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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 

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