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Published 16 November 2009, doi:10.1136/bmj.b4362
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
1 VU 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, 2 Academic Medical Center/University of Amsterdam, Department of General Practice, Meibergdreef 15, 1105 AZ Amsterdam
Correspondence to: H R W Pasman hrw.pasman{at}vumc.nl
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had been granted or performed or had died after the request was refused by the physician or after the patient had withdrawn his or her request.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 patients 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.
The Dutch Euthanasia Act (2002) describes six requirements for due care in the performance of euthanasia.3 If the requirements are met and euthanasia is performed, the physician will not be prosecuted. One of the requirements is that the physician must be convinced that the patients suffering is unbearable, with no prospect of improvement. Unbearable suffering is not further specified in the act, but the views of the Royal Dutch Medical Association,4 the regional euthanasia review committees,3 and case law5 provide some indications: unbearable suffering is not limited to physical suffering, the suffering must at least be recognisably unbearable for the physician, and unbearable suffering is subjective. It is crucial to consider the patients personal judgment in the assessment of unbearable suffering.
The first and third aspect correspond with Cassells concept of suffering.6 He defined suffering as the state of severe distress associated with challenges that threaten the intactness of the person. Thus, suffering is experienced by an individual and occurs when an impending damage of the person is perceived by that individual. This damage, or loss, can occur in different aspects of personhood, such as the persons history, his or her cultural and societal attachments, the roles of the person, a persons perceived or desired future, and the spiritual life of the person. According to Cassell, the only way to know whether suffering is present is to ask the person. One reason why physicians misunderstand the nature of suffering is medicines traditional mind-body dichotomy. In this dichotomy, suffering can either be related to the mind, in which case it is regarded as subjective and not truly "real" and possibly placed outside the domain of medicine or it can be seen as primarily related to the body and, from there, as exclusively related to bodily pain.6
The Dutch euthanasia law requires that physicians, as attending physician or consultant, assess the patients suffering and whether it is unbearable. Acknowledging Cassells concept of suffering and the importance of looking at the whole person, both mind and body, a framework was designed for the training in formal consultation in the context of euthanasia requests in the Netherlands.7 This framework consists of different aspects of suffering: one part of the description is empirical, focusing on observable items and descriptions of personality, biography, and environment; the other part is the hermeneutic aspect, focusing on what each of these aspects means to a patient and how each aspect contributes to unbearability.
In view of the above described complexity of the concept of suffering, it is not surprising that the most debated requirement for due care is that the physician has to be convinced that the suffering of the patient is unbearable. Physicians say it is the most difficult requirement to form a judgment on.1 Doubts about the presence of unbearable suffering are also the most frequently mentioned reason given by physicians for refusing a request or feeling reluctant to grant a request.2 8 Anecdotal evidence shows that patients whose request for euthanasia is refused feel that the physician did not understand their suffering.9 We explored how patients who requested euthanasia and physicians describe and understand the patients suffering. Better understanding of this can help the discussion about the extent to which professional and judicial concepts of unbearable suffering apply in practice. We examined how patients whose request for euthanasia was not granted or performed described their suffering and how their physicians assessed suffering in those specific cases, and how they describe unbearable suffering in general.
We selected respondents for the present interview study on the basis of these two questions, combined with data on sex and the health status of the respondent (terminal illness, chronic illness, no physical illness) because we expected differences in (degree of) suffering in patient with different illnesses. We were interested in cases in which euthanasia was not performed as we know that doubts about the degree of suffering are often mentioned as the reason for physicians to refuse a request.2 8 We also included cases with different reasons why the request was not granted or performed as we expected that perspectives on suffering could vary according to the reason for not granting or performing euthanasia.
Interviews
We interviewed 10 patients, eight of whom gave us consent to approach their physician (one patient had two physicians to whom she had addressed a request for euthanasia), and we interviewed eight of the nine physicians of these patients (one physician refused because of lack of time). We also interviewed eight physicians about seven different patients who had asked for 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 request. We recruited these eight physicians through respondents in the cohort study who had stated that their relative had requested euthanasia but that the request had not been granted or granted but not performed.
The interviews took place from December 2005 to September 2007. We interviewed the patients in their home for 60-120 minutes and the physicians in their office for 30-60 minutes.
We used interview topic lists based on the objectives of the study. Lists for both the patients and the physicians included the current situation of the patient, including suffering, the situation of the patient at the time of the request, reasons for asking euthanasia, and reasons why euthanasia was not granted or performed. Patients and physicians were asked not only to describe the suffering in their specific case but also how they would describe unbearable suffering in general. We started the interviews with patients with a general question about their current situation and their request for euthanasia. We started the interviews with physicians with a general question about the patients request. Further questions were based on what the respondents said. At the end of the interview the researcher checked whether all topics had been covered.10
Data analysis
We analysed data from the interviews with the 10 patients and the 16 physicians, covering 17 different cases. All interviews were recorded and fully transcribed. As our study was explorative, not theoretical, we used open, not axial or selective coding, as described by Strauss and Corbin.11 We read the transcripts of the interviews several times and categorised them into similar subject areas using inductive coding. Examples of codes are degree of suffering, nature of suffering (physical and non-physical), relation to daily activities or behaviour, and relation to a patients biography. Two researchers (HRWP and BOP) carried out this coding process and generated the list of codes that was discussed with the other researchers. In the course of the sequential analysis,11 we noticed similarities between our results and Cassells concept of suffering. We started to use Cassells concept as an analytical framework, and, in the further analyses, we focused on whether suffering was related to body, mind, or the whole person (and to which aspects of the person). Our preliminary findings were discussed with the research advisory committee, which included practising physicians with experience in dealing with requests for euthanasia.
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Considering suffering to be unbearable
Some patients explicitly stated that their suffering was unbearable, while others said that they did suffer unbearably but not all the time or said that their suffering was severe but questioned whether it was unbearable. Whether or not patients considered their suffering to be unbearable, they all had a lasting death wish. The physicians also did not call all suffering unbearable, and the perspectives of the patient and the physician were similar in most of the cases in which both perspectives had been described.
Coherence, as considered by the physician, seemed to play an important role in assessing the severity of the suffering. In some cases the physician thought that the suffering was not unbearable because the patient behaved in a way that the physician did not think was compatible with unbearable suffering. For instance, one physician said that the patient was still reading books and therefore seemed not to be suffering unbearably. However, the patient said about her reason for reading: "But its only that I try to fill in the time, by what I call eating up letters." Another physician stated that the patient was still able to ride a bicycle, which he saw as incompatible with a serious wish to die. A third physician said that the patient still managed to live more or less independently, while the patient said that he carried on with his life for his family. "Youd rather stay in bed, but then you think I cant do that because there are visitors coming, or theres help coming, or I have to do something, so come on lazy bones, get up . . . I make myself do that for others."
Is unbearable suffering physical suffering?
Most of the patients mentioned pain as an element of their suffering, but this was not the only cause, and the pain did not make their suffering unbearable. For the patients themselves, the suffering seemed to mainly consist of non-physical suffering, such as (fear of) dependence, no longer being able to participate in normal daily life, or mental suffering because of deterioration (box 1).
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For the physicians, physical suffering and, in particular, (severe) pain seemed to be a more important element of suffering. In cases in which the physician thought that the patients suffering was unbearable (see the first quote in box 2), the physicians described the suffering as severe pain and chronic fatigue. Moreover, in their description of unbearable suffering in general, about half of the interviewed physicians mentioned physical suffering or said that it is easier to define the suffering as unbearable if it is physical (box 2).
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Empathising with the patients suffering is not enough
Most of the physicians could understand that their patient wanted to die. Some physicians said that they would, perhaps, also have wanted to die if they were in a similar situation. For most of the physicians, however, empathy with or understanding of the death wish was not enough to persuade them to grant the request for euthanasia (box 3).
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Is unbearable suffering subjective?
Several patients thought that certain situations (such as having a stoma or becoming dependent) would be unacceptable and therefore unbearable for them, whereas similar situations might well be acceptable for other patients. Some of the physicians also thought that unbearable suffering is subjective: what is bearable for one patient can be unbearable for another patient. Some physicians, however, thought otherwise (box 4).
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Strengths and weaknesses of the study
We looked at unbearable suffering from different perspectives. Previous studies have asked physicians about the suffering of their patients who requested euthanasia.1 2 8 12 One limitation of our study is that we looked only at cases in which a request for euthanasia had not been granted or granted but not performed (about two thirds of all requests), and the perspectives of patients and physicians with regard to unbearable suffering might be different in cases where euthanasia was performed—for instance, showing more agreement between patients and physicians. We do not think that the source of selection of respondents (people with an advance directive) caused selection bias as most people who request euthanasia (around 93%) have an advance euthanasia directive.1 12
Nature of suffering
When patients describe unbearable suffering they look at various aspects of personhood, and physical suffering is not the main factor. Physicians in our study, however, defined unbearable suffering more often as physical suffering. This confirms Cassells notion that, in medicine, suffering is generally related to the body and not to the mind.6 In the context of euthanasia, the difference can also be influenced by the different interests of patients and physicians: patients want euthanasia and physicians want certainty about the legal aspects. It is possible that physicians therefore use a rather strict definition of unbearable suffering as being physical suffering. Furthermore, physical suffering is probably the most apparent and recognisable suffering, and physicians might be most familiar with this physical domain. This difference in perspective can be problematic for patients who request euthanasia as it is a requirement that the physician must at least recognise that the suffering is unbearable for the patient.
Outside of the euthanasia context, Baines and Norlander13 indicated from their study among 92 patients in a hospice that these patients viewed pain and suffering as separate entities. More patients experienced suffering than pain. Patients suffered, for instance, because of loss of enjoyment of life or concerns for loved ones. Although we asked the physicians in our study how they defined unbearable suffering in general, we asked it within an interview about euthanasia. It is not clear how these physicians would describe suffering outside of the context of euthanasia, but when this is similar and primarily seen as physical suffering, patients non-physical suffering in general might not be recognised or underestimated and consequently might be undertreated.
Suffering is subjective
In legal euthanasia proceedings, unbearable suffering is considered to be subjective, thus tied to a subjects experience of suffering. This gives physicians the opportunity to take the personhood of the patient, such as their personal history, into consideration in their assessment of unbearable suffering. Some of the physicians in this study stated that this indeed was part of their assessment, but others did not take personhood into account; they compared the situation of the patient with that of other patients in comparable situations and could then come to the conclusion that the suffering should not be unbearable for their patient. The latter does not seem to comply with Cassells notion that the only way to find out whether someone suffers (and, we would add, the degree to which they suffer) is to ask the patient.6 Physicians also do not seem to comply with this notion when they expect congruence between behaviour and suffering as expressed by the patient.
Is unbearable suffering an applicable term in the assessment of euthanasia requests?
Some patients themselves had doubts about whether or not their suffering was unbearable or stated that their suffering was not unbearable all the time. And yet, these patients considered their suffering to be severe and clearly indicated that they had a lasting wish to die. This gives rise to the following question: how can patients, on the one hand, consider their suffering to be so severe that they no longer wish to live, but, on the other hand, not consider it to be unbearable? It is possible that patients reserve the term "unbearable" for the most extreme situations and find it unreasonable to consider their own suffering in this way.
Conclusions and implications for practice
Patients and physicians have different perspectives on the nature and extent of suffering. Physicians commonly focus on bodily suffering and seem to have a narrower perspective on unbearable suffering than patients and than Dutch case law suggests.5 Physicians should take into account the various aspects of suffering, looking beyond the body-mind dichotomy. The framework mentioned in the introduction could help physicians to achieve this. It will help them to assess suffering in the context of requests for euthanasia in a structured way, taking into account all possible aspects of suffering, and thus reduce the gap between the patients and physicians perspective of suffering. Furthermore, it can structure a conversation between the patient and physician about the suffering of the patient.
A consequence of using a broad perspective of suffering could be that physicians more often assess the suffering of a patient as unbearable. The opposite is also possible, and, taking all aspects of suffering into account, physicians could less often conclude that the suffering is unbearable for that person. In any case, with a structured way of assessing suffering the assessment will at least be more in line with the nature of suffering, more systematic, and open for discussion and evaluation. This is not only useful in discussing requests for euthanasia but also in end of life care in general.
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Cite this as: BMJ 2009;339:b4362
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.
This is an open-access article distributed under the terms of the Creative Commons Attribution Non-commercial License, which permits use, distribution, and reproduction in any medium, provided the original work is properly cited, the use is non commercial and is otherwise in compliance with the license. See: http://creativecommons.org/licenses/by-nc/2.0/ and http://creativecommons.org/licenses/by-nc/2.0/legalcode.
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