Original Article
Diversity of Patients’ Beliefs about the Soul after Death and Their Importance in End-of-Life Care
Abstract
Background: Because beliefs about the soul after death affect the dying experience, patients and survivors may want to discuss those beliefs with their healthcare provider; however, almost no medical research describes such beliefs, leaving healthcare professionals ill prepared to respond. This exploratory study begins the descriptive process.
Methods: Assuming that culture is key, we asked older adult Mexican American (MA), European American (EA), and African American (AA) inpatients their beliefs about whether the soul lives on after physical death; if so, where; and what the “afterlife” is like.
Results: Some beliefs varied little across the sample. For example, most participants said that the soul lives on after physical death, leaves the body immediately at death, and eventually reaches heaven. Many participants also said death ends physical suffering; however, other beliefs varied distinctly by ethnic group or sex. More AAs than MAs or EAs said that they believed that the soul after physical death exists in the world (57% vs 35% and 33%) or interacts with the living (43% vs 31% and 28%). Furthermore, in every ethnic group more women than men said they believed that the soul exists in the world (42% vs 29% for MAs, 45% vs 14% for EAs, and 71% vs 43% for AAs).
Conclusions: As death nears, patients or survivors may want to discuss beliefs about the soul after death with their healthcare provider. This preliminary study characterizes some of those beliefs. By suggesting questions to ask and responses to give, the study provides healthcare professionals a supportive, knowledgeable way to participate in such discussions.
This content is limited to qualifying members.
Existing members, please login first
If you have an existing account please login now to access this article or view purchase options.
Purchase only this article ($25)
Create a free account, then purchase this article to download or access it online for 24 hours.
Purchase an SMJ online subscription ($75)
Create a free account, then purchase a subscription to get complete access to all articles for a full year.
Purchase a membership plan (fees vary)
Premium members can access all articles plus recieve many more benefits. View all membership plans and benefit packages.
References
1. Donaldson MS, Field MJ. Measuring quality of care at the end of life. Arch Intern Med 1998; 158: 121–128.
2. Lo B, Quill T, Tulsky J. Discussing palliative care with patients. Ann Intern Med 1999; 130: 744–749.
3. Moadel A, Morgan C, Fatone A, et al. Seeking meaning and hope: self-reported spiritual and existential needs among an ethnically-diverse cancer patient population. Psycho-Oncology 1999; 8: 378–385.
4. Daaleman TP, VandeCreek L. Placing religion and spirituality in end-of-life care. JAMA 2000; 284: 2514–2517.
5. Puchalski CM. Spirituality and end-of-life care: a time for listening and caring. J Palliat Med 2002; 5: 289–294.
6. Tong E, McGraw SA, Dobihal E, et al. What is a good death? Minority and non-minority perspectives. J Palliat Care 2003; 19: 168–175.
7. Puchalski CM, Lunsford B, Harris MH, et al. Interdisciplinary spiritual care for seriously ill and dying patients: a collaborative model. Cancer J 2006; 12: 398–416.
8. Sulmasy DP. Spiritual issues in the care of dying patients: “… It’s okay between me and God.” JAMA 2006; 296: 1385–1392.
9. Jackson VI, Mack J, Matsuyama R, et al. A qualitative study of oncologists’ approaches to end-of-life care. J Palliat Med 2008; 11: 893–903.
10. Puchalski C, Ferrell B, Virani R, et al. Improving the quality of spiritual care as a dimension of palliative care: the report of the consensus conference. J Palliat Med 2009; 12: 885–904.
11. Balboni TA, Paulk ME, Balboni MJ, et al. Provision of spiritual care to patients with advanced cancer: associations with medical care and quality of life near death. J Clin Oncol 2010; 28: 445–452.
12. Larimore WL. Providing basic spiritual care for patients: should it be the exclusive domain of pastoral professionals? Am Fam Phys 2001; 63: 36–41.
13. Anandarajah G, Hight E. Spirituality and medical practice: using the HOPE questions as a practical tool for spiritual assessment. Am Fam Phys 2001; 63: 81–88.
14. Balboni TA, Vanderwerker LC, Block SD, et al. Religiousness and spiritual support among advanced cancer patients and associations with end-of-life treatment preferences and quality of life. J Clin Oncol 2007; 25: 555–560.
15. Astrow AB, Wexler A, Texeira K, et al. Is failure to meet spiritual needs associated with cancer patients’ perceptions of quality of care and their satisfaction with care? J Clin Oncol 2007; 25: 5753–5757.
16. Widera EW, Rosenfeld KE, Fromme EK, et al. Approaching patients and family members who hope for a miracle. J Pain Symptom Manage 2011; 42: 119–125.
17. Reinke LF, Slatore CG, Uman J, et al. Patient-clinician communication about end-of-life care topics: is anyone talking to patients with chronic obstructive pulmonary disease? J Palliat Med 2011; 14: 923–928.
18. McClain-Jacobson C, Rosenfeld B, Kosinski A, et al. Belief in an afterlife, spiritual well-being and end-of-life despair in patients with advanced cancer. Gen Hosp Psychiatry 2004; 26: 484–486.
19. Orr RD, Marshall PA, Osborn J. Cross-cultural considerations in clinical ethics consultations. Arch Fam Med 1995; 4: 159–164.
20. Carrillo JE, Green AR, Betancourt JR. Cross-cultural primary care: a patient-based approach. Ann Intern Med 1999; 130: 829–834.
21. Kagawa-Singer M, Blackhall LJ. Negotiating cross-cultural issues at the end of life: “you got to go where he lives.” JAMA 2001; 286: 2993–3001.
22. Van Biema D. Guardian angels are here, say most Americans. Time. September 18, 2008. http://www.time.com/time/nation/article/0,8599,1842179,00.html. Accessed March 7, 2012.
23. Koenig BA. Understanding cultural difference in caring for dying patients. West J Med 1995; 163: 244–249.
24. O’Connell LJ. Religious dimensions of dying and death. West J Med 1995; 163: 231–235.
25. Hallenbeck J, Goldstein MK, Mebane EW. Cultural considerations of death and dying in the United States. Clin Geriatr Med 1996; 12: 393–405.
26. Shapiro E. Family bereavement and cultural diversity: a social development perspective. Fam Proc 1996; 35: 313–332.
27. Carrese JA, Rhodes LA. Bridging cultural differences in medical practice: the case of discussing negative information with Navajo patients. J Gen Intern Med 2000; 15: 92–96.
28. Block SD. Psychological considerations, growth, and transcendence at the end of life: the art of the possible. JAMA 2001; 285: 2898–2905.
29. Hallenbeck JL. Intercultural differences and communication at the end of life. Prim Care 2001; 28: 401–413.
30. Krakauer EL, Crenner C, Fox K. Barriers to optimum end-of-life care for minority patients. J Am Geriatr Soc 2002; 50: 182–190.
31. Crawley LVM, Marshall PA, Lo B, et al. Strategies for culturally effective end-of-life care. Ann Intern Med 2002; 136: 673–679.
32. Byock I. The meaning and value of death. J Palliat Med 2002; 5: 279–288.
33. Weissman DE. Decision making at a time of crisis near the end of life. JAMA 2004; 292: 1738–1743.
34. Perkins HS, Shepherd KJ, Cortez JD, et al. Exploring chronically ill seniors’ attitudes about discussing death and postmortem medical procedures. J Am Geriatr Soc 2005; 53: 895–900.
35. Barclay JS, Blackhall LJ, Tulsky JA. Communication strategies and cultural issues in the delivery of bad news. J Palliat Med 2007; 10: 958–977.
36. Perkins HS. Culture as a useful conceptual tool in clinical ethics consultation. Camb Q Healthc Ethics 2008; 17: 164–172.
37. Perkins HS, Cortez JD, Hazuda HP. Cultural beliefs about a patient’s right time to die: an exploratory study. J Gen Intern Med 2009; 24: 1240–1247.
38. US Census Bureau. Table 6. Resident population by sex, race, and Hispanic-origin status: 2000 to 2009. http://www.census.gov/compendia/statab/2012/tables/12s0006.pdf. Accessed November 1, 2011.
39. US Census Bureau. State and county QuickFacts. San Antonio (city), Texas. http://quickfacts.census.gov/qfd/states/48/4865000.html. Accessed November 1, 2011.
40. McKinley ED, Garrett JM, Evans AT, et al. Differences in end-of-life decision making among black and white ambulatory cancer patients. J Gen Intern Med 1996; 11: 651–656.
41. Lincoln YS, Guba EG. Naturalistic Inquiry. Newbury Park, CA, Sage Publications, 1985: 199–202.
42. Braun UK, Beyth RJ, Ford ME, et al. Voices of African American, Caucasian, and Hispanic surrogates on the burdens of end-of-life decision making. J Gen Intern Med 2008; 23: 267–274.
43. Hazuda HP, Comeaux PJ, Stern MP, et al. A comparison of three indicators for identifying Mexican Americans in epidemiologic research. Methodological findings from the San Antonio Heart Study. Am J Epidemiol 1986; 123: 96–112.
44. Perkins HS, Geppert CMA, Gonzales A, et al. Cross-cultural similarities and differences in attitudes about advance care planning. J Gen Intern Med 2002; 17: 48–57.
45. Perkins HS, Cortez JD, Hazuda HP. Advance care planning: does patient gender make a difference? Am J Med Sci 2004; 327: 25–32.
46. Perkins HS, Cortez JD, Hazuda HP. Patients’ diverse beliefs about what happens at the time of death. J Hosp Med 2012; 7: 110–116.
47. Radey C. Knowing souls. J Clin Ethics 1992; 3: 307–308.
48. Jacobson JA, Francis LP, Battin MP, et al. Dialogue to action: lessons learned from some family members of deceased patients at an interactive program in seven Utah hospitals. J Clin Ethics 1997; 8: 359–371.
49. Daaleman TP, Usher BM, Williams SW, et al. An exploratory study of spiritual care at the end of life. Ann Fam Med 2008; 6: 406–411.
50. Alcorn SR, Balboni MJ, Prigerson HG, et al. “If God wanted me yesterday, I wouldn’t be here today”: religious and spiritual themes in patients’ experiences of advanced cancer. J Palliat Med 2010; 13: 581–588.
51. Hood RE. Ghost and spirits in Afro culture: Morrison and Wilson. Anglican Theol Rev 1991; 73: 297.
52. O’Gorman SM. Death and dying in contemporary society: evaluations of current attitudes and their relevance to recent understandings of health and healing. J Adv Nurs 1998; 27: 1127–1135.
53. Hines-Smith S. “Fret no more, my child… for I’m all over heaven all day”: religious beliefs in the bereavement of African American, middle-aged daughters coping with the death of an elderly mother. Death Stud 2002; 26: 309–323.
54. Branch WT, Torke A, Brown-Haithco RC. The importance of spirituality in African-Americans’ end-of-life experience. J Gen Intern Med 2006; 21: 1203–1205.
55. Mohrmann ME. The practice of the ministry of medicine. Loma Linda, CA: Loma Linda University Center for Christian Bioethics; 1998.
56. Johnson KS, Elbert-Avila KI, Tulsky JA. The influence of spiritual beliefs and practices on the treatment preferences of African Americans: a review of the literature. J Am Geriatr Soc 2005; 53: 711–719.
57. Curlin FA, Hall DE. Strangers or friends? A proposal for a new spirituality-in-medicine ethics. J Gen Intern Med 2005; 20: 370–374.
58. Hanson LC, Dobbs D, Usher BM, et al. Providers and types of spiritual care during serious illness. J Palliat Med 2008; 11: 907–914.
59. The ARDA. Certainty about going to heaven. Baylor Religion Survey, wave 2, 2007. http:/www.thearda.com/quickstats/qs_155.asp. Accessed November 1, 2011.
60. Pew Forum on Religion & Public Life/US Religious Landscape Survey. Summary of key findings. http://religions.pewforum.org/pdf/report2religious-landscape-study-key-findings.pdf. Accessed November 1, 2011.
61. Graham B. We may all be reunited when we die. San Antonio Express-News. March 2, 1999.
62. Newcott B. Life after death. AARP The Magazine 2007; 50: 66–70.
63. Ehman JW, Ott BB, Short TH, et al. Do patients want physicians to inquire about their spiritual or religious beliefs if they become gravely ill? Arch Intern Med 1999; 159: 1803–1806.
64. Quill TE, Brody H. Physician recommendations and patient autonomy: finding a balance between physician power and patient choice. Ann Intern Med 1996; 125: 763–769.
65. Emanuel EJ, Fairclough DL, Wolfe P, et al. Talking with terminally ill patients and their caregivers about death, dying, and bereavement. Is it stressful? Is it helpful? Arch Intern Med 2004; 164: 1999–2004.
66. Brett AS, Jersild P. “Inappropriate” treatment near the end of life: conflict between religious convictions and clinical judgment. JAMA 2003; 163: 1645–1649.
67. Costello J. Nursing older dying patients: findings from an ethnographic study of death and dying in elderly care wards. J Adv Nurs 2001; 35: 59–68.
