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Seriously ill patients' discussions of preparation and life completion: An intervention to assist with transition at the end of life

Published online by Cambridge University Press:  26 November 2009

Karen E. Steinhauser ,
Stewart C. Alexander ,
Ira R. Byock ,
Linda K. George  and
James A. Tulsky
Karen E. Steinhauser*
Affiliation:
Center for Health Services Research in Primary Care, Durham VA Medical Center, Durham, North Carolina Center for Palliative Care, Durham VA Medical Center, Durham, North Carolina Department of Medicine, Duke University, Durham, North Carolina Center for the Study of Aging and Human Development, Duke University, Durham, North Carolina
Stewart C. Alexander
Affiliation:
Center for Health Services Research in Primary Care, Durham VA Medical Center, Durham, North Carolina Center for Palliative Care, Durham VA Medical Center, Durham, North Carolina Department of Medicine, Duke University, Durham, North Carolina
Ira R. Byock
Affiliation:
Dartmouth Medical School, Hanover, New Hampshire
Linda K. George
Affiliation:
Center for the Study of Aging and Human Development, Duke University, Durham, North Carolina Department of Sociology, Duke University, Durham, North Carolina
James A. Tulsky
Affiliation:
Center for Health Services Research in Primary Care, Durham VA Medical Center, Durham, North Carolina Center for Palliative Care, Durham VA Medical Center, Durham, North Carolina Department of Medicine, Duke University, Durham, North Carolina Center for the Study of Aging and Human Development, Duke University, Durham, North Carolina Institute on Care at the End of Life, Duke University, Durham, North Carolina
*
Address correspondence and reprint requests to: Karen E. Steinhauser, VA and Duke Medical Centers, Center for Palliative Care, Hock Plaza, 2424 Erwin Rd., Suite 1105, Box 2720, Durham, NC 27705. E-mail: karen.steinhauser@duke.edu
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Abstract

Objective:

Patients approaching the end of life not only face challenges to physical well-being but also threats to emotional and spiritual integrity. Yet, identifying appropriate, effective, and brief interventions to address those concerns has proven elusive. We developed an intervention based on life review and emotional disclosure literatures and conducted a pilot study to determine feasibility and acceptability. This article presents qualitative intervention responses.

Method:

We conducted a three-armed randomized control trial to evaluate the effects of preparation and life completion discussion on health outcomes in patients with advanced serious illness. Hospice-eligible subjects were randomly assigned to one of three groups: (1) intervention (life completion discussion intervention), (2) attention control (relaxation meditation), and control (no intervention). Subjects in the intervention arm met with a facilitator three times. Session 1 focused on life story, Session 2 on forgiveness, and Session 3, on heritage and legacy.

Results:

Eighteen subjects participated in the pilot intervention interviews. Subjects from a range of socioeconomic backgrounds completed the intervention with equal facility. Results from Session 1 demonstrate narrative responses participants gave as they reconnected with previous life roles, values, and accomplishments. The second session illustrated reflections of choices one might have made differently and exploration of forgiveness offered and sought. Content from the first and second sessions laid the foundation for discussing Session 3's lessons learned and heritage and legacy. Responses are summarized to assist clinicians in anticipating life review content that may improve overall quality of life at the end of life.

Significance of results:

Discussions of life completion may improve important health outcomes for patients at the end of life. This intervention may provide a brief, standardized, and transportable means for improving the quality of life of patients with advanced serious illness.

Keywords

Emotional and spiritual integrityLife completionInterventionsGerontology
Type
Original Articles
Information
Palliative & Supportive Care , Volume 7 , Issue 4 , December 2009 , pp. 393 - 404
Copyright
Copyright © Cambridge University Press 2009

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References

REFERENCES

Butler, R.N. (1963). The life review: An interpretation of reminiscence in the aged. Psychiatry, 26, 65–76.CrossRefGoogle ScholarPubMed
Butler, R.N. (1974). Succesful aging and the role of the life review. Journal of the American Geriatric Society, 22, 529–535.Google Scholar
Butler, R.N. (1980). The life review: An unrecognized bonanza. International Journal of Aging & Human Development, 12, 35–38.Google Scholar
Byock, I. (1996). The nature of suffering and the nature of opportunity at the end of life. Clinics in Geriatric Medicine, 12, 237–252.Google Scholar
Byock, I. (1997). Dying Well. New York: Riverhead Books.Google Scholar
Byock, I.R. (1999). Conceptual models and the outcomes of caring. Journal of Pain and Symptom Management, 17, 83–92.Google Scholar
Cassell, E.J. (1992). The nature of suffering: Physical, psychological, social, and spiritual aspects. NLN Publications (15-2461), 1–10.Google Scholar
Chochinov, H.M., Hack, T., Hassard, T., et al. (2005). Dignity therapy: A novel psychotherapeutic intervention for patients near the end of life. Journal of Clinical Oncology, 23(24), 5520–5525.Google Scholar
Corbin, J. & Strauss, A. (1993). Methods of Qualitative Research. Thousand Oaks, CA: Sage Publications.Google Scholar
Daaleman, T.P., Kuckelman Cobb, A. & Frey, B.B. (2001). Spirituality and well-being: An exploratory study of the patient perspective. Social Science and Medicine, 53, 1503–1511.Google Scholar
Daaleman, T.P. & Nease, D.E. Jr. (1994). Patient attitudes regarding physician inquiry into spiritual and religious issues. Journal of Family Practice, 39(6), 564–568.Google Scholar
Department of Veterans Affairs. (2003). VHA Directive 2003-008: Palliative Care Consult Teams (PCCT). Washington, DC: Department of Veterans Affairs.Google Scholar
End-of-life care: National Institutes of Health statement on the state of the science. (2005). AWHONN Lifelines, 9(1), 15–22.Google Scholar
Erikson, E. (1982). The Life Cycle Completed: A Review. New York: Norton.Google Scholar
Field, M. & Cassel, C. (1997). Approaching Death: Improving Care at the End of Life. Washington, DC: Institute of Medicine.Google Scholar
Fratorolli, J. (2006). Experimental disclosure and its moderators: A meta-analysis. Pyschological Bulletin, 132, 823–865.Google Scholar
Giddens, A. (1983). Central Problems in Social Theory. Berkeley: University of California Press.Google Scholar
Glaser, B. & Strauss, A. (1968). A Time for Dying. Chicago: Aldine.Google Scholar
Grande, G.E. & Todd, C.J. (2000). Why are trials in palliative care so difficult? Palliative Medicine, 14, 69–74.Google Scholar
Hales, S., Zimmermann, C., & Rodin, G. (2008). The quality of dying and death. Archives of Internal Medicine, 168, 912–918.Google Scholar
Hirsch, J.K., Duberstein, P.R., Conner, K.R., et al. (2006). Future orientation and suicide ideation and attempts in depressed adults ages 50 and over. American Journal of Geriatric Psychiatry, 14, 752–757.Google Scholar
Jordhoy, M.S., Kaasa, S., Fayers, P., et al. (1999). Challenges in palliative care research; recruitment, attrition and compliance: Experience from a randomized controlled trial. Palliative Medicine, 13, 299–310.CrossRefGoogle ScholarPubMed
Lewis, M.I. & Butler, R.N. (1974). Life-review therapy. Putting memories to work in individual and group psychotherapy. Geriatrics, 29, 165–173.Google Scholar
Puchalski, C.M. (2002). Spirituality and end-of-life care: A time for listening and caring. Journal of Palliative Medicine, 5, 289–294.CrossRefGoogle ScholarPubMed
Puchalski, C. (2004). Spirituality in health: The role of spirituality in critical care. Critical Care Clinics, 20, 487–504.CrossRefGoogle ScholarPubMed
Puchalski, C.M., Dorff, R.E. & Hendi, I.Y. (2004). Spirituality, religion, and healing in palliative care. Clinics in Geriatric Medicine, 20, 689–714.Google Scholar
Rousseau, P. (1997). Hope and the terminally ill. Clinics in Geriatrics, 5, 15.Google Scholar
Staton, J., Shuy, R. & Byock, I. (2001). A Few Months to Live: Different Paths to Life's End. Washington, DC: Georgetown University Press.Google Scholar
Steinhauser, K.E., Alexander, S.C., Byock, I.R., et al. (2008). Do preparation and life completion discussions improve functioning and quality of life in seriously ill patients? A pilot randomized control trial. Journal of Palliative Medicine, 11, 1234–1240.Google Scholar
Steinhauser, K.E., Bosworth, H.B., Clipp, E.C., et al. (2002). Initial assessment of a new instrument to measure quality of life at the end of life. Journal of Palliative Medicine, 5, 829–841.Google Scholar
Steinhauser, K.E., Christakis, N.A., Clipp, E.C., et al. (2000 a). Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA, 284, 2476–2482.Google Scholar
Steinhauser, K.E., Clipp, E.C., Bosworth, H.B., et al. (2004). Measuring quality of life at the end of life: Validating the QUAL-E. Palliative and Supportive Care, 2, 3–14.Google Scholar
Steinhauser, K.E., Clipp, E.C., McNeilly, M., et al. (2000 b). In search of a good death: Observations of patients, families, and providers. Annals of Internal Medicine, 132, 825–832.Google Scholar
Steinhauser, K.E., Voils, C.I., Clipp, E.C., et al. (2006). “Are you at peace?” One item to probe spiritual concerns at the end of life. Archives of Internal Medicine, 166, 101–105.Google Scholar
Stern, P. (1985). Using grounded theory method in nursing research. In Qualitative Research Methods in Nursing, Leining, M.M. (ed.), Orlando, FL: Grune and Stratton, Inc.Google Scholar
Taylor, C. (1970). In Horizontal Orbit: Hospitals and the Cult of Efficiency. New York: Holt, Rinehart, and Winston.Google Scholar
Van Gennep, A. (1960). The Rites of Passage. Chicago: University of Chicago Press.Google Scholar