Hostname: page-component-586b7cd67f-tf8b9 Total loading time: 0 Render date: 2024-11-22T20:18:26.006Z Has data issue: false hasContentIssue false
  • English
  • Français

Experiences of truth disclosure in terminally ill cancer patients in palliative home care

Published online by Cambridge University Press:  04 May 2011

Maria Friedrichsen ,
Ann Lindholm  and
Anna Milberg
Maria Friedrichsen*
Affiliation:
Palliative Education and Research Center, The County of Östergötland, Vrinnevi Hospital, Norrköping, Sweden Department of Social & Welfare Studies, Linköping University, Linköping, Sweden Research and Development Department, Stockholms Sjukhem Foundation, Stockholm, Sweden
Ann Lindholm
Affiliation:
Research and Development Department, Stockholms Sjukhem Foundation, Stockholm, Sweden
Anna Milberg
Affiliation:
Department of Social & Welfare Studies, Linköping University, Linköping, Sweden Unit of Palliative Care, University Hospital, Linköping, Sweden
*
Address correspondence and reprint requests to: Maria Friedrichsen, Palliative Education and Research Centre in the County of Östergötland, Vrinnevi Hospital, 601 82 Norrköping, Sweden. E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

The aim of this study was to explore the experiences and preferences of terminally ill cancer patients regarding truth telling in the communication of poor prognoses.

Method:

We recorded and transcribed interviews with 45 patients who knew their cancer was terminal, and analyzed their responses hermeneutically.

Results:

Patients identified three different modes of truth: (1) the absolute objective truth that they are dying; (2) the partial truth about their condition including some facts but not all of the details; and (3) the desired truth, originating in the patient's own beliefs about a healthy or better life. Coping strategies were related to patients’ preferred mode of truth: (1) facing the truth in order to take action; (2) facing some parts of the truth in order to maintain hope; and (3) hovering between facing and avoiding the truth. In their struggle for existential survival, patients used different coping strategies, changing from one to another depending upon the circumstances.

Significance of results:

Varying use of different coping strategies impacts on patient preferences concerning communication about bad news with their doctors. Truth-telling entails more than merely providing information related to the forthcoming death. It also concerns how physicians or other healthcare staff can support the patient's existential survival by fine-tuning the communication of “truth” according to the individuals’ preferences.

Type
Original Articles
Information
Palliative & Supportive Care , Volume 9 , Issue 2 , June 2011 , pp. 173 - 180
Copyright
Copyright © Cambridge University Press 2011

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

Butow, P.N., Dowsett, S., Hagerty, R., et al. (2002). Communicating prognosis to patients with metastatic disease: What do they really want to know? Support Care Cancer, 10, 161–168.CrossRefGoogle ScholarPubMed
Clayton, J., Butow, P. & Tattersall, M. (2007a). Randomized controlled trial of a prompt list to help advanced cancer patients and their caregivers to ask questions about prognosis and end-of-life care. Journal of Clinical Oncology, 25, 715–723.CrossRefGoogle ScholarPubMed
Clayton, J., Hancock, K., Butow, P., et al. (2007b). Clinical practice guidelines for communicating prognosis and end-of-life issues with adults in the advanced stage of a life-limiting illness, and their caregivers. The Medical Journal of Australia, 186, S77–S108.CrossRefGoogle ScholarPubMed
Clayton, J.M., Butow, P.N., Arnold, R.M., et al. (2005a). Discussing life expectancy with terminally ill cancer patients and their carers: A qualitative study. Support Care Cancer, 13, 733–742.CrossRefGoogle ScholarPubMed
Clayton, J.M., Butow, P.N., Arnold, R.M., et al. (2005b). 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., Butow, P.N. & Tattersall, M.H. (2005c). The needs of terminally ill cancer patients versus those of caregivers for information regarding prognosis and end-of-life issues. Cancer, 103, 1957–1964.CrossRefGoogle ScholarPubMed
Costantini, M., Morasso, G., Montella, M., et al. (2006). Diagnosis and prognosis disclosure among cancer patients. Results from an Italian mortality follow-back survey. Annals of Oncology, 17, 853–859.CrossRefGoogle ScholarPubMed
Costello, J. (2000). Truth telling and the dying patient: A conspiracy of silence? International Journal of Palliative Nursing, 6, 398–405.CrossRefGoogle Scholar
Eggly, S., Penner, L.A., Greene, M., et al. (2006). Information seeking during “bad news” oncology interactions: Question asking by patients and their companions. Social Science & Medicine, 63, 2974–2985.CrossRefGoogle ScholarPubMed
Friedrichsen, M. & Milberg, A. (2006). Concerns about losing control when breaking bad news to terminally ill patients with cancer: Physicians' perspective. Journal of Palliative Medicine, 9, 673–682.CrossRefGoogle ScholarPubMed
Friedrichsen, M. & Strang, P. (2003). Doctors' strategies when breaking bad news to terminally ill cancer patients. Journal of Palliative Medicine, 6, 565–574.CrossRefGoogle Scholar
Friedrichsen, M.J., Strang, P.M. & Carlsson, M.E. (2002). Cancer patients' interpretations of verbal expressions when given information about ending cancer treatment. Palliative Medicine, 16, 323–330.CrossRefGoogle ScholarPubMed
Georgaki, S., Kalaidopoulou, O., Liarmakopoulos, I., et al. (2002). Nurses' attitudes toward truthful communication with patients with cancer. A Greek study. Cancer Nursing, 25, 436–441.CrossRefGoogle Scholar
Glaser, B. & Strauss, A. (1965). Awareness of Dying. Chicago: Aldine.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.CrossRefGoogle ScholarPubMed
Hagerty, R.G., Butow, P.N., Ellis, P.A., et al. (2004). Cancer patient preferences for communication of prognosis in the metastatic setting. Journal of Clinical Oncology, 22, 1721–1730.CrossRefGoogle ScholarPubMed
Hagerty, R.G., Butow, P.N., Ellis, P.M., et al. (2005). Communicating with realism and hope: Incurable cancer patients' views on the disclosure of prognosis. Journal of Clinical Oncology, 23, 1278–1288.CrossRefGoogle ScholarPubMed
Hancock, K., Clayton, J.M., Parker, S.M., et al. (2007). Discrepant perceptions about end-of-life communication: A systematic review. Journal of Pain and Symptom Management, 34, 190–200.CrossRefGoogle ScholarPubMed
Jiang, Y., Li, J.Y., Liu, C., et al. (2006). Different attitudes of oncology clinicians toward truth telling of different stages of cancer. Support Care Cancer, 14, 1119–1125.CrossRefGoogle ScholarPubMed
Jiang, Y., Liu, C., Li, J.Y., et al. (2007). Different attitudes of Chinese patients and their families toward truth telling of different stages of cancer. Psychooncology, 16, 928–936.CrossRefGoogle ScholarPubMed
Kostopoulou, V. & Katsouyanni, K. (2006). The truth-telling issue and changes in lifestyle in patients with cancer. Journal of Medical Ethics, 32, 693–697.CrossRefGoogle ScholarPubMed
Kvale, S. (1996). Interviews-An Introduction to Qualitative Research Interviewing. London: SAGE Publications.Google Scholar
Lorensen, M., Davis, A.J., Konishi, E., et al. (2003). Ethical issues after the disclosure of a terminal illness: Danish and Norwegian hospice nurses' reflections. Nursing Ethics, 10, 175–185.CrossRefGoogle ScholarPubMed
Mak, Y. & Elwyn, G. (2003). Use of hermeneutic research in understanding the meaning of desire for euthanasia. Palliative Medicine, 17, 395–402.CrossRefGoogle ScholarPubMed
Malterud, K. (2001). Qualitative research: Standards, challenges, and guidelines. Lancet, 358, 483–488.CrossRefGoogle ScholarPubMed
Miyata, H., Takahashi, M., Saito, T., et al. (2005). Disclosure preferences regarding cancer diagnosis and prognosis: to tell or not to tell? Journal of Medical Ethics, 31, 447–451.CrossRefGoogle ScholarPubMed
Novack, D.H., Plumer, R., Smith, R.L., et al. (1979). Changes in physicians' attitudes toward telling the cancer patient. Journal of the American Medical Association, 241, 897–900.CrossRefGoogle ScholarPubMed
Ödman, P. (1994). Tolkning, förståelse, vetande. Stockholm: AWE/Gebers.Google Scholar
Ozdogan, M., Samur, M., Artac, M., et al. (2006). Factors related to truth-telling practice of physicians treating patients with cancer in Turkey. Journal of Palliative Medicine, 9, 1114–1119.CrossRefGoogle ScholarPubMed
Patton, M. (2002). Qualitative Evaluation and Research Methods (3rd ed.). Thousand Oaks: Sage Publications.Google Scholar
Rodriguez, K.L., Gambino, F.J., Butow, P.N., et al. (2007). ‘It's going to shorten your life’: framing of oncologist-patient communication about prognosis. Psychooncology, 17, 219–2250.CrossRefGoogle Scholar
Salander, P., Bergenheim, A., Bergström, P., et al. (1998). How to tell cancer patients: A contribution to a theory of communicating the diagnosis. Journal of Psychosocial Oncology, 16, 79–93.CrossRefGoogle Scholar
Schofield, P.E., Beeney, L. J., Thompson, J.F., et al. (2001). Hearing the bad news of a cancer diagnosis: The Australian melanoma patient's perspective. Annals of Oncology, 12, 365–371.CrossRefGoogle ScholarPubMed
Schroepfer, T.A. (2007). Critical events in the dying process: the potential for physical and psychosocial suffering. Journal of Palliative Medicine, 10, 136–147.CrossRefGoogle ScholarPubMed
Stroebe, M. & Schut, H. (1999). The dual process model of coping with bereavement: rationale and description. Death Studies, 23, 197–224.Google ScholarPubMed
Surbone, A. (2006). Telling the truth to patients with cancer: What is the truth? Lancet Oncology, 7, 944–950.CrossRefGoogle ScholarPubMed
Sveneus, F. (2000). Narrative medicine- narrative of the patient and her disease. Läkartidningen (in Swedish), 97, 3629–3632.Google Scholar
Tang, S.T., Liu, T.W., Lai, M.S., et al. (2006). Congruence of knowledge, experiences, and preferences for disclosure of diagnosis and prognosis between terminally-ill cancer patients and their family caregivers in Taiwan. Cancer Investigation, 24, 360–366.CrossRefGoogle ScholarPubMed