Hostname: page-component-cd9895bd7-7cvxr Total loading time: 0 Render date: 2024-12-21T02:54:19.641Z Has data issue: false hasContentIssue false

Exceptional patients: Narratives of connections

Published online by Cambridge University Press:  04 July 2013

Joan C. Engebretson
Affiliation:
University of Texas Health Science Center-Houston, School of Nursing, University of Texas M. D. Anderson Cancer Center, Houston, Texas
Noemi E. Peterson*
Affiliation:
University of Texas Health Science Center-Houston, School of Nursing, University of Texas M. D. Anderson Cancer Center, Houston, Texas
Moshe Frenkel
Affiliation:
University of Texas Health Science Center-Houston, School of Nursing, University of Texas M. D. Anderson Cancer Center, Houston, Texas
*
Address correspondence and reprint requests to: Noemi Peterson, 4805 Kingfisher Drive, Houston, TX 77035. E-mail: [email protected]

Abstract

Objective:

This study sought to better understand the patient s perspective of the experience of recovery from cancer that appeared to defy medical prognoses.

Methods:

Fourteen cases of medically verified exceptional outcomes were identified. A qualitative approach, employing long narrative interviews was used. Data was analyzed using a cross case thematic analytic approach.

Results:

The major overarching theme was connections, both internal and external. Internal included connections with God or a higher power and with oneself. The external connections, the focus of this paper, included 1) personal connections with friends and family, 2) connections with the medical system: the physician, nurses and other staff, and 3) connections with other patients. They described the nature of these relationships and the importance of frequent contact with family and friends as providing significant emotional and instrumental support. They expressed confidence in receiving care from a reputable clinic, and with very little probing illustrated the importance of the relationship with their providers. They articulated the significance of the compassionate qualities of the physician and identified communication attributes of their physician that were important in establishing this connection. These attributes were demeanor, availability, honesty, sensitivity in the decision making process. They provided examples of positive connections with nurses and other staff as well as with other patients through their illness process.

Significance of results:

The importance of connections in these illness narratives was richly illustrated. These issues often are overlooked in clinical settings; yet they are of crucial importance to the health and well-being of the patients.

Type
Original Articles
Copyright
Copyright © Cambridge University Press 2013 

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

Abdelrazeq, A.S. (2007). Spontaneous regression of colorectal cancer: a review of cases.Google Scholar
Back, A. (2006). Patient-physician communication in oncology: What does the evidence show? Oncology, 20, 6774.Google Scholar
Back, A., Arnold, R. & Tulsky, J. (2009). Mastering Communication with Seriously Ill Patients: Balancing Honesty with Empathy and Hope. New York: Cambridge University Press.CrossRefGoogle Scholar
Baile, W.F., Buckmanb, R., Lenzia, R., et al. (2000). SPIKES – A six step protocol for delivering bad news: Application to the patient with cancer. The Oncologist, 5, 302311.Google Scholar
Beach, M.C. & Inui, T. (2006). Relationship-centered care. A constructive reframing. Journal of General Internal Medicine, 21, S3S8.Google Scholar
Breibart, W., Gibson, C., Poppito, S.R., et al. (2004). Psychotherapeutic interventions at the end of life: A focus on meaning and spirituality. Cancer Journal of Psychiatry, 49, 366372.Google Scholar
Briebart, W., Poppito, S., Rosenfeld, B., et al. (2012). Pilot randomized controlled trial of individual meaning-centered psychotherapy for patients with advanced cancer. Journal of Clinical Oncology, 30, 1304–9.Google Scholar
Challis, G.B. & Stam, H.J. (1990). The spontaneous regression of cancer. A review of cases from 1900 to 1987. Acta Oncologica, 29, 545550.Google Scholar
Chochinov, H.M., Hack, T.F., Hassard, T., et al. (2005). Dignity therapy: a novel psychotherapeutic intervention for patients near the end of life. Journal of Clinical Oncology, 23, 5520–525.Google Scholar
Chochinov, H.M., Kristianson, L.J., Breibart, W., et al. (2011). Effect of dignity therapy on distress and end-of-life experience in terminally ill patients: a randomized controlled trial. Lancet Oncology, 12, 753762.Google Scholar
Classen, C., Butler, L.D., Koopman, C., et al. (2001). Supportive-expressive group therapy and distress in patients with metastatic breast cancer: A randomized clinical intervention trial. Archives of General Psychiatry, 58, 494501.Google Scholar
Ettema, E.J., Derksen, L.D. & van Leeuwen, E. (2010). Existential loneliness and end of life care: A systematic review. Theoretical Medicine and Bioethics. doi:10.1007/s11017-010-9141-1.Google Scholar
Fønnebø, V., Drageset, B.J. & Salamonsen, A. (2012). The NAFKAM international registry of exceptional courses of disease related to the use of complementary and alternative medicine. Global Advances in Health and Medicine, 1, 6062.Google Scholar
Franklin, C.I. (1982). Spontaneous Regression in Cancer. Toronto: Wiley.Google Scholar
Frenkel, M., Shachar, L.A., Engebretson, J., et al. (2010). Activism among exceptional patients with cancer. Supportive Care in Cancer, doi:10.1007/s00520-010-0918-6.Google Scholar
Green, J. & Thorogood, N. (2009). Qualitative methods for Health Research. London: Sage Publications.Google Scholar
Greenstein, M. & Breibart, W. (2000). Cancer and the experience of meaning: a group psychotherapy program for people with cancer. American Journal of Psychotherapy, 54, 486500.Google Scholar
Hall, S., Edmonds, P., Harding, R., et al. (2009). Assessing the feasibility, acceptability and potential effectiveness of Dignity Therapy for people with advanced cancer referred to a hospital-based palliative care team: study protocol. BMC Palliative Care, 16, 8:5.Google Scholar
Hirshberg, C. & Barasch, M.I. (1996). Remarkable Recovery. New York: Riverhead Trade.Google Scholar
Hirshberg, C.B. (1993). Spontaneous Remission. An Annotated Bibliography. Petaluma: Institute of Noetic Sciences.Google Scholar
Hök, J., Forss, A., Falkenberg, T., et al. (2009). What is an exceptional cancer trajectory?: Multiple stakeholder perspectives on cancer trajectories in relation to complementary and alternative medicine use. Integrative Cancer, doi:10.1177/1534735409335607.Google Scholar
Holt-Lunstad, J., Smith, T.B. & Layton, J.B. (2010). Social relationships and mortality risk: A meta-analytic review. PLoS Medicine. doi:10.1371/journal.pmed.1000316.Google Scholar
Jerry, L.M. & Challis, E.B. (1984). Oncology. Philadelphia: Saunders.Google Scholar
Josselson, R., Lieblich, A. & McAdams, D.P. (2002). Up close and personal: The teaching and learning of narrative research. Washington, DC: American Psychological Association.Google Scholar
Keilholz, U. (2007). Disappearing cancer. International Journal of Colorectal Disease, 22, 737738.Google Scholar
Klienman, A. (1988). The Illness Narratives: Suffering, Healing, and the Human Condition. New York: Basic Books.Google Scholar
Lee, S.J., Back, AL, Block, S.D., et al. (2002). Enhancing Physician-Patient Communication. Washington, DC: American Society Hematology Education Program, 464–83.Google Scholar
Lemieux, J., Beaton, D.E., Hogg-Johnson, S., et al. (2007). Responsiveness to change (corrected) due to supportive expressive group therapy, improvement in mood and disease progression in women with metastatic breast cancer. Quality of Life, 16, 10071017.Google Scholar
Leszcz, M. & Goodwin, P.J. (1998). The rationale and foundations of group psychotherapy for women with metastatic breast cancer. International Journal of Group Psychotherapy, 48, 245273.Google Scholar
Lieblich, A., Tuval-Mashiach, R. & Zilber, T. (1988). Narrative Research: Reading, Analysis and Interpretation. Thousand Oaks, CA: Sage Publications.Google Scholar
Mattingly, C. & Garro, L.C. (2000). Narrative and the Cultural Construction of Illness and Healing. Berkeley: University of California Press.Google Scholar
McClement, S., Chochinov, H.M., Hack, T., et al. (2007). Dignity therapy: Family members perspectives. Journal of Palliative Medicine, 10, 10761082.Google Scholar
Moustakas, C. (1961). Loneliness. Englewood Cliffs: Prentice Hall.Google Scholar
NCCN Clinical Practice Oncology Forum a Teleinterview. (2012). Communicating with cancer patients: when the news is bad. http://www.mdanderson.org/education-and-research/resources-for-professionals/professional-educational-resources/i-care/index.html (Accessed October 2, 2012).Google Scholar
NCI Office of Cancer Survivorship Data. (2010). Spirituality in Cancer Care. http://cancercontrol.cancer.gov/ocs/prevalence/index.html (Accessed January 2, 2010).Google Scholar
Riessman, C.K. (2008). Narrative Methods for the Human Sciences. Thousand Oaks: Sage Publications.Google Scholar
Spiegel, D., Butler, L.D., Giese-Davis, J., et al. (2007). Effects of supportive-expressive group therapy on survival of patients with metastatic breast cancer: A randomized prospective trial. Cancer, 110, 11301138.Google Scholar
Suchman, A.L. (2006). A new theoretical foundation for relationship-centered care: Complex responsive processes of relating. Journal of General Internal Medicine, doi:10.1111/j.1525-1497.2006.00308.x.Google Scholar
Ventegodt, S., Morad, M., Hyam, E., et al. (2004). Clinical holistic medicine: Induction of spontaneous remission of cancer by recovery of the human character and the purpose of life (the life mission). Science World Journal, 4, 362377.Google Scholar