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Judgement of suffering in the case of a euthanasia request in The Netherlands
  1. J A C Rietjens1,
  2. D G van Tol2,
  3. M Schermer1,
  4. A van der Heide1
  1. 1
    Erasmus Medical Center, Rotterdam, The Netherlands
  2. 2
    University Medical CenterGroningen, Groningen, The Netherlands
  1. Dr J A C Rietjens, Erasmus Medical Center, PO Box 2040, Rotterdam, 3000 CA, The Netherlands; j.rietjens{at}erasmusmc.nl

Abstract

Introduction: In The Netherlands, physicians have to be convinced that the patient suffers unbearably and hopelessly before granting a request for euthanasia. The extent to which general practitioners (GPs), consulted physicians and members of the euthanasia review committees judge this criterion similarly was evaluated.

Methods: 300 GPs, 150 consultants and 27 members of review committees were sent a questionnaire with patient descriptions. Besides a “standard case” of a patient with physical suffering and limited life expectancy, the descriptions included cases in which the request was mainly rooted in psychosocial or existential suffering, such as fear of future suffering or dependency. For each case, respondents were asked whether they recognised the case from their own practice and whether they considered the suffering to be unbearable.

Results: The cases were recognisable for almost all respondents. For the “standard case” nearly all respondents were convinced that the patient suffered unbearably. For the other cases, GPs thought the suffering was unbearable less often (2–49%) than consultants (25–79%) and members of the euthanasia review committees (24–88%). In each group, the suffering of patients with early dementia and patients who were “tired of living” was least often considered to be unbearable.

Conclusions: When non-physical aspects of suffering are central in a euthanasia request, there is variance between and within GPs, consultants and members of the euthanasia committees in their judgement of the patient’s suffering. Possible explanations could be differences in their roles in the decision-making process, differences in experience with evaluating a euthanasia request, or differences in views regarding the permissibility of euthanasia.

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In The Netherlands, euthanasia is defined as the termination of life by the administration of drugs by a physician at the request of a patient. In past decades, the question of whether euthanasia should remain punishable has been a major subject of debate. The Act introduced in April 2002 states that physicians who perform euthanasia are no longer punishable provided they have acted according to the due care criteria and reported the patient’s death to one of the five regional euthanasia review committees.1 A review committee is multidisciplinary and consists of a legal expert who acts as the chair, a physician and an ethicist. Furthermore, every review committee is assisted by a secretary (a lawyer). Together, they assess whether the physician has proceeded in accordance with the criteria. The public prosecutor is informed only if a review committee decides that the physician did not fulfil one or more of the criteria of due care.

In 1984, the Schoonheim case was the first euthanasia case that was judged by the Dutch Supreme Court. In this case, euthanasia was performed on the explicit request of a 95-year-old patient who suffered unbearably from a combination of deteriorating eyesight, hearing and speech, as well as being bedridden, general deterioration and loss of dignity.2 The Court concluded that the physician had acted in a situation of necessity that was mainly due to the patient’s increasing prospect of loss of personal dignity, and he was acquitted. In the Chabot case (1994), the Court decided that suffering caused by psychological problems can also be unbearable. In the Brongersma case (2002) this was further specified in the sense that suffering should originate from a medically classifiable disease, either somatic or psychiatric.

Box 1 summarises the due care criteria for euthanasia. The consultation requirement serves to guarantee careful decision-making and includes a second opinion by an independent physician. Physicians, mostly practising general practitioners (GPs), who have been in practice for at least 5 years and who have relevant experience with end-of-life care, can become a consultant through successfully completing a formal training programme. The Royal Dutch Medical Association has set up this programme to train consultants in giving expert second opinions and also advice to colleagues who have questions about the procedure or the performance of euthanasia. Consultants are not allowed to perform euthanasia themselves in cases in which they perform a consultation. The due care criteria make clear that the physician has a central position in the Act. Although an explicit (well-considered and stable) request of the patient is a necessary condition for the justification of the termination of life, in the final analysis a conflict of duties (in which the necessity to relieve suffering is in conflict with the need to conserve life) is the most important criterion underlying the Act.3

Box 1 Due care criteria for euthanasia

Physicians must:

  1. be satisfied that the patient’s request is voluntary and well-considered;

  2. be satisfied that the patient’s suffering is unbearable and that there is no prospect of improvement;

  3. inform the patient about his situation and further prognosis;

  4. discuss the situation with the patient and come to the conclusion that there is no reasonable alternative;

  5. consult at least one other physician with no connection to the case, who must then see the patient and state in writing that the attending physician has satisfied the due care criteria listed in (1) to (4) above; and

  6. exercise due medical care and attention in terminating the patient’s life or assisting in his suicide.

A previous study showed that many physicians find it problematical to assess the criteria of due care.4 Problems are mostly related to the assessment of whether the patient suffered unbearably. To assess unbearability, physicians have to know how their patients experience the suffering, and there is no specific instrument to do so. What can be objectively determined is the underlying disease and the accompanying symptoms and loss of function. However, the question of whether the symptoms of suffering become unbearable, and if so when, ultimately depends on the experience of the person who is suffering, and hence is an individual matter. Suffering is determined by the patient’s personality, physical and mental perseverance, history and perceptions of the future.5 Therefore, what is still bearable to one person may be unbearable to another. Whereas some claim this makes the unbearability of suffering something a physician can hardly assess and that should mainly be left to the judgement of the patient,6 the review committees argue that suffering is at least partly open to objectification.7 It is known that in physicians’ reports to the review committees, unbearable suffering is often described in terms of “objective” physical symptoms, such as pain, nausea and dyspnoea and function loss, whereas loss of dignity or loss of autonomy are less often mentioned.4 This is in contrast with interview studies showing that the lack of perspectives of improvement or the patient’s loss of dignity are often mentioned by physicians as reasons to perform euthanasia8 or by patients to request euthanasia,9 whereas pain and other physical symptoms are less often mentioned reasons. Therefore, it may be that physicians describe the patient’s suffering in more objective physical terms in their reports to the review committees, probably because they think this is more convincing and more easily sympathised with by the review committees.

The process of evaluating a euthanasia case includes several persons with different roles. With respect to the unbearableness of suffering, the patient needs to describe his or her suffering in a convincing manner, and the physician needs to be convinced that the patient suffers unbearably. Subsequently, the consultant’s task is also to assess the suffering of the patient, based on one or more private conversations with the patient and by studying the medical files. Finally, after the euthanasia is performed, the physician and the consultant submit their report to a review committee that assesses whether or not the physician has adhered to the criteria of due care.

It is unclear whether physicians, consultants and review committees interpret and apply the due care criteria similarly. This is especially the case for the criterion of unbearable suffering, because it is formulated in such an open manner. Therefore the research questions of this study are whether there are any differences between physicians, consultants and members of the review committees in their judgements of patients’ suffering and, if there are any differences, how these differences can be explained and what they imply for medical practice and the evaluation of the current legal system. The study focuses on GPs because they most often perform euthanasia.9

METHODS

Respondents

In September 2006, written questionnaires were sent to a random sample of 300 GPs and 150 consultants. In addition, all 27 members and vice members of regional euthanasia review committees received a questionnaire. A reminder was sent to everyone who had not responded.

Questionnaire

The questionnaire consisted of eight vignettes describing patients who asked their physician for assistance in dying. In each of the vignettes, a different type of suffering was central. The contents of the different vignettes were inspired by actual reports submitted to the review committees that we studied in which the suffering of the patient was the central issue of discussion. The questionnaire was initially piloted with a limited group of physicians. Based on this pilot, the formulation of some parts of the vignettes and some questions have been altered.

For this study, we focus on seven vignettes: a “standard case”, in which a patient with a limited life expectancy suffers from severe physical symptoms; five cases describing patients with a fatal disease and distressing symptoms in which, respectively, fear of future decay, extreme dependency, perceived burden to others, early dementia and loss of dignity are central to the patients’ suffering. The last case describes a patient who is tired of living without the context of a fatal disease. This case was based on the Brongersma case.2 See box 2 for a few examples of the vignettes. For each vignette, GPs, consultants and review committee members were asked the same question: “Are you personally convinced that the patient suffers unbearably?” For the consultants, the annotation was made that they were asked the question in the context of being consulted. Answering categories were: “Yes”; “Maybe for the patient, but I don’t consider this unbearable suffering”; and “No”. It was also asked whether the respondent could imagine that this case would actually occur in his or her own clinical practice. In their answers, respondents could choose between: “Yes, and I have been involved in a similar case”; Yes, but I haven’t been involved in such a case”; and “No”. These were recoded into yes (“Yes, and I have been involved in a similar case” and “Yes, but I haven’t been involved in such a case”) and “No”. The questionnaire further addressed several characteristics of the respondents, such as age and sex and work experience as a GP, a consultant or a review committee member. Work experience was recoded into short, medium and long. For GPs, short comprised less than 10 years, medium 10–20 years and long more than 20 years; for consultants short was less than 3 years, medium 4–5 years and long more than 6–10 years; for review committee members short was 0–3 years, medium 4–6 years and long more than 7–10 years. GPs and consultants were also asked about their experience with performing euthanasia and their training in palliative care.

Box 2 Examples of vignettes

Standard case

A 54-year-old woman has suffered from breast cancer for 5 years. One year ago metastases were discovered in her bones and half a year later these had spread to her liver and to the base of her skull. She has undergone surgery and has been treated with hormone therapy, radiotherapy and chemotherapy. Her disease is incurable. The woman has a variety of symptoms. She is extremely fatigued, weak and has remittent nausea. She is permanently bedridden. For a couple of weeks she has been bothered by serious pain caused by spontaneous fractures caused by the bone metastases. Pain relief by means of a subcutaneous morphine pump is barely effective. The patient has always been a lively woman and until recently she has accepted every form of therapy. For a couple of days, however, she has been indicating that she is at the end of her tether. She does not want to postpone her death any longer and repeatedly asks her doctor for euthanasia.

Fear of future decay

A 62-year-old widower was diagnosed one and a half month ago with a malignant, fast growing brain tumour. Considering the location and form of the tumour there is no treatment possible. Cure is impossible. At the moment he is in reasonable condition. His fine locomotory system is affected, although he can still walk by himself. He does not have pain, yet he is sometimes bothered by double vision and he has initial problems finding words. The patient had been informed extensively about his condition, prognosis and possible palliative treatments. As a director of a large trading company this man had always been in charge of affairs. He cannot bear the fear of losing grip on his life and ending up in a situation in which he may no longer be able to express himself. Given the fact that no curative treatment is at hand, this fear is considered highly valid. Loss of speech capacities and (partial or complete) paralysis are to be expected at short notice. Increased pressure on the brain may lead to impingement of brain functions, resulting in a coma. The man does not want to await further decay. He says he does not want to experience the deathbed like that he witnessed with his wife. She died of breast cancer, which metastasised to the brain. He asks his doctor to end his life.

Analyses

Descriptive statistics were used for personal characteristics of the respondents, the recognisability of the cases and judgement of suffering. For analysing the determinants of the judgement of suffering, judgement of suffering was dichotomised into two categories: yes (yes) and no (maybe for the patient but not in my opinion and no). Chi-square tests were applied to assess whether the three groups differed in their judgement of the patients’ suffering. For the three groups, univariate odd ratios with 95% CI were calculated to assess univariate associations between judgement of suffering with age, sex and work experience. Subsequently, multivariate logistic regression analyses were conducted for every case for the three groups. For GPs and consultants, we also performed multivariate regression analyses to assess associations between judgement of suffering and group, age, sex, work experience, experience with euthanasia (yes vs no) and training in palliative care (yes vs no). p Values of less than 0.05 were considered to indicate statistical significance. Percentages were corrected for missing values when these comprised less than 5% of all cases. Statistical analyses were performed using the statistical package for social sciences version 15.0.

RESULTS

The overall questionnaire response rate was 38% among GPs, 65% among consultants and 63% among review committee members.

The mean age of the GPs was 49.6 years; 35% were women (see table 1). Almost half of the GPs (49%) had more than 20 years work experience. Furthermore, 55% had received training in palliative care. Seventy per cent indicated that they had performed euthanasia in the past 5 years. The consultants were on average somewhat older (55.4 years) and were more often men (25%) than the GPs. On average they had 4.5 years of work experience as a consultant. Most of them had received training in palliative care (74%) and 59% indicated that they had performed euthanasia in the past 5 years. The members of the review committees were on average older than the GPs and the consultants (59 years) and they were more often women (47%). On average they had somewhat more than 5 years experience as a committee member. Most of the responding committee members were legal experts.

Table 1 Background characteristics of the respondents

Table 2 shows that in most of the cases physicians could imagine that such a case would actually occur in his or her own clinical practice.

Table 2 Recognisability of the cases

Table 3 shows the judgements of the respondents regarding the unbearability of the patient’s suffering. Nearly all respondents were personally convinced that the patient’s suffering in the standard case was unbearable. For all the other vignettes, GPs were less often convinced that the suffering of the patient was unbearable compared with consultants and review committee members. These differences reached statistical significance for the vignettes addressing fear of future decay, extreme dependency, being a burden to others, early dementia and loss of dignity. Across all respondents, the suffering in the case of early dementia and being tired of living was least often considered unbearable, with all percentages within the groups being lower than 35%. Furthermore, GPs more often than consultants and review committee members chose the “in between” category, that is, that the suffering may be unbearable from the perspective of the patient, but that they themselves did not consider it to be unbearable.

Table 3 Judgement of unbearable suffering

Table 4 shows univariate and multivariate associations between the personal characteristics of the respondents and their response to the vignette about extreme dependency. The same analyses were done for the other vignettes but because a similar pattern of associations was found, only the results for this vignette are shown. In both the univariate and multivariate analyses, no significant associations were found between age, sex and work experience and the judgement of suffering. Except for the standard vignette and the vignette about being tired of living, group membership showed significant associations, which remained when controlled for age, sex and work experience for the vignette about extreme dependency (p = 0.01) and early dementia (p = 0.00), and were somewhat lower for the vignette about burden to others (p = 0.07) and loss of dignity (p = 0.06).

Table 4 Determinants of judgement of unbearable suffering (case 2)

For the GPs and consultants, we also performed multivariate regression analyses for each vignette to assess associations between judgement of suffering and group, age, sex, work experience, experience with euthanasia and training in palliative care. Similar significant results for group were found (in which the consultants were more likely to consider the suffering unbearable than the GPs), whereas training in palliative care did not show significant associations. Furthermore, physicians who had performed euthanasia significantly more often judged that the patient suffered unbearably in the vignette about fear of future decay (p = 0.02) and the vignette about early dementia (p = 0.03) but not in the other vignettes.

DISCUSSION

This study explored whether there are any differences between physicians, consultants and members of the review committees in their judgements of patients’ suffering with the use of hypothetical vignettes. It was found that for a patient whose suffering was mainly rooted in physical symptoms and who had a limited life expectancy, nearly all respondents were convinced that the patient suffered unbearably. For the other described cases, in which physical suffering was less and psychosocial and existential aspects were more central, there were more differences between and within the groups. In general, GPs less often thought the suffering was unbearable compared with consultants and members of the euthanasia review committees.

The large differences between the three groups are surprising. Why would GPs less often than consultants and review committee members consider the suffering in the described cases to be unbearable? The differences cannot be explained by general personal characteristics of the respondents such as age, gender, work experience or training in palliative care. There could be several other potential explanations for this divergence.

A first explanation for the differences between the groups could be their experience with judging euthanasia and the phase of the patient’s request. GPs receive a limited number of euthanasia requests, which are not always very explicit and may still be in the process of becoming stronger. Consultants are far more often involved in the evaluation of euthanasia cases and patients’ requests are usually more explicit and serious because they have already passed the judgement of the GP. Review committee members are even more often involved in the evaluation of euthanasia cases, and patients’ requests have already been carried out. Furthermore, GPs usually receive no formal training in how they should deal with euthanasia requests, whereas consultants receive a 3-day training in which they are taught to describe the patient’s suffering in the context of the patient’s personality and life course and the patient’s personal environment. It could be because consultants and review committee members have more extensive experience with judging about patients’ suffering that they have come to set broader boundaries as to when suffering becomes unbearable. These may also more often include psychosocial and existential aspects, whereas GPs may feel it is not within their expertise to judge such aspects.

GPs’ reluctance could also be explained by the fact that they are the first in a “chain” who judge the suffering of the patient. Consultants could be more willing to judge the suffering of the patient as unbearable when they know that the GP, who knows the patient best, is convinced that the patient suffers unbearably. The same “case law effect” could be even stronger among review committee members: cases that reach the committee are usually positively judged by the consultants as well.

Second, we have asked the respondents to evaluate the suffering of the patient from a hypothetical patient description on paper. Whereas for all respondents the information provided was far more limited than one may have available in reality, this may have hindered the GPs most because their judgement is usually based on frequent personal contact with the patient. This may also explain why GPs often chose the in-between category, in which the patient might consider the suffering unbearable but they themselves did not. For epistemological as well as psychological reasons, they may need the personal relationship with the patient to assess the suffering in its context.

Third, the differences between the groups could be explained by differences in attitudes. It could be that the engagement and interest of some consultants and review committee members in their function is rooted in a positive attitude concerning the permissibility of euthanasia. Consultants and review committee members might therefore adopt “broader” boundaries for the concept of suffering in the context of a euthanasia request than GPs. However, we did not measure such attitudes in our study.

Finally, the role of the respondent in the process of euthanasia may influence his or her judgements. GPs may receive requests for euthanasia from their patients and, if a request is granted, actually perform euthanasia. It is known that this is often a very difficult and emotional situation for physicians,10 11 and that some consider this to be a very demanding experience that they generally would like to avoid.12 In contrast with GPs, consultants and review committee members do not carry out euthanasia, they only critically evaluate the situation of the patient. It could be that the potential burden of performing euthanasia makes physicians inclined to judge the suffering in the patient descriptions as not entailing unbearable suffering. Our findings are in line with a Dutch study comparing attitudes of the general public and physicians concerning the acceptability of euthanasia in several situations (including dementia and tired of living).13 That study found that physicians less often than the general public considered euthanasia acceptable for such boundary cases.

What are the implications of these findings?

Differences among physicians’ judgements of suffering could be interpreted as being problematical. Apparently, from the perspective of a patient, it is partly a matter of chance whether a request for euthanasia ultimately results in the performance of euthanasia, because the physician (and later in the process also the consultant) has to be convinced that the suffering is unbearable. This could be seen as an unacceptable inequality, even a form of injustice. It seems that in like cases, patients are not treated alike. It should be noted that this appears to be a problem mainly in boundary cases, which are a minority of the euthanasia cases in The Netherlands. However, it is important to put this apparent “injustice” into perspective. Performing euthanasia is not part of normal medical practice and a physician is not obliged to perform euthanasia when a patient requests this, meaning that the variation in opinions we found is only logical and coherent with the legal system of euthanasia in The Netherlands. Euthanasia is not a “medically indicated treatment” that the physician should perform once the criteria are satisfied. Even if “unbearable suffering” exists and all other criteria are satisfied, the physician is not obliged to perform euthanasia, eg, in the case of conscientious objection (although in such circumstances the physician should refer the patient to another physician). The criteria make the act legally allowed, not compulsory.

The findings could also be considered problematical because in our hypothetical cases suffering is most often considered to be unbearable when it is related to physical symptoms (especially by GPs), and less often when it is related to psychosocial or existential symptoms. If this also holds for real cases, proponents of euthanasia could conclude that the reach of the Dutch euthanasia law might not be fully used. On the other hand, the Dutch system of regulating euthanasia is sometimes criticised for being subject to abuse.14 15 The physician bears the full responsibility for a carefully performed euthanasia, whereas legal authorities, that is, the review committees, only judge cases afterwards. Some argue that it is very hard for a party who was not involved to gain clear insight into the medical situation of the patient, the decision-making process and the performance of euthanasia, and that the whole system is based upon trust of the physicians’ ability and willingness to be transparent about his acts. Our data show, however, that fears of slippery slope practice due to this system seem to be unfounded, because GPs are not inclined to judge patients’ suffering that is outside the reach of the law to be unbearable. As such, GPs can be considered the “gatekeepers” of the legal system.

This study has several limitations that should be recognised. The response rate among GPs was not very high, although the main characteristics of the responders (age, gender, type of practice) were comparable with characteristics of all GPs in The Netherlands.16 The conclusions drawn may be somewhat limited due to this fact. Another limitation to a quantitative survey is that the questions, in order to be standardised, are inevitably simplifying a complex situation, stripping it of its emotional and personal context, and thus perhaps creating artificial environments for answers.

We conclude that when non-physical aspects of suffering are central in a euthanasia request, there is variance between and within GPs, consultants and members of the euthanasia committees in their judgement of the patient’s suffering. Possible explanations could be their different roles in the process, differences in experience with evaluating euthanasia cases, or differences in their views regarding the permissibility of euthanasia. GPs can be considered the “gatekeepers” of the legal system concerning euthanasia.

REFERENCES

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Footnotes

  • Funding: This paper was funded by a grant from The Netherlands Organisation for Scientific Research (NWO).

  • Competing interests: None.

  • Provenance and peer review: Not commissioned; externally peer reviewed.

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