Making sense of a diagnosis of incurable cancer: The importance of communication
Keywords:incurable cancer, patient coping, making-sense, uncertainty
Purpose: Patients diagnosed with incurable cancer may experience existential distress
and difficulty in re-appraising their lives because of uncertainty about the future.
Objectives: This study sought to understand how patients living with incurable cancer made sense of their diagnosis, how they prepared for the future and what support they wanted from their health professionals.
Subjects: 27 patients were recruited from the oncology and palliative care service at three metropolitan hospitals.
Methods: A qualitative research approach was used. Semi-structured face-to-face interviews were conducted. Interviews were audio-taped and transcribed verbatim. Data was analyzed using the constant-comparative method.
Results: Participants did not express a need to make sense of their diagnosis nor always ascribe to a particular religious belief; rather, many relied on a personal spirituality or philosophy to bring meaning to their experience. Importance was placed on their doctor keeping up with technology, being honest, and being confident and positive.
Conclusion: Participants in this study had incurable cancer but making sense of their current situation was not a conscious priority. For these patients, uncertainty was a positive, as certainty for them indicates death is approaching. What these interviews suggest, from the patient’s perspective, is that there is an implied contract between doctor and patient during this period which involves the doctor managing the flow of difficult information so that the patient can maintain normality for as long as possible. Understanding this helps to explain the difficulty of having advance care planning conversations within this setting, despite the many opportunities that a longer disease trajectory would seem to offer.
Knight SJ, Emanuel L. Processes of adjustment to end-of-life losses: A reintegration model. J Palliat Med. 2007;10:1190-1198. doi:10.1089/jpm.2006.0068.
Sand L, Olsson M, Strang P. Coping strategies in the presence of one's own impending death from cancer. J Pain Symptom Manage. 2009;37:13-22. doi:10.1016/j.jpainsymman.2008.01.013 [Published Online First: 3 August 2008]
Park, C. Making sense of the meaning literature: An integrative review of meaning making and its effects on adjustment to stressful life events. Psychol Bull. 2010;136:257-301. doi:10.1037/a0018301.
McCoubrie RC, Davies AN. Is there a correlation between spirituality and anxiety and depression in patients with advanced cancer? Support Care Cancer. 2006;14:379-385. doi: 10.1007/s00520-005-0892-6 [Published Online First: 10 November 2005]
McClain CS, Rosenfeld B, Breitbard W. Effect of spiritual well-being on end-of-life despair in terminally ill. Lancet. 2003;361:1603-1607. doi:10.1016/S0140-6736(03)13310-7.
Chochinov HM, Tataryn DJ, Wilson KG, et al. Prognostic awareness and the terminally ill. Psychosomatics. 2000;41:500-504. doi:10.1176/appi.psy.41.6.500.
Thompson GN, Chochinov HM, Wilson KG, et al. Prognostic acceptance and the well-being of patients receiving palliative care for cancer. J Clin Oncol. 2009;27:5757-5761. doi: 10.1200/JCO.2009.22.9799 [Published Online First: 13 October 2009]
Kristeller JL, Sheets V, Johnson T, et al. Understanding religious and spiritual influences on adjustment to cancer: individual patterns and differences. J Behav Med. 2011;34:550-561. doi:10.1007/s10865-011-9335-7 [Published Online First: 26 March 2011].
Brietbart W, Rosenfeld B, Pessin H et al. Depression, hopelessness, and desire for hastened death in terminally ill cancer patients. JAMA. 2000;284:2907-2911. doi:10.1001/jama.284.22.2907.
Nelson C, Rosenfeld B, Breitbard W, et al. Spirituality, depression and religion in the terminally ill. Psychosomatics. 2002;43:213:220. doi:10.1176/appi.psy.43.3.213.
Wilson KG, Chochinov HM, McPherson CJ et al. Desire for euthanasia or physician-assisted suicide in palliative cancer care. Health Psychol. 2007;26:314-323. doi:10.1037/0278-6184.108.40.2064
Brady MJ, Peterman AH, Fitchett G et al. A case for including spirituality in quality of life measurement in oncology. Psychooncology. 1999;8:417-428. doi:10.1002/(SICI)1099-1611(199909/10)8:5<417::AID-PON398>3.0.CO;2-4.
Steinheuser KE, Christakis NA, Clipp EC, et al. Factors considered important at the end of life by patients, fmaily, physicians, and other care providers. JAMA. 2000;284:2476-2482. doi:10.1001/jama.284.19.2476.
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. doi:10.1089/jpm.2009.0343 [Published Online First: 21 April 2010].
Swensen CH, Fuller S, Clements R. Stage of religious faith and reactions to terminal cancer. J Psychol Theol. 1993;21:235-238.
Taylor EJ. Factors associated with meaning in life among people with recurrent cancer. Oncol Nurs Forum. 1993;20:1399-1407.
Mack JW, Nilsson M, Balboni T. Peace, equanimity and acceptance in the cancer experience (PEACE): Validation of a scale to assess acceptance and struggle with terminal illness. Cancer Nurs. 2008;112:2509-2517. doi:10.1002/cncr.23476 [Published Online First: 21 April 2008].
Ray A, Block SD, Friedlander RJ. Peaceful awareness in patients with advanced cancer. J Palliat Med. 2006;9:1359-1368. doi:10.1089/jpm.2006.9.1359.
Ruiterkamp J. Improved survival of patients with primary distant metastatic breast cancer in the period of 1995-2008. A nationwide population-based study in the Netherlands. Breast Cancer Res Treat. 2011;128:495-503. doi:10.1007/s10549-011-1349-x
Authors xxxx Living with advanced cancer and an uncertain disease trajectory: an emerging patient population in palliative care? BMJ Support Palliat Care. Published Online First: 28 January 2013. doi:10.1136/bmjspcare-2012-000381.
Corbin JM, Strauss AL. Basics of qualitative research; Techniques and procedures for developing grounded theory. 3rd ed. Los Angeles: Sage 2008.
Austin, JT & Vancouver, JB. Goal constructs in psychology: Structure, process and content. Psychol Bull. 1996;120:338-375. doi:10.1037/0033-2909.120.3.338.
Singer JL, Salovey P. Organized knowledge structures and personality: Person schemas, self-schemas, prototypes, and scripts. In: Horowitz MJ, ed. Person schemas and maladaptive interpersonal patterns. Chicago, IL: University of Chicago Press.1991:33-79
Sebastien S, Thewes B, Humphris G, et al. Fear of cancer recurrence in adult cancer survivors: A systematic review of quantitative studies. J Cancer Surviv. 2013;7:300-322. doi:10.1007/s11764-013-0272-z [Published Online First: 10 March 2013]
Bonanno GA, Papa A, Lalande K, et al. Grief processing and deliberate grief avoidance: A prospective comparison of bereaved spouses and parents in the United States and the People's Republic of China. J Consult Clin Psychol. 2005;73:86-98. doi:10.1037/0022-006X.73.1.86
Wortman CB, Silver RC. The myths of coping with loss revisited. In: M.S. Stroebe MS, Hansson RO, Strobe W, Schut H, eds. Handbook of bereavement research: consequences, coping, and care. Washington, DC: American Psychological Association. 2001:405-429.
Winterling J, Wasteson E, Sidenvall B, et al. Relevance of philosophy of life and optimism for psychological distress among individuals in a stage where death is approaching. Support Care Cancer. 2006;14:310-9. doi:10.1007/s00520-005-0870-z [Published Online First: 3 August 2005]
Kagawa-Singer M. Redefining health: Living with cancer. Soc Sci Med 1993; 37:1549-62.
Daltroy LH, Larson MG, Eaton HM, et al. Discrepancies between self-reported and observed physical function in the elderly: the influence of response shift and other factors. Soc Sci Med 1999;48:1549-62. doi:10.1016/S0277-9536(99)00048-9.
Padilla GV, Miskel MH, Grant MM. Uncertainty, appraisal and quality of life. Qual Life Res 1992;1:155-65. doi:10.1007/BF00635615.
Tennen H, Affleck G. Benefit-finding and benefit-reminding. In: Snyder CR, Lopez SJ, eds. Handbook of positive psychology. New York, NY: Oxford University Press. 2002:584-597.
Mount BM, Boston PH, Cohen SR. Healing connections: On moving from suffering to a sense of well-being. J Pain Symptom Manage. 2007;33:373-88. doi:10.1016/j.jpainsymman.2006.09.014.
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