A narrative framework for forgiveness at the end of life: suggestions for future research in health communication

ABSTRACT

Forgiveness is a topic that is relevant and prominent in end of life conversations. However, while the process of forgiveness has become increasingly studied in health contexts by communication scholars, through various methodologies and across multiple contexts, research on forgiveness in the end of life context, particularly in the field of health communication, is lacking. Moreover, there is a need for qualitative inquiry, and I argue that as this research gap is addressed, the projects of the medical humanities and hospice can—and should—inform how health communication scholars situate and understand forgiveness at the end of life. This essay proposes an interpretive narrative approach, which grounds forgiveness within the narratives of the living and the dying, of persons and not patients.

KEYWORDS:

• Forgiveness
• end of life
• narrative
• medical humanities
• hospice and palliative care

Notes

1. Douglas L. Kelley, Bianca M. Wolf, and Shelby E. Broberg, “Forgiveness Communication and Health,” (online publication: 2016, doi:10.1093/acrefore/9780190228613.013.9), in Oxford Research Encyclopedia of Communication (Oxford: Oxford University Press, in press).

2. Maryjo Prince-Paul, “Relationships Among Communicative Acts, Social Well-Being, and Spiritual Well-Being on the Quality of Life at the End of Life in Patients with Cancer Enrolled in Hospice,” Journal of Palliative Medicine 11, no. 1 (2008): 20–25.

3. For a review of forgiveness and health literature in communication, see Kelley, Wolf, and Broberg, “Forgiveness Communication and Health”; for a review of health communication literature, see Annegret F. Hannawa et al., “Identifying the Field of Health Communication,” Journal of Health Communication 20, no. 5 (2015): 521–30.

4. Marjorie Baker, “Facilitating Forgiveness and Peaceful Closure: The Therapeutic Value of Psychosocial Intervention in End-of-Life Care,” Journal of Social Work in End-of-Life & Palliative Care 1, no. 4 (2006): 83–96.

5. Sharon R. Kaufman, And a Time to Die: How American Hospitals Shape the End of Life (Chicago: University of Chicago Press, 2006), 69; see also Camilla Zimmerman and Gary Rodin, “The Denial of Death Thesis: Sociological Critique and Implications for Palliative Care,” Palliative Medicine 18, no. 2 (2004): 121–28; Elisabeth Kübler-Ross, On Death and Dying (New York: Macmillan, 1969); Jeffrey P. Bishop, The Anticipatory Corpse: Medicine, Power, and the Care of the Dying (Notre Dame, IN: University of Notre Dame Press, 2011); Atul Gawande, Being Mortal: Medicine and What Matters in the End (New York: Macmillan, 2014); Richard Hovey and Jim Paul, “Healing, the Patient Narrative-Story and the Medical Practitioner: A Relationship to Enhance Care for the Chronically Ill Patient,” International Journal of Qualitative Methods 6, no. 4 (2007): 53–66.

6. Though hospice care and palliative care both work towards improving quality of life and relieving symptoms and pain, the two are distinct in an important way. While hospice provides care to patients who have a prognosis of six months or fewer to live, palliative care can be provided at any point during an illness and is not limited to—though it is most common among—dying patients. Thus, in this essay, I conceptualize end of life care as whole-person care that can include both hospice and palliative care, but not palliative care alone.

7. Cicely Saunders, “The Evolution of Palliative Care,” Patient Education and Counseling 41, no. 1 (2000): 7–13.

8. Ibid., 8.

9. Kübler-Ross, On Death and Dying.

10. Daniel M. Fox, “Who We Are: The Political Origins of the Medical Humanities,” Theoretical Medicine 6, no. 3 (1985): 327–41.

11. Sandra L. Ragan, Tiffany Mindt, and Elaine Wittenberg-Lyles, “Narrative Medicine and Education in Palliative Care,” in Narratives, Health, and Healing: Communication Theory, Research, and Practice, ed. Lynn M. Harter, Phyllis M. Japp, and Christina S. Beck (London: Routledge, 2005), 259–75; see also Kübler-Ross, And a Time to Die; Saunders, “The Evolution of Palliative Care.”

12. Hovey and Paul provide a useful explanation of contemporary biomedical discourses, which are rooted in postpositivistic empiricism and consequently delegitimize the validity of data that is not measurable as mere “informational responses directed toward specific charted often yes-or-no check boxes or briefly describe’ responses to questions. The patient’s story is almost never asked for. If it is provided, then it is tolerated but not accepted as evidence to be calculated into the diagnosis/treatment regimens” (“Healing, the Patient Narrative-Story and the Medical Practitioner,” 6).

13. George Engel, “The Clinical Application of the Biopsychosocial Model,” American Journal of Psychiatry 137, no. 5 (1980): 535–44; Francesc Borrell-Carrió, Anthony L. Suchman, and Ronald M. Epstein, “The Biopsychosocial Model 25 Years Later: Principles, Practice, and Scientific Inquiry,” Annals of Family Medicine 2, no. 6 (2004): 577–82. In his 1980 pioneering study, psychiatrist George Engel developed the biopsychosocial medical model to challenge the mainstream biomedical paradigm, which, he argued, privileged technical methods for diagnosing patients and ignored the human elements of suffering not amenable to scientific observation. Engel criticized the separation of mind and body implicit in the “dualistic” biomedical model. Borrell-Carrió, Suchman, and Epstein write: “Engel rejected this view for encouraging physicians to maintain a strict separation between the body-as-machine and the narrative biography and emotions of the person—to focus on the disease to the exclusion of the person who was suffering—without building bridges between the two realms” (577). The biopsychosocial model speaks to this essay’s argument that psychosocial needs, such as forgiveness, are relevant and meaningful during end of life.

14. Ira Byock, The Four Things That Matter Most: A Book About Living (New York: Atria, 2014), Kindle edition; see also Baker, “Forgiveness and Peaceful Closure”; Maureen P. Keeley, “‘Turning Toward Death Together’: The Functions of Messages During Final Conversations in Close Relationships,” Journal of Social and Personal Relationships 24, no. 2 (2007): 225–53.

15. Betty Ferrell et al., “Nurses’ Responses to Requests for Forgiveness at the End of Life,” Journal of Pain and Symptom Management 47, no. 3 (2014): 631–41.

16. Baker, “Forgiveness and Peaceful Closure,” 85; see also Alton R. Hart et al., “Hospice Patients’ Attitudes Regarding Spiritual Discussions with their Doctors,” American Journal of Hospice and Palliative Medicine 20, no. 2 (2003): 135–39; Amy M. Sullivan, Matthew D. Lakoma, and Susan D. Block, “The Status of Medical Education in End-of-life Care,” Journal of General Internal Medicine 18, no. 9 (2003): 685–95.

17. Kelley, Wolf, and Broberg, “Forgiveness Communication and Health.”

18. Robert D. Enright et al., “Interpersonal Forgiveness Within the Helping Professions: An Attempt to Resolve Differences of Opinion,” Counseling and Values 36, no. 2 (1991): 84–103.

19. Kelley, Wolf, and Broberg, “Forgiveness Communication and Health.”

20. Douglas L. Kelley, “The Communication of Forgiveness,” Communication Studies 49, no. 3 (2009): 255–71.

21. Vince Waldron and Douglas L. Kelley, Communicating Forgiveness (Thousand Oaks, CA: Sage, 2008), 93.

22. Ibid., original emphasis.

23. Kelley, Wolf, and Broberg, “Forgiveness Communication and Health.”

24. Everett L. Worthington Jr., Handbook of Forgiveness (London: Routledge, 2005).

25. Kathleen A. Lawler-Row et al., “The Varieties of Forgiveness Experience: Working Toward a Comprehensive Definition of Forgiveness,” Journal of Religion and Health 46, no. 2 (2007): 233–48.

26. Ibid.

27. Frank D. Fincham and Todd B. Kashdan, “Facilitating Forgiveness: Developing Group and Community Interventions,” in Positive Psychology in Practice, ed. Alex P. Linley and Stephen Joseph (Hoboken, NJ: John Wiley & Sons, 2004), 617–37.

28. Matthew C. Whited, Amanda L. Wheat, and Kevin T. Larkin, “The Influence of Forgiveness and Apology on Cardiovascular Reactivity and Recovery in Response to Mental Stress,” Journal of Behavioral Medicine 33, no. 4 (2010): 293–304.

29. Loren L. Toussaint et al., “Why Forgiveness May Protect Against Depression: Hopelessness as an Exploratory Mechanism,” Personality and Mental Health 2, no. 2 (2008): 89–103.

30. Randy A. Sansone, Amy R. Kelley, and Jeremy S. Forbis, “The Relationship Between Forgiveness and History of Suicide Attempt,” Mental Health, Religion, and Culture 16, no. 1 (2013): 31–37.

31. Jon R. Webb et al., “Forgiveness and Health: Assessing the Mediating Effect of Health Behavior, Social Support, and Interpersonal Functioning,” Journal of Psychology 147, no. 5 (2013): 391–414.

32. Kathleen A. Lawler-Row and Rachel L. Piferi, “The Forgiving Personality: Describing a Life Well Lived?” Personality and Individual Differences 41, no. 6 (2006): 1009–20.

33. Kelley, Wolf, and Broberg, “Forgiveness Communication and Health.”

34. Ibid.

35. Michael McCullough, Beyond Revenge: The Evolution of the Forgiveness Instinct (San Francisco: Jossey-Bass, 2008), 4; see also Thomas M. Tripp, Robert J. Bies, and Karl Aquino, “A Vigilante Model of Justice: Revenge, Reconciliation, Forgiveness, and Avoidance,” Social Justice Research 20, no. 1 (2007): 10–34.

36. Kelley, Wolf, and Broberg, “Forgiveness Communication and Health.”

37. For example, see Kelley, Wolf, and Broberg, “Forgiveness Communication and Health”; McCullough, Beyond Revenge; Worthington, Handbook of Forgiveness.

38. For example, see Prince-Paul, “Communicative Acts.”

39. Kelley, Wolf, and Broberg, “Forgiveness Communication and Health.”

40. Everett L. Worthington and Michael Scherer, “Forgiveness Is an Emotion-Focused Coping Strategy that Can Reduce Health Risks and Promote Health Resilience: Theory, Review, and Hypotheses,” Psychology & Health 19, no. 3 (2004): 385–405.

41. Ibid., 394.

42. Kevin S. Seybold et al., “Physiological and Psychological Correlates of Forgiveness,” Journal of Psychology and Christianity 20, no. 3 (2001): 250–59.

43. See Baker, “Forgiveness and Peaceful Closure”; Harvey Max Chochinov et al., “Dignity Therapy: A Novel Psychotherapeutic Intervention for Patients Near the End of Life,” Journal of Clinical Oncology 23, no. 24 (2005): 5520–25; Ferrell et al., “Nurses’ Responses”; Berit Ingersoll-Dayton and Neal Krause, “Self-Forgiveness: A Component of Mental Health in Later Life,” Research on Aging 27, no. 3 (2005): 267–89.

44. See Baker, “Facilitating Forgiveness”; Keeley, “‘Turning Toward Death Together.’”

45. Hannawa et al., “Identifying the Field.”

46. Ibid., 523.

47. This included a search of what Hannawa et al. call “the two flagship journals” of the field, Health Communication and Journal of Health Communication, as well as two other major journals of the field, Journal of Communication in Healthcare and Patient Education and Counseling.

48. Hannawa et al. note that Health Communication, the field’s first peer-reviewed “flagship” journal, was inaugurated in 1989.

49. Hannawa et al.’s analyses of health communication research revealed that “more than half of health communication scholarship appeared across 239 other journals,” (“Identifying the Field,” 527).

50. Ibid., 523.

51. Ibid., 527.

52. Ibid., 524.

53. Ibid., 526.

54. Maureen P. Keeley and Julie M. Yingling, Final Conversations: Helping the Living and the Dying Talk to Each Other (Acton, MA: VanderWyk & Burnham, 2007).

55. Sogyal Rinpoche, The Tibetan Book of Living & Dying (San Francisco: Harper, 2012), Kindle ed., 37.

56. Baker, “Forgiveness and Peaceful Closure,” 83.

57. Keeley and Yingling, Final Conversations, 4.

58. Jon F. Nussbaum et al., Communication and Aging (London: Routledge, 2000); see also Maureen P. Keeley, and J. Koenig Kellas, “Constructing Life and Death Through Final Conversation Narratives,” in Narratives, Health, and Healing: Communication Theory, Research, and Practice, ed. Lynn M. Harter, Phyllis M. Japp, and Christina S. Beck (London: Routledge, 2005), 365–90; Keeley, “‘Turning Toward Death Together.’”

59. Mathias Allemand, Marianne Steiner, and Patrick L. Hill, “Effects of a Forgiveness Intervention for Older Adults,” Journal of Counseling Psychology 60, no. 2 (2013): 279–86.

60. Rebecca Amati and Annegret F. Hannawa, “Physician-perceived Contradictions in End-of-Life Communication: Toward a Self-report Measurement Scale,” Health Communication 30, no. 3 (2015): 241–50.

61. Maggie Callanan and Patricia Kelley, Final Gifts: Understanding and Helping the Dying (London: Hodder & Stoughton, 1992); see also Keeley, “‘Turning Toward Death Together’”; Julie J. Exline et al., “Forgiveness, Depressive Symptoms, and Communication at the End of Life: A Study with Family Members of Hospice Patients,” Journal of Palliative Medicine 15, no. 10 (2012): 1113–19.

62. Keeley, “‘Turning Toward Death Together,’” 244; see also Exline et al., “Forgiveness, Depressive Symptoms.”

63. Keeley, “‘Turning Toward Death Together,’” 244.

64. Exline et al., “Forgiveness, Depressive Symptoms,” 1113.

65. Baker, “Forgiveness and Peaceful Closure,” 83.

66. Ibid.

67. Ibid., 90.

68. Ibid., 93.

69. Arthur P. Bochner, “Bird on the Wire Freeing the Father Within Me,” Qualitative Inquiry 18, no. 2 (2012): 168–73; see also Byock, The Four Things That Matter Most.

70. Byock, The Four Things That Matter Most.

71. Ibid., 4 original emphasis.

72. Ibid., xiii original emphasis.

73. Ibid., xiv.

74. See Anna Towers, Patricia Boston, and Yanna Lambrinidou, Crossing Over: Narratives of Palliative Care (Oxford: Oxford University Press, 2000).

75. Matthew W. Kreuter et al., “Narrative Communication in Cancer Prevention and Control: A Framework to Guide Research and Application,” Annals of Behavioral Medicine 33, no. 3 (2007): 221–35.

76. Hovey and Paul, “Healing, the Patient Narrative-Story and the Medical Practitioner,” 55.

77. Kelley, “The Communication of Forgiveness,” 259.

78. John Paley and Gail Eva, “Narrative Vigilance: The Analysis of Stories in Healthcare,” Nursing Philosophy 6 (2004): 83–97. Though I use narratives and stories interchangeably in this essay, it is worth noting that some interpretive, qualitative researchers find distinction between them. For example, Paley and Eva see narrative as “data” that is more acceptable in medicine because narrativity implies clarity, chronology, clear beginnings and endings, etc. In contrast, stories are perceived as less “controllable” and do not easily lend themselves to objective measurement criteria, given that they often contain “literary, indeed emotional, embellishment” (Hovey and Paul, “Healing, the Patient Narrative-Story and the Medical Practitioner,” 56). Thus, Paley and Eva suggest, “all stories count as narratives but not all narratives count as stories” (“Narrative Vigilance,” 86).

79. Howard Brody, Stories of Sickness (Oxford: Oxford University Press, 2003), 5; see also Arthur W. Frank, The Wounded Storyteller: Body, Illness, and Ethics (Chicago: University of Chicago Press, 2013).

80. Ragan, Mindt, and Wittenberg-Lyles, “Narrative Medicine and Education in Palliative Care,” 262.

81. Hovey and Paul, “Healing, the Patient Narrative-Story and the Medical Practitioner,” 59.

82. Ibid., 57.

83. Ibid., 59–60.

84. Ibid., 56.

85. Ibid., 61.

86. Ibid., 60.

87. Sunwolf, Lawrence R. Frey, and Lisa Keränen, “Healing Effects of Storytelling and Storylistening in the Practice of Medicine,” in Narratives, Health, and Healing: Communication Theory, Research, and Practice, ed. Lynn M. Harter, Phyllis M. Japp, and Christina S. Beck (London: Routledge, 2005), 237–58.

88. Kaufman, And a Time to Die, 69.

89. Gawande, Being Mortal, 209.

90. Sunwolf, Frey, and Keränen, “Healing Effects of Storytelling,” 247.

91. Ibid.

92. Ibid.

93. Ferrell et al., “Nurses’ Responses.”

94. Ibid., 638.

95. Keeley and Yingling, Final Conversations.

96. Lynne Bowyer, “Autonomy and Why You Can ‘Never Let Me Go,’” Journal of Bioethical Inquiry 11, no. 2 (2014): 139–49.

97. Ruth Kannai and Aya Alon “To Come Full Circle,” Patient Education and Counseling (In Press): 1. doi:10.1016/j.pec.2017.01.023.

98. Hovey and Paul, “Patient Narrative-Story.”

99. Bowyer, “Autonomy,” 148.

100. While Ferrell et al. take this approach and use a qualitative data-gathering technique (open-ended survey responses), they analyze the data “in light of communication theory” and point out that “researchers can often discern departures from prevalent theories within the responses” (“Nurses’ Responses,” 633), thus undermining the project of understanding what forgiveness means for the respondents themselves.

101. Keeley takes this approach, although she interviews only family members and not the patients themselves (“‘Turning Toward Death Together’”).

102. Ragan, Mindt, and Wittenberg-Lyles's study is a useful point of reference towards this aim.

103. Richard P. McQuellon and Michael A. Cowan, “Turning Toward Death Together: Conversation in Mortal Time,” American Journal of Hospice and Palliative Medicine 17, no. 5 (2000): 312–18.

104. Barbara Hardy, The Collected Essays of Barbara Hardy (Lanham, MD: Rowman & Littlefield, 1987), 1.