand community hospice patients in the last 6 months of life. It explores the factors triggering distress or hope and examines whether religiosity is protective against death anxiety for this population. Early studies showed religious faith helps relieve death anxiety, but later work suggests this may only be the case in societies which are generally religious. Very little research has been conducted on this topic in New Zealand, from which recent censuses indicate is an increasingly secular country. If religion is not an important source of hope for dying, it is important to explore what factors do help relieve existential anxiety and to consider their clinical relevance. This study confirmed that organized religion was not a major support factor. Yet several people who declared themselves nonreligious scored highly for intrinsic religiosity and were among the most hopeful participants. This could suggest that spirituality may be more relevant than organized religion in relieving existential distress. The main source of hope for most participants was joyful memories and meaningful relationships. Fear of being a burden and of causing family suffering were the most significant causes of distress. Systematic spiritual assessment for all patients, not just those with a declared religious faith, a biography service, and psychotherapy, may all have a role in managing death anxiety at the end of life. Further work with larger and more diverse populations would be needed to confirm these findings.
The aim of this cross-sectional study was to investigate attitudes of New Zealanders toward death and dying. We administered an online version of Collett–Lester Fear of Death Scale and Concerns about Dying Instrument subscales to a representative sample of the New Zealand population. One thousand one people responded to the survey, where the largest age-group lay between 30 and 39 years. Respondents with strong religious beliefs showed strongest agreement to being anxious about their own death compared to those who have no religious beliefs (p = .0005). Conversely, participants with strong spiritual beliefs did not feel anxious about dying (=.0005). Participants with strong family connections believed their religion/spirituality helped them think about death compared to those with weak family connections (p > .0001). Our findings show that strong religious beliefs significantly predict higher levels of death anxiety compared to participants with strong spiritual beliefs. This is probably due to the cultural identity of those sampled.
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.
Healthcare services are often out of sync with cultural, spiritual and religious perspectives on health, death, and grieving. This dissonance affects attitudes and behaviours in seeking and utilizing end-of-life health services and can lead to poor clinical communication, misunderstanding, and anxiety as patients, families and health providers interact during a serious illness. To address a gap in cultural-specific information Canadian Virtual Hospice launched LivingMyCulture.ca-an evidence-informed collection of videos of immigrants, refugees, and Indigenous people sharing their stories about the intersection of culture, spirituality, and religion with their experiences of advanced illness, palliative care, and grief. The video repository includes over 650 video clips, available in 11 different languages. These narratives empower and educate patients and their families by raising their awareness about accessing, advocating, and receiving culturally safe and inclusive care as they navigate the Canadian healthcare system. LivingMyCulture.ca also promotes culturally sensitive care among health providers to enhance their knowledge and skills in providing culturally safe and inclusive care in order to improve care outcomes. This presentation will introduce LivingMyCulture.ca, provide strategies for incorporating the tool into practice to support patient and family care and share summative evaluation results. A Somali-Canadian journalist and community leader will share her unique Muslim and Somali perspective about the way illness, dying and grief is approached and the impact of LivingMyCulture.ca in the community. Overviews of other culture groups' video resources will also be shared, reflecting Canada's rich cultural tapestry. This workshop will provide an overview of LivingMyCulture.ca, share video clips from the 11 cultures in the series and include a discussion with a Somali-Canadian journalist and community leader about the way people in her culture approach illness, dying and grief and the overall impact of LivingMyCulture.ca.
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.
This study investigated the importance of religious and spiritual beliefs in daily life in explaining prolonged grief disorder (PGD) symptomatology. Participants were 588 bereaved adults who completed a questionnaire. The importance of spiritual beliefs in daily life explained a small to medium, significant 3% of variance in PGD symptoms, but religious beliefs in daily life did not. Individuals who placed moderate importance on spiritual beliefs in their daily life may experience more intense grief.
The bioethical, professional, and policy discourse over brain death criteria has been portrayed by some scholars as illustrative of the minimal influence of religious perspectives in bioethics. Three questions then lie at the core of my inquiry: What interests of secular pluralistic societies and the medical profession are advanced in examining religious understandings of criteria for determining death? Can bioethical and professional engagement with religious interpretations of death present substantive insights for policy discussions on neurological criteria for death? And finally, how extensive should the scope of policy accommodations be for deeply held religiously based dissent from neurological criteria for death? I begin with a short synopsis of a recent case litigated in Ontario, Canada, Ouanounou v. Humber River Hospital, to illuminate this contested moral terrain.
BACKGROUND: Spiritual care is integral to palliative care. It engenders a sense of purpose, meaning, and connectedness to the sacred or important and may support caregiver well-being.
AIM: To examine caregivers' spirituality, religiosity, spiritual well-being, and views on spiritual/religious support.
DESIGN: A mixed-methods study across 4 Australian sites, recruiting caregivers of patients with a life expectancy of under 12 months. The anonymous semistructured questionnaire used included research team developed and adapted questions examining religion/spirituality's role and support and views on hospitals supporting spiritual/religious requirements. It additionally included the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale (FACIT-Sp-12).
RESULTS: One hundred nine caregivers participated (47.4% responded). Median spiritual well-being was 30.5 on FACIT-Sp-12. Religious affiliation was associated with higher Faith subscores (P < .001). Spirituality was very important to 24.5%, religiosity to 28.2%, and unimportant to 31.4% and 35.9%, respectively. Caregivers prayed (P = .005) and meditated (P = .006) more following patients' diagnoses, gaining comfort, guidance, and strength. Caregivers whose spiritual/religious needs were met to moderate/full extent by external religious/faith communities (23.8%) reported greater spiritual well-being (P < .001). Hospitals supported moderate/full caregiver spiritual needs in 19.3%. Pastoral care visits comforted 84.4% of those who received them (n = 32) but elicited discomfort in 15.6%. Caregivers also emphasized the importance of humane staff and organizational tone in supporting spiritual care.
CONCLUSIONS: Hospital-based spiritual care providers should seek to identify those who seek pastoral or religiously orientated care. Genuine hospitality of showing concern for the other ensures the varied yet inevitably humanist requirements of the caregiver community are met.