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

Abstract
Introduction
Methods
Results
Discussion
References

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had been granted or performed or had died after the request was refused by the physician or after the patient had withdrawn his or her request.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.

Introduction

Abstract
Introduction
Methods
Results
Discussion
References

In 2005, about 8400 people in the Netherlands made an explicit request for euthanasia. Of these, about 2400 requests were granted, and euthanasia was performed.¹ In the other cases, several situations can arise: the patient dies after the request is granted but before euthanasia is performed (13% of all requests), the patient dies before the physician has made the final decision to grant or to refuse the request (13%), the patient withdraws his or her request (13%), or the physician refuses (12%).² Most of the requests are made to general practitioners (77% of all requests in 2005).¹

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 patient’s 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 patient’s personal judgment in the assessment of unbearable suffering.

The first and third aspect correspond with Cassell’s 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 person’s history, his or her cultural and societal attachments, the roles of the person, a person’s 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 medicine’s 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 patient’s suffering and whether it is unbearable. Acknowledging Cassell’s 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 patient’s 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.

Methods

Abstract
Introduction
Methods
Results
Discussion
References

Recruitment and sampling
We recruited patients from a large cohort study focusing on people with advance directives (that is, advance euthanasia directive, refusal of treatment document, durable power of attorney for health care, will to live statement). In this study, about 5000 people with one or more advance directives received a written questionnaire every 18 months. In the baseline written questionnaire of this study in 2005 we asked whether the respondent had made a request for euthanasia in the past three years and the reason why the request was not granted (that is, the request was refused by the physician or request was withdrawn by respondent). Furthermore, we asked whether the respondent had had a relative who had requested euthanasia that had not been granted or performed, and then asked why the request had not been granted or performed (for instance, patient died before euthanasia, patient died before the final decision, request had been refused by physician after which the patient had died from another cause, or request had been withdrawn by patient after which the patient had died from another cause). In total there were 51 respondents who had requested euthanasia in the past three years but the physician had refused, one respondent had withdrawn his request, and 135 respondents had known a relative who had requested euthanasia but euthanasia was not performed.

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 patient’s 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 patient’s 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 Cassell’s concept of suffering. We started to use Cassell’s 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.

Results

Abstract
Introduction
Methods
Results
Discussion
References

Characteristics of patients and physicians
The patients had various diseases and illnesses, most of them were aged over 80, and half of them were women (table).

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