Concept of unbearable suffering in context of ungranted requests for euthanasia: qualitative interviews with patients and physiciansBMJ 2009; 339 doi: https://doi.org/10.1136/bmj.b4362 (Published 16 November 2009) Cite this as: BMJ 2009;339:b4362
- H R W Pasman, senior researcher1,
- M L Rurup, senior researcher1,
- D L Willems, professor2,
- B D Onwuteaka-Philipsen, associate professor1
- 1VU University Medical Center, EMGO Institute for Health and Care Research, Department of Public and Occupational Health, Expertise Center for Palliative Care, van der Boechorststraat 7, 1081 BT, Amsterdam, Netherlands
- 2Academic Medical Center/University of Amsterdam, Department of General Practice, Meibergdreef 15, 1105 AZ Amsterdam
- Correspondence to: H R W Pasman
- Accepted 17 July 2009
Objective To obtain in-depth information about the views of patients and physicians on suffering in patients who requested euthanasia in whom the request was not granted or granted but not performed.
Design In-depth interviews with a topic list.
Setting Patients’ homes and physicians’ offices.
Participants 10 patients who explicitly requested euthanasia but whose request was not granted or performed and eight physicians of these patients; and eight physicians of patients who had requested euthanasia but had died before the request had been granted or performed or had died after the request was refused by the physician or after the patient had withdrawn his or her request.
Results Not all patients who requested euthanasia thought their suffering was unbearable, although they had a lasting wish to die. Patients and physicians seemed to agree about this. In cases in which patients said they suffered unbearably there was less agreement about what constitutes unbearable suffering; patients put more emphasis on psychosocial suffering, such as dependence and deterioration, whereas physicians referred more often to physical suffering. In some cases the physician thought that the suffering was not unbearable because the patient’s behaviour seemed incompatible with unbearable suffering—for instance, because the patient was still reading books.
Conclusions Patients do not always think that their suffering is unbearable, even if they have a lasting wish to die. Physicians seem to have a narrower perspective on unbearable suffering than patients and than case law suggests. In an attempt to solve the problem of different perspectives, physicians should take into account the different aspects of suffering as described in the literature and a framework for assessing the suffering of patients who ask for euthanasia.
We thank all the patients and physicians who shared their experiences and opinions with us. Their contribution to the research is invaluable. We also thank G K Kimsma for his comments on the manuscript.
Contributors: BDO-P had the initial idea for this study and wrote the research proposal. HRWP and MLR undertook the interviews. HRWP and BDO-P did the coding and analyses, which was discussed with MLR and DLW. HRWP wrote the first draft. BDO-P, MLR, and DLW commented on and contributed to the final draft. BDO-P is guarantor. All contributors had access to all the data and can take responsibility for the integrity of the data and the accuracy of the data analysis
Funding: This study was supported by a grant from Right to Die-NL (NVVE) and the Pieter van Foreest Foundation. The funders approved the study design and were not involved in the collection, analysis, and interpretation of data, the writing of the report, and the decision to submit the article for publication. The researchers were independent from the funders.
Competing interests: None declared.
Ethical approval: The study protocol was approved by the Medical Ethics Committee of the VU University medical center (METC VUmc registration No 2005/82).
Data sharing: No additional data available.
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