Hostname: page-component-76fb5796d-x4r87 Total loading time: 0 Render date: 2024-04-26T14:58:21.230Z Has data issue: false hasContentIssue false
  • English
  • Français

“Our best hope is a cure.” Hope in the context of advance care planning

Published online by Cambridge University Press:  24 February 2012

Carole A. Robinson
Carole A. Robinson*
Affiliation:
School of Nursing, Faculty of Health and Social Development, University of British Columbia Okanagan, Kelowna, British Columbia, Canada
*
Address correspondence and reprint requests to: Carole A. Robinson, School of Nursing, Faculty of Health and Social Development, University of British Columbia Okanagan, 3333 University Way, Kelowna BC, V1V 1V7Canada. E-mail: carole.robinson@ubc.ca
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

Advance care planning (ACP) has the potential to enhance end-of-life care, yet often fails to live up to that potential. This qualitative interpretive study was designed to explore the process and outcomes of ACP using the patient-centered Advance Care Planning Interview (PC-ACP) developed by the Respecting Choices® program in Wisconsin.

Method:

Patients diagnosed with advanced lung cancer and close family members were recruited. Nine family dyads participated in the PC-ACP interview, which was audio-recorded. Follow-up interviews took place 3 and 6 months after the PC-ACP interview and were also recorded. Thematic analysis was conducted on transcribed interviews using constant comparison.

Results:

Analysis showed that hope was a significant theme in the ACP process and this article reports on that theme. Hope for a cure was one of many hopes that supported quality of life for the participant dyads. Three themes were identified: hope is multifaceted, hope for a cure is well considered, and hope is resilient and persistent. The seeming paradox of hoping for a cure of an incurable cancer did not interfere with the process of ACP. The dyads engaged in explicit discussions of end-of-life scenarios and preferences for care. ACP did not interfere with hope and hope for a cure did not interfere with ACP.

Significance of results:

Concerns about false hope are called into question. The principle of honoring hope is not necessarily in conflict with the principle of truthful communication. This is clinically significant, as the findings suggest we need not disrupt hope that we think of as “unrealistic” as long as it supports the family to live well. Further, ACP can be successful even in the context of hoping for a cure.

Keywords

ACPHopeFalse hopeAdvanced cancerTerminal illness
Type
Original Articles
Information
Palliative & Supportive Care , Volume 10 , Issue 2 , June 2012 , pp. 75 - 82
Copyright
Copyright © Cambridge University Press 2012

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

Altekruse, S.F., Kosary, C.L., Krapcho, M. et al. , eds. (2010). SEER Cancer Statistics Review, 1975–2007. http://seer.cancer.gov/csr/1975_2007/Google Scholar
Apatira, L., Boyd, E.A., Malvar, G., et al. (2008). Hope, truth, and preparing for death: Perspectives of surrogate decision makers. Annals of Internal Medicine, 149, 861–868.CrossRefGoogle ScholarPubMed
Back, A.L., Arnold, R.M. & Quill, T.E. (2003). Hope for the best, and prepare for the worst. Annals of Internal Medicine, 138, 439–443.Google Scholar
Barnes, K., Jones, L., Tookman, A., et al. (2007). Acceptability of an advance care planning interview schedule: A focus group study. Palliative Medicine, 21, 23–28.CrossRefGoogle ScholarPubMed
Benzein, E., Norberg, A. & Saveman, B.-I. (2001). The meaning of the lived experience of hope in patients with cancer in palliative home care. Palliative Medicine, 15, 117–126.Google Scholar
Benzein, E.G. & Saveman, B.-I. (2008). Health-promoting conversations about hope and suffering with couples in palliative care. International Journal of Palliative Nursing, 14, 439–445.Google ScholarPubMed
Berendes, D., Keefe, F.J., Somers, T.J., et al. (2010). Hope in the context of lung cancer: Relationships of hope to symptoms and psychological distress. Journal of Pain and Symptom Management, 40, 174–182.CrossRefGoogle Scholar
Breathnach, O.S., Freidlin, B., Conley, B., et al. (2001). Twenty-two years of phase III trials for patients with advanced non-small-cell lung cancer: Sobering results. Journal of Clinical Oncology, 19, 1734–1742.Google Scholar
Briggs, L. (2003). Shifting the focus of advance care planning: Using an in-depth interview to build and strengthen relationships. www.edc.org/lastacts.Google Scholar
Briggs, L.A., Kirchhoff, K.T., Hammes, B.J., et al. (2004). Patient-centered advance care planning in special patient populations: A pilot study. Journal of Professional Nursing, 20, 47–58.CrossRefGoogle ScholarPubMed
Chi, G.C-H-L. (2007). The role of hope in patients with cancer. Oncology Nursing Forum, 34, 415–424.Google Scholar
Clayton, J.M., Butow, P.N., Arnold, R.M., et al. (2005). Fostering coping and nurturing hope when discussing the future with terminally ill cancer patients and their caregivers. Cancer, 103, 1965–1975.CrossRefGoogle ScholarPubMed
Clayton, J.M., Hancock, K., Parker, S., et al. (2008). Sustaining hope when communicating with terminally ill patients and their families: A systematic review. Psycho-Oncology, 17, 641–659.Google Scholar
Curtis, J.R., Engelberg, R., Young, J.P., et al. (2008). An approach to understanding the interaction of hope and desire for explicit prognostic information among individuals with severe chronic obstructive pulmonary disease or advanced cancer. Journal of Palliative Medicine, 11, 610–620.Google Scholar
Daugherty, C.K. (2004). Examining ethical dilemmas as obstacles to hospice and palliative care for advanced cancer patients. Cancer Investigation, 22, 123–131.CrossRefGoogle ScholarPubMed
Duggleby, W., Holtslander, L., Kylma, J., et al. (2010). Metasynthesis of the hope experience of family caregivers of persons with chronic illness. Qualitative Health Research, 20, 148–158.Google Scholar
Eliott, J. & Olver, I. (2002). The discursive properties of “hope”: A qualitative analysis of cancer patients' speech. Qualitative Health Research, 12, 173–193.CrossRefGoogle Scholar
Eliott, J.A. & Olver, I.N. (2007). Hope and hoping in the talk of dying cancer patients. Social Science & Medicine, 64, 138–149.Google Scholar
Field, D. & Copp, G. (1999). Communication and awareness about dying in the 1990s. Palliative Medicine, 13, 459–468.CrossRefGoogle ScholarPubMed
Frank, A. (1998). Just listening: Narrative and deep illness. Families, Systems & Health, 16, 197–212.CrossRefGoogle Scholar
Garrard, E. & Wrigley, A. (2009). Hope and terminal illness: False hope versus absolute hope. Clinical Ethics, 4, 38–43.Google Scholar
Glaser, B.G. & Strauss, A. (1967). The Discovery of Grounded Theory: Strategies for Qualitative Research. New York: Aldine Publishing Company.Google Scholar
Gordon, E.J. & Daugherty, C.K. (2003). “Hitting you over the head”: Oncologists' disclosure of prognosis to advanced cancer patients. Bioethics, 17, 142–168.Google Scholar
Innes, S. & Payne, S. (2009). Advanced cancer patients' prognostic information preferences: A review. Palliative Medicine, 23, 29–39,CrossRefGoogle ScholarPubMed
Kirk, P., Kirk, I. & Kristjanson, L.J. (2004). What do patients receiving palliative care for cancer and their families want to be told? A Canadian and Australian qualitative study. British Medical Journal, 328, 1343–1347.CrossRefGoogle ScholarPubMed
Kwon, P. (2002). Hope, defense mechanisms, and adjustment: Implications for false hope and defensive hopelessness. Journal of Personality, 70, 207–231.CrossRefGoogle ScholarPubMed
Lin, H. & Bauer-Wu, S.M. (2003). Psycho-spiritual well-being in patients with advanced cancer: An integrative review of the literature. Journal of Advanced Nursing, 44, 69–80.Google Scholar
Links, M. & Kramer, J. (1994). Breaking bad news: Realistic versus unrealistic hopes. Supportive Care in Cancer, 2, 91–93.Google Scholar
McClement, S.E. & Chochinov, H.M. (2008). Hope in advanced cancer patients. European Journal of Cancer, 44, 1169–1174.Google Scholar
Miller, J.F. (2007). Hope: A construct central to nursing. Nursing Forum, 42, 12–19.CrossRefGoogle Scholar
Nekolaichuk, C.L. & Bruera, E. (1998). On the nature of hope in palliative care. Journal of Palliative Care, 14, 36–42.Google Scholar
Nekolaichuk, C.L. & Bruera, E. (2004). Assessing hope at the end of life: Validation of an experience of hope scale in advanced cancer patients. Palliative and Supportive Care, 2, 243–253.CrossRefGoogle Scholar
Ngo-Metzger, Q., August, K.J., Srinivasan, M., et al. (2008). End-of-life care: Guidelines for patient-centered communication. American Family Physician, 77, 167–174.Google Scholar
Penson, R.T., Gu, F., Harris, S., et al. (2007). Hope. The Oncologist, 12, 1105–1103.CrossRefGoogle ScholarPubMed
Perakyla, A. (1991). Hope work in the care of seriously ill patients. Qualitative Health Research, 1, 407–433.Google Scholar
Renz, M., Koeberle, D., Cerny, T., et al. (2009). Between utter despair and essential hope. Journal of Clinical Oncology, 27, 146–149.CrossRefGoogle ScholarPubMed
Reynolds, M.A.H. (2008). Hope in adults, ages 20–59, with advanced stage cancer. Palliative and Supportive Care, 6, 259–264.Google Scholar
Sanatani, M., Schreier, G. & Stitt, L. (2008). Level and direction of hope in cancer patients: An exploratory longitudinal study. Supportive Care in Cancer, 16, 493–499.Google Scholar
Schulman-Green, D., McCorkle, R., Cherlin, E., et al. (2005). Nurses, communication of prognosis and implications for hospice referral: A study of nurses caring for terminally ill hospitalized patients. American Journal of Critical Care, 14, 64–70.Google Scholar
Simpson, C. (2004). When hope makes us vulnerable: A discussion of patient-healthcare provider interactions in the context of hope. Bioethics, 18, 429–447.CrossRefGoogle ScholarPubMed
Snyder, C.R., Rand, K.L., King, E.A., et al. (2002). “False” hope. Journal of Clinical Psychology, 58, 1003–1022.Google Scholar
Solnit, R. (2004). Hope in the Dark: Untold Histories, Wild Possibilities. New York: Nation Books.Google Scholar
Whitney, S.N., McCullough, L.B., Fruge, E., McGuire, A.L. & Volk, R.J. (2008). Beyond breaking bad news: The roles of hope and hopefulness. Cancer, 113, 442–445.CrossRefGoogle ScholarPubMed
Zimmermann, C. (2007). Death denial: Obstacle or instrument for palliative care? An analysis of the literature. Sociology of Health & Illness, 29, 297–314.Google Scholar