https://www.infirmiere-canadienne.com/blogs/ic-contenu/2024/03/04/cinq-questions-fin-de-vie
Customary rituals can bring much-needed comfort to the dying person and their family
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When the end of life approaches, cultural customs are extremely important. Distinct rituals, activities, and behaviours are often carried out over the dying and bereavement trajectory. These rituals are comforting not only to the dying person but also to their family.
Many developed countries are receiving a growing number of immigrants now, Canada included. The 2021 census revealed that 23% of Canadian citizens were born in another country, with this proportion expected to become 1 in 3 soon (Statistics Canada, 2022). People who immigrate often arrive as adults and typically stay in their adopted country for the rest of their lives. Although immigrants settle into their new country, they tend to retain social customs from home (Liu et al., 2022).
When the end of life (EOL) approaches, cultural customs are extremely important. Distinct rituals, activities, and behaviours are often carried out over the dying and bereavement trajectory. These rituals are comforting not only to the dying person but also to their family. They provide a guidebook at a time when people need to know what will happen or what should happen (Liu et al., 2022).
‘Good death’ facilitates grief
We know that a “good death” is extremely important for the dying person, but it is also very important for their family. Some palliative research has found that grieving is longer and harder when the family thinks their loved one did not have a good death (Wilson et al., 2019). Culturally appropriate or inappropriate EOL care may be a key factor for the grief that follows a death.
We carried out a major literature review of published and unpublished information to learn about the EOL customs among 10 of the most common new immigrant groups in Canada. These groups are from African and Asian countries, specifically the Philippines, India, China/Hong Kong, Pakistan, Vietnam, Mexico, Korea, Nigeria, Ethiopia and Lebanon. For this project, we learned for each of those 10 immigrant groups what they would expect to happen and also not happen at three distinct times: (1) as death nears, (2) at the time of death, and (3) in the immediate post-death phase, when the body needs to be managed and other activities are required despite acute family grieving.
After our scoping literature review, where all identified research and non-research literature findings were examined for information, we summarized the findings for each cultural group and then reviewed these findings with cultural leaders in Canada to verify or correct the findings, and to gain additional insights on culturallyspecific EOL customs.
What we learned is that EOL customs vary greatly across the 10 cultural groups. What is normal to one group may be unimportant or perhaps inappropriate to another group. For instance, there is a preference to utilize aggressive life-sustaining treatments and remain on life support until death among adults who arrived from China/Hong Kong and Vietnam (Duke, 2013; Reese, Chan, Chan, & Wiersgalla, 2010). Alternatively, people from Korea, India and Pakistan will often want to have all life supports removed when death is imminent and stop life-sustaining measures in irreversible illnesses out of concern that these prolong suffering (Ivo et al., 2012; Stanford Medicine, 2019).
We also learned, through talking with the cultural leaders about our findings, that social customs change over time. What used to be a social custom in a home country may no longer be present in that country, yet the dying person or their family in Canada can still hold to the old custom. For instance, home deaths were not acceptable years ago in China as death was a taboo subject, but now they are common (Cai, Zhao, & Coyte, 2017). Alternatively, immigrants and their first- or second-generation family members may accept their adopted country’s social customs as they settle in and use what is practical or possible in the new country.
Families must be involved
Creating a chart of specific do and don’t practices for formal caregivers to use so that they can know specific EOL customs for each cultural group is therefore not possible. However, one practice that is extremely important across all groups is that family members want to be present and directly involved in EOL care and decision-making, regardless of where this care takes place.
What is also important to know is that some culturally based EOL customs will be very different from what is “normal” to a nurse, physician, social worker or another care provider in Canada, most of whom were born in Canada and so are accustomed to a certain way of doing things. These commonly practised ways are often considered “right” in ethical or moral terms. In Canada, only 8.9% of regulated nurses in 2021 were internationally educated (Government of Canada, 2021).
We hope that nurses and other formal care providers become aware of the importance of culturally based EOL expectations. All care providers need to anticipate differences in expectations across families and be open to culturally based EOL requests.
5 questions that health-care providers should ask
As it would be very difficult to know exactly what to do for each cultural group, and for each dying person and their family, we advise asking an approachable family member five questions (in this order and perhaps also over time as a terminal illness progresses):
- Is it okay if I ask you some questions about your family’s EOL customs? Reason: Our review found that some cultural groups do not want to know that a death is imminent. Permission is therefore needed to talk openly about EOL planning. Moreover, some cultural groups expect that only certain people in the family will be included in these major discussions. As such, it is also important to determine who is the right person (or right people) to talk to.
- Where was your family member born? Reason: Where a person was born is not normally recorded anywhere, yet it is a very important piece of information to help anticipate different cultural expectations about what should happen before death, at the time of death, and soon after the death.
- Are there any cultural expectations about what should happen now in this EOL care period? Reason: Many differences across the cultural groups were identified for this time, when dying is occurring.
- Are there any cultural expectations about what should happen when the death takes place? Reason: Many differences across the cultural groups were identified for activities or rituals that are supposed to occur at the time of death.
- Are there any cultural expectations about what should happen soon after the death takes place, including how the body should be managed? Reason: Many differences across the cultural groups were identified for this period of immediate post-death activities.
These are five important questions designed to gain needed information for informed action by nurses and other formal caregivers. These questions can help provide an avenue for relationship building between nurses and distressed family members. They could help ensure that conflict does not occur as EOL conflict is common (Wilson et al., 2022). These questions can also demonstrate that nurses care and are committed to providing culturally appropriate care.
This project was made possible by a grant from the Northern Alberta Academic Family Medicine Fund (June 21, 2021).
References
Cai, J., Zhao, H., & Coyte, P. C. (2017). Socioeconomic differences and trends in the place of death among elderly people in China. International Journal of Environmental Research and Public Health, 14(10), 1210. doi:10.3390/ijerph14101210
Duke, G. (2013). Attitudes regarding life-sustaining measures in people born in Japan, China, and Vietnam and living in Texas. International Journal of Palliative Nursing, 19(2), 76–83. doi:10.12968/ijpn.2013.19.2.76
Government of Canada. (2021, May 12). Government of Canada helps internationally trained nurses get their foreign credentials recognized and find quality jobs. Retrieved from https://www.newswire.ca/news-releases/government-of-canada-helps-internationally-trained-nurses-get-their-foreign-credentials-recognized-and-find-quality-jobs-893444179.html
Ivo, K., Younsuck, K., Ho, Y. Y., Sang-Yeon, S., Seog, H. D., Hyunah, B., … Xiaomei, Z. (2012). A survey of the perspectives of patients who are seriously ill regarding end-of-life decisions in some medical institutions of Korea, China and Japan. Journal of Medical Ethics, 38(5), 310–316. doi:10.1136/medethics-2011-100153
Liu, R. W., Lapinski, M. K., Kerr, J. M., Zhao, J., Bum, T., & Lu, Z. (2022). Culture and social norms: Development and application of a model for culturally contextualized communication measurement (MC3M). Frontiers in Communication, 6-2021. doi:10.3389/fcomm.2021.770513
Reese, D. J., Chan, C. L. W., Chan, W. C. H., & Wiersgalla, D. (2010). A cross-national comparison of Hong Kong and U.S. student beliefs and preferences in end-of-life care: Implications for social work education and hospice practice. Journal of Social Work in End-of-Life & Palliative Care, 6(3–4), 205–235. doi:10.1080/15524256.2010.529021
Stanford Medicine. (2019). Advance directives/end-of-life issues. Retrieved from https://geriatrics.stanford.edu/ethnomed/pakistani/delivery/advance_directives.html
Statistics Canada. (2022). Focus on geography series, 2021 census of population: Canada. Retrieved from https://www12.statcan.gc.ca/census-recensement/2021/as-sa/fogs-spg/page.cfm?lang=E&topic=9&dguid=2021A000011124
Wilson, D. M., Bykowski, K. A., Banamwana, G., Bryenton, F. M., Dou, Q., & Errasti-Ibarrondo, B. (2022). Intra-family end-of-life conflict: Findings of a research investigation to identify its incidence, cause, and impact. OMEGA, Journal of Death and Dying, 302228221133504, doi:10.1177/00302228221133504
Wilson, D. M., Cohen, J., Eliason, C., Deliens, L., MacLeod, R., Hewitt, J. A., & Houttekier, D. (2019). Is the bereavement grief intensity of survivors linked with their perception of death quality? International Journal of Palliative Nursing, 25(8), 398–405. doi:10.12968/ijpn.2019.25.8.398
Donna M. Wilson, RN, PhD, is a professor emeritus at the University of Alberta.
Brooklyn A. Grainger, RN, BScN, is working as a nurse in a hospital in Fort Saskatchewan, Alberta.
Jean A. C. Triscott, BED/AD, MD, CCFP(COE), FAAFP, FCFP, is a professor and director of the Division of Care of the Elderly, Department of Family Medicine, Faculty of Medicine and Dentistry, University of Alberta, Edmonton.
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