Hostname: page-component-76fb5796d-wq484 Total loading time: 0 Render date: 2024-04-25T15:10:47.170Z Has data issue: false hasContentIssue false
  • English
  • Français

Cultural and religious considerations in pediatric palliative care

Published online by Cambridge University Press:  22 May 2012

Lori Wiener ,
Denice Grady McConnell ,
Lauren Latella  and
Erica Ludi
Lori Wiener*
Affiliation:
Pediatric Oncology Branch, National Cancer Institute, National Institutes of Health, Bethesda, Maryland
Denice Grady McConnell
Affiliation:
Adams Hanover Counseling Services, Inc., Hanover, Pennsylvania
Lauren Latella
Affiliation:
Pediatric Oncology Branch, National Cancer Institute, National Institutes of Health, Bethesda, Maryland Cornell University, Ithaca, NY
Erica Ludi
Affiliation:
National Institute of Mental Health, National Institutes of Health, Bethesda, Maryland
*
Address correspondence and reprint requests to: Lori Wiener, National Cancer Institute, National Institutes of Health, 10 Center Drive, Pediatric Clinic, 1-6466, Bethesda, MD 20892. E-mail: wienerl@mail.nih.gov
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

A growing multicultural society presents healthcare providers with a difficult task of providing appropriate care for individuals who have different life experiences, beliefs, value systems, religions, languages, and notions of healthcare. This is especially vital when end-of-life care is needed during childhood. There is a dearth of literature addressing cultural considerations in the pediatric palliative care field. As members of a specific culture often do not ascribe to the same religious traditions, the purpose of this article was to explore and review how culture and religion informs and shapes pediatric palliative care.

Method:

Comprehensive literature searches were completed through an online search of nine databases for articles published between 1980 and 2011: PsychINFO, MEDLINE®, Journal of Citation Reports-Science Edition, Embase, Scopus, CINAHL®, Social Sciences Citation Index (SSCI), EBSCO, and Ovid. Key terms included: culture, transcultural, spiritual, international, ethnic, customs or religion AND end-of-life, palliative care, death, dying, cancer, or hospice, and children, pediatrics, or pediatric oncology. Reference lists in the retrieved articles were examined for additional studies that fit the inclusion criteria, and relevant articles were included for review. In addition, web-based searches of specific journals were conducted. These included, but were not limited to: Qualitative Health Research, Psycho-Oncology, Journal of Psychosocial Oncology, Journal of Pediatric Psychology, Journal of Pediatric Health Care, Journal of Pediatric Oncology Nursing, Omega, Social Work in Health Care, and Journal of Palliative Medicine.

Results:

Thirty-seven articles met eligibility criteria. From these, seven distinct themes emerged that have implications for pediatric palliative care. These include the role of culture in decision-making, faith and the involvement of clergy, communication (spoken and unspoken language), communicating to children about death (truth telling), the meaning of pain and suffering, the meaning of death and dying, and location of end-of-life care.

Significance of results:

The review of the literature provides insight into the influence of religion and how culture informs lifestyle and shapes the experiences of illness, pain, and end-of-life care. Recommendations for providing culturally sensitive end-of-life care are offered through the framework outlined in the Initiative for Pediatric Palliative Care Quality Improvement Project of 2002. Cultural traditions are dynamic, never static, and cannot be generalized to all families. Guidelines to aid in approaches to palliative care are provided, and providers are encouraged to define these important differences for each family under their care.

Keywords

CulturePediatric palliative careReligionSpiritualityChildrenEthnicity
Type
Original Articles
Information
Palliative & Supportive Care , Volume 11 , Issue 1 , February 2013 , pp. 47 - 67
Copyright
Copyright © Cambridge University Press 2012

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

Abbe, M., Simon, C., Angiolillo, A., et al. (2006). A survey of language barriers from the perspective of pediatric oncologists, interpreters, and parents. Pediatric Blood & Cancer, 47, 819–824.CrossRefGoogle ScholarPubMed
al-Jawziyyah, I.Q. (1997). Patience at the time of bereavement. In Patience and Gratitude: An Abridged Translation of ‘Uddat As-Sābirīn Wa Dhākhirat Ash-shākirīn. 57–60. al-Khattab, N. (ed.), London: Taha Publishers.Google Scholar
Anderson, K.C., Mendoza, T.R., Valero, V., et al. (2000). Minority cancer patients and their providers – Pain management attitudes and practice. Cancer, 88, 1929–1938.3.0.CO;2-2>CrossRefGoogle ScholarPubMed
Andrews, M.M. & Boyle, J.S. (2003). Transcultural Concepts in Nursing Care. Philadelphia: Lippincott Williams & Wilkins.Google Scholar
Anghelescu, D.L., Oakes, L. & Hinds, P.S. (2006). Palliative care and pediatrics. Anesthesiology Clinics, 24, 145–161.Google Scholar
Baker, M.E. (2002). Economic, political and ethnic influences on end-of-life decision-making: A decade in review. Journal of Health and Social Policy, 14, 27–39.CrossRefGoogle ScholarPubMed
Benini, F., Spizzichino, M., Trapanotto, M., et al. (2008). Pediatric palliative care. Italian Journal of Pediatrics, 34, 4.Google Scholar
Braun, K. & Nichols, R. (1997). Death and dying in four Asian American cultures: A descriptive study. Death Studies, 21, 327–359.Google Scholar
Brolley, G., Tu, A. & Wong, E. (2007). Culture Clues: Communicating with your Chinese Patient: Patient and Family Education Services at the University of Washington Medical Center. http://depts.washington.edu/pfes/CultureClues.htm.Google Scholar
Burhansstipanov, L. & Hollow, W. (2001). Native American cultural aspects of nursing oncology care. Seminars in Oncology Nursing, 17, 206–219.Google Scholar
Campbell, A. (2006). Spiritual care for sick children of five world faiths. Paediatric Nursing, 18, 22–25.Google Scholar
Cardenas, D., Garces, C., Johnson, D., et al. (2007). End of Life Care: The Latino Culture: Patient and Family Education Services at the University of Washington Medical Center. http://depts.washington.edu/pfes/CultureClues.htm.Google Scholar
Chaturvedi, S.K. (2008). Ethical dilemmas in palliative care in traditional developing societies, with special reference to the Indian setting. Journal of Medical Ethics, 34, 611–615.CrossRefGoogle Scholar
Chen, L.M., Miaskowski, C., Dodd, M., et al. (2008). Concepts within the Chinese culture that influence the cancer pain experience. Cancer Nursing, 31, 103–108.CrossRefGoogle ScholarPubMed
Contro, N., Larson, J., Scofield, S., et al. (2002). Family perspectives on the quality of pediatric palliative care. Archives of Pediatric Adolescent Medicine, 156, 14–19.CrossRefGoogle ScholarPubMed
Contro, N., Davies, B., Larson, J., Sourkes, B. (2010). Away from home: experiences of Mexican American families in pediatric palliative care. Journal of Social Work in End-of-Life & Palliative Care, 6, 185–204.CrossRefGoogle ScholarPubMed
Crawley, L.M., Marshall, P.A., Lo, B., et al. (2002). Strategies for culturally effective end-of-life care. Annals of Internal Medicine, 136, 673–679.Google Scholar
Crom, D.B. (1995). The experience of South American mothers who have a child being treated for malignancy in the United States. Journal of Pediatric Oncology Nursing, 12, 104–112.Google Scholar
Davidhizar, R. & Bartlett, D. (2000). Helping your patients control their pain. ABNF Journal, 11, 13–17.Google Scholar
Davidhizar, R. & Giger, J.N. (2004). A review of the literature on care of clients in pain who are culturally diverse. International Nursing Review, 51, 47–55.Google Scholar
Davies, B., Sehring, S.A., Partridge, J.C., et al. (2008). Barriers to palliative care for children: Perceptions of pediatric health care providers. Pediatrics, 121, 282–288.Google Scholar
Dell, M.L. (2009). Spiritual and religious considerations for the practicing pediatric oncologist. In Quick Reference for Pediatric Oncology Clinicians: The Psychiatric and Psychological Dimensions of Pediatric Cancer Symptom Management. Wiener, L., Pao, M., Kazak, A.E., et al. (eds.), pp. 268–272, Charlottsville, VA: American Psychosocial Oncology Society.Google Scholar
DeTrill, M. & Kovalcik, R. (1997). The child with cancer. Influence of culture on truth-telling and patient care. Annals of New York Academy Sciences, 20, 197–210.Google Scholar
Dhingra, L. (2008). Pain in ethnic Chinese cancer patients: Role of cultural factors in assessment and treatment. The Pain Practitioner, 18, 28–34.Google Scholar
Diversicare. (2009) Philippine cultural information. http://www.diversicare.com.au/upl_files/file_153.pdfGoogle Scholar
Dubov, N.D. (1995) An Overview of Techiyas Hameisim Based on the Teachings of Chabad Chassidism. http://www.chabad.orgGoogle Scholar
Elwyn, T.S., Fetters, M.D., Gorenflo, D.W., et al. (1998). Cancer disclosure in Japan: Historical comparisons, current practices. Social Science and Medicine, 46, 1151–1163.Google Scholar
Fernandez Olmos, M. & Paravisini–Gebert, L. (2003). Creole Religions of the Carribean: An Introduction from Vodou and Santeria to Obeah and Espiritismo (Religion, Race, and Ethnicity). New York: New York University Press.Google Scholar
Field, M.J. & Behrman, R.E. (2003). When Children Die: Improving Palliative and End–of-Life Care for Children and Their Families. Washington, DC: National Academies Press.Google Scholar
Flood, G. (2003). The Blackwell Companion to Hinduism. Malden, MA: Blackwell Publishing.Google Scholar
Flores, G. & Vega, L.R. (1998). Barriers to health care access for Latino children: A review. Family Medicine, 30, 196–205.Google Scholar
Flores, G., Abreu, M., Olivar, M.A. et al. (1998). Access barriers to health care for Latino children. Archives of Pediatrics & Adolescent Medicine, 152, 1119–1125.Google Scholar
Flores, G., Abreu, M., Schwartz, I. et al. (2000). The importance of language and culture in pediatric care: Case studies from the Latino community. Journal of Pediatrics, 137, 842–848.Google Scholar
General Conference of Seventh-Day Adventists. (1992). A Statement of Consensus on Care for the Dying. Adventist.org: The Official Site of the Seventh-Day Adventist World Church. http://www.adventist.org/beliefs/statements/main-stat6.htmlGoogle Scholar
Giger, J.N. & Davidhizar, R.E. (2004). Transcultural Nursing: Assessment and Intervention. St Louis: Mosby.Google Scholar
Gilmer, M.J. (2002). Pediatric palliative care: A family-centered model for critical care. Critical Care Nursing Clinics of North America, 14, 207–214.Google Scholar
Greiner, K.A., Perera, S. & Ahluwalia, J.S. (2003). Hospice usage by minorities in the last year of life: Results from the national mortality followback survey. Journal of the American Geriatrics Society, 51, 970–978.Google Scholar
Gunnarsdottir, S., Donovan, H.S., Serlin, R.C., et al. (2002). Patient-Related Barriers to Pain Management: The Barriers Questionnaire II (BQ-II). Pain, 99, 385–396.Google Scholar
Gupta, V.B., Willert, J., Pian, M., et al. (2010). When disclosing a serious diagnosis to a minor conflicts with family values. Journal of Developmental and Behavioral Pediatrics, 31, S100–S102.Google Scholar
Hardy, D., Chan, W., Liu, C.C., et al. (2011). Racial disparities in the use of hospice services according to geographic residence and socioeconomic status in an elderly cohort with nonsmall cell lung cancer. Cancer, 117, 1506–1515.CrossRefGoogle Scholar
Hatano, Y., Yamada, M. & Fukui, K. (2011). Shades of truth: Cultural and psychological factors affecting communication in pediatric palliative care. Journal of Pain and Symptom Management, 41, 491–495.Google Scholar
Himelstein, B.P., Hilden, J.M., Boldt, A.M., et al. (2004). Medical progress – Pediatric palliative care. New England Journal of Medicine, 350, 1752–1762.CrossRefGoogle Scholar
Institute of Medicine. (2001). Crossing the Quality Chasm: A New Health System for the 21st Century. National Academies of Science. Washington DC: National Academies Press.Google Scholar
Institute of Medicine. (2011). Cultural Transformation of Attitudes Toward Pain and Its Prevention and Management. National Academies of Science. Washington DC: National Academies Press.Google Scholar
Jacob, E., McCarthy, K.S., Sambuco, G., et al. (2008). Intensity, location, and quality of pain in Spanish-speaking children with cancer. Pediatric Nursing, 34, 45–52.Google Scholar
Johnson, C.J. & McGee, M. (1998). How Different Religions View Death and Afterlife. Philadelphia: The Charles Press.Google Scholar
Kato, Y., Yano, I., Ito, F., et al. (2004). Home-based palliative care for children with cancer in Japan, present issues and future prospects. Pediatrics International, 46, 478–479.CrossRefGoogle ScholarPubMed
Kemp, C. & Rasbridge, L. (2004). Cultural traditions and populations: Philippines. In Refugee and Immigrant Health: A Handbook for Health Professionals. Cambridge, U.K.: Cambridge University Press.Google Scholar
Kemp, J. (2005). Cultural issues in palliative care. Seminars in Oncology Nursing, 21, 44–52.CrossRefGoogle ScholarPubMed
Kitzes, J. & Berger, L. (2004). End-of-life issues for American Indians/Alaska Natives: Insights from one Indian Health Service area. Journal of Palliative Medicine, 7, 830–838.Google Scholar
Kobler, K., Limbo, R. & Kavanaugh, K. (2007). Meaningful moments: The use of ritual in perinatal and pediatric death. American Journal of Maternal–Child Nursing, 32, 288–295.Google Scholar
Koenig, B.A. & Davies, E. (2002). Cultural dimensions of care at life's end for children and their families. In When Children Die: Improving Pallaitive and End-of-Life Care for Children and Their Families. Field, M.J. & Behrman, R.E. (eds.), pp. 509–552. Washington, DC: National Academy Press.Google Scholar
Kongnetiman, L., Lai, B. & Berg, B. (2008). Cultural Competency in Paediatric Palliative Care: A Literature Review. Cultural Competency in Palliative Care Research Report. Alberta: Alberta Health Services.Google Scholar
Kumagai, A.K. & Lypson, M.L. (2009). Beyond cultural competence: Critical consciousness, social justice, and multicultural education. Academic Medicine, 84, 782–787.CrossRefGoogle ScholarPubMed
Lamm, M. (1969). The Jewish Way in Death and Mourning. New York: Jonathan David Publishers.Google Scholar
Laungani, P. (1996). Death and bereavement in India and England. A comparative analysis, Mortality, 1, 191–212.Google Scholar
Lee, S., Phan, L. & Tran, J. (2007). End of Life Care: The Vietnamese Culture: Patient and Family Educational Services at the University of Washington Medical Center. http://depts.washington.edu/pfes/CultureClues.htm.Google Scholar
Levetown, M. (1998). Palliative care in the intensive care unit. New Horizons–the Science and Practice of Acute Medicine, 6, 383–397.Google Scholar
Lipson, J.G., Dibble, S.L. & Minarik, P.A. (1997). Culture and Nursing Care: A Pocket Guide. San Francisco:UCSF Nursing Press.Google Scholar
Lobar, S.L., Youngblut, J.M. & Brooten, D. (2006). Cross-cultural beliefs, ceremonies, and rituals surrounding death of a loved one. Pediatric Nursing, 32, 44–50.Google Scholar
Liu, J.M., Lin, W.C., Chen, Y.M., et al. (1999). The status of the do-not-recessitate order in Chinese clinical trial patients in a cancer centre. Journal of Medical Ethics, 25, 309–314.CrossRefGoogle Scholar
Ljungman, G., Kreuger, A., Gordh, T., et al. (2006). Pain in pediatric oncology: Do the experiences of children and parents differ from those of nurses and physicians? Upsala Journal of Medical Sciences, 111, 87–95.CrossRefGoogle ScholarPubMed
Long, S.O. (2004) Cultural scripts for a good death in Japan and the United States: Similarities and differences. Social Science & Medicine, 58, 913–928.CrossRefGoogle ScholarPubMed
Lyke, J. & Colon, M. (2004). Practical recommendations for ethnically and racially sensitive hospice services. American Journal of Hospice and Palliative Care, 21, 131–133.Google Scholar
Mack, J.W. & Wolfe, J. (2006). Early integration of pediatric palliative care: For some children, palliative care starts at diagnosis. Current Opinion in Pediatrics, 18, 10–14.Google Scholar
Matthews, R.A., Del Priore, R.E., Acitelli, L.K., et al. (2006). Work-to-relationship conflict: Crossover effects in dual-earner couples. Journal of Occupational Health Psychology, 11, 228–240.Google Scholar
Mazanec, P. & Tyler, M.K. (2003). Cultural considerations in end-of-life care—How ethnicity, age, and spirituality affect decisions when death is imminent. American Journal of Nursing, 103, 50–58.CrossRefGoogle ScholarPubMed
Meyer, E.C., Ritholz, M.D., Burns, J.P., et al. (2006). Improving the quality of end-of-life care in the pediatric intensive care unit: Parents' priorities and recommendations. Pediatrics, 117, 649–657.Google Scholar
Milshteyn, Y. & Petrov, O. (2007). End of Life Care: The Russian Culture: Patient and Family Education Services at the University of Washington Medical Center. http://depts.washington.edu/pfes/CultureClues.htmGoogle Scholar
Minarik, P. (1996). Culture & Nursing Care: A Pocket Guide. San Francisco, CA: University of California San Francisco Nursing Press.Google Scholar
Mitchem, S. (2007). African American Folk Healing. New York: New York University Press.Google Scholar
Moazam, F. (2000). Families, patients, and physicians in medical decision making: A Pakistani perspective. Hastings Center Report, 30, 28–37.Google Scholar
Moody, K., Siegel, L., Scharbach, K., et al. (2011). Pediatric palliative care. Primary Care, 38, 327–361.Google Scholar
Morrison, R.S., Zayas, L.H., Mulvihill, M., et al. (1998). Barriers to completion of healthcare proxy forms: A qualitative analysis of ethnic differences. Journal of Clinical Ethics, 9, 118–126.Google Scholar
Munet-Vilaro, F. (2004). Delivery of culturally competent care to children with cancer and their families—The Latino experience. Journal of Pediatric Oncology Nursing, 21, 155–159.Google Scholar
Murphy, S.T., Blackhall, L.J., Michel, V., et al. (1995). Ethnicity and attitudes toward patient autonomy. JAMA, 274, 820–825.Google Scholar
Namboze, J.M. (1983). Health and culture in an African society. Social Science and Medicine, 17, 2041–2043.Google Scholar
Olsen, P., Taualii, M., Eteni, L., et al. (2007). Culture Clues: Communicating with your American Indian/Alaska Native Patient: Patient and Family Education Services at the University of Washington Medical Center. http://depts.washington.edu/pfes/CultureClues.htmGoogle Scholar
Orona, C.J., Koenig, B.A. & Davis, A.J. (1994). Cutlural aspects of non disclosure. Cambridge Quarterly of Healthcare Ethics, 3, 338–346.CrossRefGoogle Scholar
Owens, A. & Randhawa, G. (2004). ‘;It's different from my culture; they're very different': Providing community-based, ‘culturally competent' palliative care for South Asian people in the UK. Health and Social Care in the Community, 12, 414–421.Google Scholar
Payne, S., Chapman, A., Holloway, M., et al. (2005). Chinese community views: Promoting cultural competence in palliative care. Journal of Palliative Care, 21, 111–116.CrossRefGoogle ScholarPubMed
Periyakoil, V., Mendez, J. & Buttar, A. (2011). Health and Health care for Pakistani American elders. http://www.stanford.edu/group/ethnoger/pakistani.html.Google Scholar
Perkins, H.S., Geppert, C.M.A., Gonzales, A., et al. (2002). Cross-cultural similarities and differences in attitudes about advance care planning. Journal of General Internal Medicine, 17, 48–57.Google Scholar
Phan, L. & Tran, J. (2007). Culture Clues: Communicating with your Vietnamese Patient: Patient and Family Education Services at the University of Washington Medical Center. http://depts.washington.edu/pfes/CultureClues.htm.Google Scholar
Pierce, B. (2007). The use of biofield therapies in cancer care. The Clinical Journal of Oncology Nursing, 11, 253–258.Google Scholar
Post, L.F., Blustein, J., Gordon, E., et al. (1996). Pain: Ethic, culture, and informed consent to relief. Journal of Law, Medicine & Ethics, 24, 348–359.CrossRefGoogle ScholarPubMed
Puchalski, C.M., Dorff, R.E., Hendi, Y. (2004). Religion, spirituality, and healing in palliative care. Clinics in Geriatric Medicine, 20, 689–714.Google Scholar
Randhawa, G., Owens, C., Alastair, A., et al. (2003). Communication in the development of culturally competent palliative care services in the UK: A case study. International Journal of Palliative Nursing, 9, 24–31.Google Scholar
Sandoval, C. (2003). Culture and Care [Electronic version]. In A Clinical Guide to Supportive and Palliative Care for HIV/AIDS. O'Neill, J., Selwyn, P. & Schietinger, H. (eds.), http://hab.hrsa.gov/deliverhivaidscare/files/palliativecare2003.pdfGoogle Scholar
Searight, H.R. & Gafford, J. (2005). Cultural diversity at the end of life: Issues and guidelines for family phyicians. American Family Physician, 71, 515–522.Google Scholar
Seiko, K.J. (1989). Depathologizing dependency: Two perspectives. Psychiatric Annals, 19, 653–658.Google Scholar
Solomon, M., Dokken, D., Fleischman, A., et al. (2002). The Initiative for Pediatric Palliative Care (IPPC): Background and goals. http://www.ippcweb.org/initiative.pdf.Google Scholar
Song, S. & Ahn, P. (2007). Culture Clues: Communicating with your Korean Patient: Patient and Family Education Services at the University of Washington Medical Center. http://depts.washington.edu/pfes/CultureClues.htm.Google Scholar
Srivastava, R. (2007). The Healthcare Professional's Guide to Clinical Cultural Competence. Elseveiir, Canada: John Horne Publisher.Google Scholar
Surbone, A. (2008). Cultural aspects of communication in cancer care. Supportive Care in Cancer, 16, 235–240.Google Scholar
Taylor, J. (2003). Confronting “culture” in medicine's “culture of not culture”. Academic Medicine, 78, 555–559.Google Scholar
Tellez–Giron, P. (2007). Providing culturally sensitive end-of-life care for the Latino/a community. Wisconsin Medical Journal, 106, 402–406.Google Scholar
Thibodeaux, A.G. & Deatrick, J.A. (2007). Cultural influence on family management of children with cancer. Journal of Oncology Nursing, 24, 227–233.Google Scholar
Thrane, S. (2010). Hindu end of life death, dying, suffering, and karma. Journal of Hospice & Palliative Nursing, 12, 337–344.Google Scholar
Tomlinson, D., Capra, M., Gammon, J., et al. (2006). Parental decision making in pediatric cancer end–of-life care: Using focus group methodology as a prephase to seek participant design input. European Journal of Oncology Nursing, 10, 198–206.CrossRefGoogle ScholarPubMed
University of Washington Medical Center. (2007). Culture Clues: Communicating with your Russian Patient: Patient and Family Education Services at the University of Washington Medical Center. http://depts.washington.edu/pfes/CultureClues.htm.Google Scholar
Watch Tower Bible and Tract Society of Pennsylvania. (2012). Jehovah's Witnesses: Watchtower Society Official Web Site. http://www.watchtower.org.Google Scholar
Whitman, S.M. (2007). Pain and suffering as viewed by the Hindu religion. Journal of Pain, 8, 607–613.Google Scholar
Woo, K. (1999). Care for chinese palliative patients. Journal of Palliative Care, 15, 70–74.Google Scholar
Wiener, L., Ballard, E., Brennan, T., et al. (2008). How I wish to be remembered: The use of an advance care planning document in adolescent and young adult populations. Journal of Palliative Medicine, 11, 1309–1313.Google Scholar
Wolfe, J., Klar, N., Holcombe, E.G., et al. (2000). Understanding of prognosis among parents of children who died of cancer: Impact on treatment goals and integration of palliative care. Journal of the American Medical Association, 284, 2469–2475.Google Scholar
Xu, Y. (2007). Death and dying in the Chinese culture: Implications for health care practice. Home Health Care Management and Practice, 19, 412–414.Google Scholar