Hostname: page-component-cd9895bd7-gbm5v Total loading time: 0 Render date: 2024-12-19T07:25:37.007Z Has data issue: false hasContentIssue false

How should realism and hope be combined in physician–patient communication at the end of life? An online focus-group study among participants with and without a Muslim background

Published online by Cambridge University Press:  07 November 2016

Mariska G. Oosterveld-Vlug*
Affiliation:
Department of Public and Occupational Health, EMGO Institute for Health and Care Research, Expertise Center for Palliative Care, Vrije Universiteit Medical Center, Amsterdam, The Netherlands
Anneke L. Francke
Affiliation:
Department of Public and Occupational Health, EMGO Institute for Health and Care Research, Expertise Center for Palliative Care, Vrije Universiteit Medical Center, Amsterdam, The Netherlands Netherlands Institute for Health Services Research, Utrecht, The Netherlands
H. Roeline W. Pasman
Affiliation:
Department of Public and Occupational Health, EMGO Institute for Health and Care Research, Expertise Center for Palliative Care, Vrije Universiteit Medical Center, Amsterdam, The Netherlands
Bregje D. Onwuteaka-Philipsen
Affiliation:
Department of Public and Occupational Health, EMGO Institute for Health and Care Research, Expertise Center for Palliative Care, Vrije Universiteit Medical Center, Amsterdam, The Netherlands
*
Address correspondence and reprint requests to Mariska G. Oosterveld-Vlug, VU University Medical Center, Department of Public and Occupational Health, Van der Boechorststraat 7, 1081 BT Amsterdam, The Netherlands. E-mail: [email protected] or [email protected].

Abstract

Objective:

Maintaining false hope may result in prolonged curative aggressive treatments until the very last stage of life. In this study, we sought to explore how people think that realistic and hopeful information should best be combined in physician–patient communications at the end of life.

Method:

During a period of 15 days, participants of five online focus groups (OFGs) could log in onto a closed discussion site and offer responses to several topics. A variety of people participated: patients, older people, relatives, and healthcare professionals with and without a Muslim background. Participants with a Muslim background constituted a separate group, because previous research indicated that they might have distinct views on good end-of-life care and communication. Transcripts were analyzed following the principles of thematic analysis.

Results:

Participants from all focus groups preferred that physicians provide realistic information in an empathic way, stating that the patient would never be left on his own and that withholding curative treatment was not equal to withholding care, explicitly asking how the patient could be helped during the time remaining, and involving other professionals in the care process and communications. As such, physicians could support patients' transition from “hope for a cure” to “hope for a good death.” Muslims specified the way they wished to receive realistic information: first from a relative, and not by using the term “incurable illness,” but rather by informing the patient that they had no remaining curative treatments available.

Significance of results:

Realism and hope are not necessarily mutually exclusive and can be combined when providing realistic information in a delicate and culturally sensitive way. This study provides suggestions on how physicians can do so. Communication skills training as well as anchoring knowledge of the diversity of cultural and religious views into physicians' education could improve end-of-life communication.

Type
Original Articles
Copyright
Copyright © Cambridge University Press 2016 

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

Back, A.L., Arnold, R.M. & Quill, T.E. (2003). Hope for the best, and prepare for the worst. Annals of Internal Medicine, 138(5), 439443. Available from http://annals.org/article.aspx?articleid=716134.Google Scholar
Benzein, E., Norberg, A. & Saveman, B. (2001). The meaning of the lived experience of hope in patients with cancer in palliative home care. Palliative Medicine, 15(2), 117126.Google Scholar
Boyatzis, R.E. (1998). Transforming qualitative information: Thematic analysis and code development. Thousand Oaks, CA: Sage.Google Scholar
Buiting, H.M., Rurup, M.L., Wijsbek, H., et al. (2011). Understanding provision of chemotherapy to patients with end stage cancer: Qualitative interview study. BMJ, 342, d1933. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3070432/.Google Scholar
Chen, A.B., Cronin, A., Weeks, J.C., et al. (2013). Expectations about the effectiveness of radiation therapy among patients with incurable lung cancer. Journal of Clinical Oncology, 31(21), 27302735. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3709058/.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(9), 19651975. Available from http://onlinelibrary.wiley.com/doi/10.1002/cncr.21011/full.Google Scholar
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(8), 641659.CrossRefGoogle ScholarPubMed
Curtis, J.R., Wenrich, M.D., Carline, J.D., et al. (2002). Patients' perspectives on physician skill in end-of-life care: Differences between patients with COPD, cancer and AIDS. Chest, 122(2), 356362.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(4), 610620.Google Scholar
de Graaff, F.M., Francke, A.L., van den Muijsenbergh, M.E.T.C., et al. (2010). “Palliative care”: A contradiction in terms? A qualitative study of cancer patients with a Turkish or Moroccan background, their relatives and care providers. BMC Palliative Care, 9, 19. Epub ahead of print Sep 10. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2944252/.Google Scholar
de Graaff, F.M., Mistiaen, P., Devillé, W.L., et al. (2012 a). Perspectives on care and communication involving incurably ill Turkish and Moroccan patients, relatives and professionals: A systematic literature review. BMC Palliative Care, 11(1), 17. Available from http://dare.uva.nl/document/2/102630.Google Scholar
de Graaff, F.M., Francke, A.L., van den Muijsenbergh, M.E.T.C., et al. (2012 b). Talking in triads: Communication with Turkish and Moroccan immigrants in the palliative phase of cancer. Journal of Clinical Nursing, 21(21–22), 31433152.Google Scholar
de Haes, H. & Koedoot, N. (2003). Patient-centered decision making in palliative cancer treatment: A world of paradoxes. Patient Education and Counseling, 50(1), 4349.Google Scholar
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(6), 12781288. Available from http://jco.ascopubs.org/content/23/6/1278.long.Google Scholar
KNMG (Royal Dutch Medical Association), Stuurgroep Passende zorg in de laatste Levensfase (2015). Rapport: Niet alles wat kan, hoeft [Report: Not everything possible needs to be done] [in Dutch]. Utrecht, The Netherlands: KNMG.Google Scholar
Lin, H.R. & Bauer-Wu, S.M. (2004). Psycho-spiritual well-being in patients with advanced cancer: An integrative review of the literature. Journal of Advanced Nursing, 44(1), 6980.Google Scholar
Mattes, M.D. & Sloane, M.A. (2015). Reflections on hope and its implications for end-of-life care. Journal of the American Geriatrics Society, 63(5), 993996. Epub ahead of print May 4.Google Scholar
McClement, S.E. & Chochinov, H.M. (2008). Hope in advanced cancer patients. European Journal of Cancer, 44(8), 11691174. Epub ahead of print Mar 21.Google Scholar
Oksüzoğlu, B., Abali, H., Bakar, M., et al. (2006). Disclosure of cancer diagnosis to patients and their relatives in Turkey: Views of accompanying persons and influential factors in reaching those views. Tumori, 92(1), 6266.Google Scholar
Olsman, E., Leget, C., Onwuteaka-Philipsen, B.D., et al. (2014). Should palliative care patients' hope be truthful, helpful or valuable? An interpretative synthesis of literature describing healthcare professionals' perspectives on hope of palliative care patients. Palliative Medicine, 28(1), 5970. Epub ahead of print Apr 15, 2013.Google Scholar
Olsman, E., Willems, D.L. & Leget, C. (2015). Solicitude: Balancing compassion and empowerment in a relational ethics of hope. An empirical–ethical study in palliative care. Medicine, Health Care, and Philosophy, 19(1), 1120. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4805712/.Google Scholar
Olver, I.N. (2005). Bioethical implications of hope. In Interdisciplinary perspectives on hope. Elliott, J. (ed.), pp. 241256. New York: Nova Science.Google Scholar
Ozdogan, M., Samur, M., Bozcuk, H.S., et al. (2004). “Do not tell”: What factors affect relatives' attitudes to honest disclosure of diagnosis to cancer patients? Supportive Care in Cancer, 12(7), 497502. Epub ahead of print Apr 16.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(5), 11141119.Google Scholar
Pattison, N.A. & Lee, C. (2011). Hope against hope in cancer at the end of life. Journal of Religion and Health, 50(3), 731742. Epub ahead of print Jun 16, 2009.Google Scholar
Robinson, C.A. (2012). “Our best hope is a cure”: Hope in the context of advance care planning. Palliative & Supportive Care, 10(2), 7582. Epub ahead of print Feb 24.Google Scholar
Rustoen, T. (1995). Hope and quality of life, two central issues for cancer patients: A theoretical analysis. Cancer Nursing, 8(5), 355361.Google Scholar
Spiegel, W., Zidek, T., Maier, M., et al. (2009). Breaking bad news to cancer patients: Survey and analysis. Psycho-Oncology, 18(2), 179186. Epub ahead of print Aug 1, 2008.Google Scholar
Tates, K., Zwaanswijk, M., Otten, R., et al. (2009). Online focus groups as a tool to collect data in hard-to-include populations: Examples from paediatric oncology. BMC Medical Research Methodology, 9, 15. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2653071/.Google Scholar
van Vliet, L.M. (2013). Balancing explicit with general information and realism with hope: Communication at the transition to palliative breast cancer care. Doctoral dissertation. Utrecht, The Netherlands: Netherlands Institute for Health Services Research.Google Scholar
van Vliet, L., Francke, A., Tomson, S., et al. (2013). When cure is no option: How explicit and hopeful information can be given? A qualitative study in breast cancer. Patient Education and Counseling, 90(3), 315322. Epub ahead of print May 8, 2013.Google Scholar
Weeks, J.C., Catalano, P.J., Cronin, A., et al. (2012). Patients' expectations about effects of chemotherapy of advanced cancer. The New England Journal of Medicine, 367(17), 16161625. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3613151/.Google Scholar
Zwaanswijk, M. & van Dulmen, S. (2014). Advantages of asynchronous online focus groups and face-to-face focus groups as perceived by child, adolescent and adult participants: A survey study. BMC Research Notes, 7, 756. Available from http://bmcresnotes.biomedcentral.com/articles/10.1186/1756-0500-7-756.Google Scholar