Article Text
Abstract
Introduction: The Dutch Euthanasia Act (2002) states that euthanasia is not punishable if the attending physician acts in accordance with the statutory due care criteria. These criteria hold that: there should be a voluntary and well-considered request, the patient’s suffering should be unbearable and hopeless, the patient should be informed about their situation, there are no reasonable alternatives, an independent physician should be consulted, and the method should be medically and technically appropriate. This study investigates whether physicians experience problems with these criteria in medical practice.
Methods: In 2006, questionnaires were sent to a random, stratified sample of 2100 Dutch physicians (response rate: 56%). Physicians were asked about problems in their decision-making related to requests for euthanasia or assisted suicide after enforcement of the 2002 Euthanasia Act.
Results: Of all physicians who had received a request for euthanasia or assisted suicide (75%), 25% had experienced problems in the decision-making with regard to at least one of the criteria of due care. Physicians who had experienced problems mostly indicated to have had problems related to evaluating whether or not the patient’s suffering was unbearable and hopeless (79%) and whether or not the patient’s request was voluntary or well considered (58%).
Discussion: Physicians in The Netherlands most frequently reported problems related to aspects in which they have to evaluate the patient’s subjective perspective(s). However, it can be questioned whether placing emphasis on these subjective aspects is an adequate fulfilment of the duties imposed on physicians, as laid down in the Dutch Euthanasia Act.
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The Dutch Euthanasia Act—the Termination of Life on Request and Assisted Suicide (Review Procedures) Act—came into force in 2002.1 As the title suggests, it provided a legal basis for the review system that already existed. However, in doing so, it also changed the Criminal Code by granting immunity to a physician who acts in accordance with the statutory due care criteria (see Box). These criteria (laid down in Article 2 of the Act) reflect the criteria developed by the courts during the preceding decades and are generally considered to be a summary of case law concerning euthanasia or assisted suicide.2
Box 1 Dutch criteria of due care for euthanasia and physician-assisted suicide as laid down in the Act
The patient’s request should be voluntary and well considered.
The patient’s suffering should be unbearable and without prospect of improvement.
The patient should be informed about their situation and prospects.
There are no reasonable alternatives.
Another, independent physician should be consulted.
The termination of life should be performed with due medical care and attention.
The “voluntary” nature of the request presupposes that there has been no pressure from others and that the mental state of the patient (ie, competent) allows them to determine what they want; “well considered” means—according to the proceedings of parliament when the Act was discussed—that the request is enduring and that the patient made it on the basis of full information and understanding about their medical situation.
The suffering of a patient may have different causes, such as pain, increasing dependency and anxiety. However, according to a decision of the Supreme Court in 2002, the suffering should predominantly result from a medically classifiable disease or disorder: other forms of suffering do not justify euthanasia or assisted suicide.3 The “unbearability” of the suffering is assessed from the patient’s perspective and the patient’s ability to cope with the situation. The patient themself should consider their suffering as unbearable. The physician only needs to be convinced that the patient is experiencing unbearable suffering. “Without prospect of improvement” means that an improvement of the medical situation of the patient in the foreseeable future cannot be expected.
Informing the patient is the physician’s responsibility and is part of the professional medical standard. For patients to make a “well-considered” request, they need to have a full understanding of their illness, the diagnosis, prognosis and possible treatment.
The requirement that euthanasia or assisted suicide is only allowed when there are no reasonable alternatives to alleviate the patient’s suffering has been amply discussed in parliament, in particular the question to what extent a patient may refuse care without consequences for their request. According to the parliamentary proceedings, the physician should discuss all the available palliative options with the patient before deciding about euthanasia or assisted suicide. Basically, a patient may refuse treatment or palliative care; however, if the intervention in question is not very invasive, the physician may conclude that there is a reasonable alternative and that euthanasia or assistance in suicide is therefore not justified.
The consultation requirement serves to guarantee careful decision-making. The consultant should be an independent physician, who has to give a written opinion on whether the criteria of due care (as mentioned above) have been met. The consultant should also describe their relationship with the attending physician and patient.
The requirement that euthanasia should be performed with due medical care primarily concerns the appropriate administration of the medication as recommended by the Royal Dutch Society for the Advancement of Pharmacy (KNMP). Additionally, the medication should be administered by the attending physician and not by nursing staff.
It is the task of the five multidisciplinary review committees to assess whether a physician did proceed in accordance with the Act. This is done on the basis of the physician’s report; however, the review committee may request the physician to supplement this report either orally or in writing, or may obtain information from other persons involved, if this is necessary for a proper assessment. The public prosecution is only informed when a review committee thinks that the physician, in performing euthanasia or physician-assisted suicide, did not comply with one of the criteria. The physician has a central position in the Act. Although self-determination of the patient is a necessary condition to justify the termination of their life, in the final analysis the physician’s responsibility to alleviate the patient’s suffering is the most important principle underlying the Act. The fact that the Dutch model is basically medically oriented, explains to a large extent the support it has always received from the Royal Dutch Medical Association, as well as its wide acceptance in the social and political arena.
In applying the criteria, the physician may find some support in the literature or in court decisions and cases decided by the review committees. Nevertheless, judging whether the criteria for due care are met may be difficult in clinical practice. The present study investigated to what extent physicians from different specialties experience problems with the criteria of due care in clinical practice.
METHODS
Study design and respondents
This study involved a national questionnaire survey among 2100 Dutch physicians; 1300 clinical specialists, 500 general practitioners and 300 nursing-home physicians. The sample sizes were based on the frequency with which physicians care for terminally ill patients, and on the total number of physicians working in a specific discipline. Respondents were selected according to the following criteria: (1) they were clinically active at the time they filled out the questionnaire, (2) they had actively practised medicine within the registered specialty for at least 1 year, and (3) they had to be living in The Netherlands. All addresses were taken from the professional registries of the relevant specialties. Over a 10-month period (February 2006 through November 2006) questionnaires were sent out and returned. Strict rules were applied to ensure the anonymity of all physicians. The overall questionnaire response rate, adjusted for physicians who were untraceable (n = 215), was 56% (n = 1032). Non-responders did not differ from responders in age, sex or place of residence.
Questionnaire
Physicians received a written questionnaire about their experiences with, and attitudes towards, the Dutch Euthanasia Act (2002). This questionnaire was previously tested among 16 respondents; they had few or no problems with regard to the interpretation of the questions. Physicians were first asked whether they thought they had been sufficiently informed about the Dutch Euthanasia Act. Subsequently, they were asked whether they had experienced problems in the decision-making about requests for euthanasia or assisted suicide in the context of the criteria of due care (see box 1) after the enforcement of the Euthanasia Act. For each criterion, physicians could indicate what specific aspects had caused their problems. We used prestructured answer categories that were based on earlier studies investigating end-of-life decision-making4 5 and the parliamentary proceedings on the Euthanasia Act. If these answer categories did not cover the problems experienced, physicians could elaborate on these in an open answer category.
Analyses
The results were made representative for all physicians in the relevant disciplines by weighting the data for different sampling fractions and response rates. We report absolute frequencies and weighted percentages. The 95% confidence intervals (CI) were calculated for the estimates of the number of physicians who indicated to be sufficiently informed about the Act, who had received a request for euthanasia or assisted suicide after the enforcement of the Euthanasia Act, and who had experienced problems related to the criteria of due care. Statistical analyses were performed using the Statistical Package for Social Sciences 11.0 (SPSS, Chicago).
RESULTS
More than 90% of all respondents reported to be sufficiently informed about the Dutch Euthanasia Act; nursing-home physicians (97%) more often reported to be sufficiently informed than general practitioners (93%) or medical specialists (87%) (table 1).
Of all respondents who had received a request for euthanasia or assisted suicide after the enforcement of the Act (75%), 25% had had problems in the decision-making with regard to at least one of the criteria of due care. General practitioners had experienced problems in decision-making in 28% of the cases; for medical specialists this percentage was 14%, and for nursing-home physicians this percentage was 35%. Having had problems in decision-making was not related to physicians’ age, sex or palliative care education. However, respondents who had performed euthanasia after the enforcement of the Act more often experienced problems in the decision-making (33%) than physicians who had not performed euthanasia (16%) (data not shown). In both subgroups, medical specialists least often experienced problems. For all respondents who had experienced problems regarding the criteria of due care, the problems were mostly related to the requirement that they should assess whether the patient’s suffering was unbearable and hopeless (79%), whether the patient’s request was voluntary and well considered (58%) and whether reasonable alternatives were available (33%) (table 2). For physicians who had performed euthanasia, these percentages were comparable (data not shown).
With regard to the requirement that the physician should be convinced that the patient’s request was voluntary and well considered, respondents indicated to have experienced difficulty in assessing whether the patient’s request was well considered in 23% and voluntary in 18% of the cases; 18% indicated to have experienced problems in judging whether the patient’s view of the severity of the disease was appropriate (table 3).
With regard to the requirement that the physician should be convinced that the patient’s suffering was unbearable and hopeless, physicians more often indicated to have experienced problems in assessing whether they themselves were convinced of the patient’s unbearable suffering (53%) than in assessing whether the patients themselves experienced their suffering as unbearable (28%). Medical specialists less often indicated to have had difficulty in assessing the unbearability of the patients themselves (27%) than general practitioners (57%) or nursing-home physicians (63%). Further, 18% reported to have experienced problems in assessing whether the suffering was hopeless, and 15% in assessing whether it would be unbearable and hopeless within a very short time.
For the requirement that euthanasia or assisted suicide is only allowed when there are no reasonable alternatives to alleviate the patient’s suffering, physicians most frequently indicated to have experienced problems with assessing whether there were reasonable alternatives for the signs and symptoms of the patient (15%).
Respondents less frequently indicated to have experienced problems with the “other” requirements. In total, 15% of the respondents experienced problems concerning the information that should be given to the patient: respondents reported to have experienced problems with informing the patient about their situation and prospects in 6% of the cases, and with assessing whether the patient understood the information in 4% of the cases (data not shown). The 15% of respondents who experienced problems with the consultation found it particularly difficult to find an independent physician (4%). Problems concerning how to perform euthanasia (12%) were mostly related to how to deal with unexpected events (7%).
DISCUSSION
In the present study, one out of four physicians who had received a request for euthanasia or assisted suicide after the enforcement of the 2002 Dutch Euthanasia Act experienced problems in decision-making related to at least one of the criteria of due care. However, having experienced problems should not necessarily be interpreted as a negative finding since (by their nature) decisions related to euthanasia may be very difficult. Requests for euthanasia and assisted suicide typically result in several discussions with patient, family and other care givers about the criteria of due care. The fact that some criteria are more difficult to assess than others suggests that they are taken seriously in the decision-making and will probably receive relatively considerable attention.
The proportion of respondents who had received a request for euthanasia or assisted suicide and had experienced problems in the decision-making was highest among nursing-home physicians, followed by general practitioners, and lowest among medical specialists. Apparently, each specialty handles the criteria in a different way. Medical specialists more often than other physicians reported to be less well informed about the content of the Act, which might result in less in-depth or comprehensive decision-making. Further, in hospitals a different “care culture” may be expected in the sense that medical specialists generally have to decide and act more quickly. Additionally, they often have their first encounter with patients relatively late in the course of illness and thus have less opportunity to discuss issues concerning end-of-life decision-making.6 A smaller proportion of problems in the decision-making about requests for euthanasia or assisted suicide does not imply that the criteria are more easily met when euthanasia is performed in the hospital; it is reported that medical specialists are more frequently requested to supply additional information to review committees.7 The higher percentage of nursing-home physicians that reported to have experienced problems is probably related to the fact that most patients living in a nursing home suffer from a fatal, degenerating disease. Accordingly, nursing-home physicians may have a different level of “acceptance” towards the patient’s suffering; as a result, weighing whether requests for euthanasia should be granted for these patients may be relatively difficult. Moreover, decisions concerning euthanasia might be particularly difficult because a large proportion of nursing-home patients are incompetent before their death.8 The Act stipulates that a physician may act according to a written request of the once competent but now incompetent patient, provided that the other criteria are met. However, to determine whether the criteria are met in such patients is extremely difficult in actual practice9 10 and euthanasia is almost never performed on the basis of a written request of an incompetent patient.
Apart from the physician’s specialty, having performed euthanasia also appeared to be an important factor in how to deal with the criteria. The higher proportion of problems in the decision-making among respondents who had previously performed euthanasia suggests that physicians who were more intensively involved in the decision-making may have addressed the criteria more exhaustively or more comprehensively.
If respondents had experienced problems regarding the criteria of due care, they rarely reported other problems related to evaluating whether the patient was well informed about their medical situation, consulting another independent physician and/or performing euthanasia with due medical care. These latter criteria are probably more easily applied, that is they focus more on the appropriateness of the method than on the decision to hasten the death of the patient, are more procedural in nature (consultation of another physician) or are already included in the substantive requirements (ie, an insufficiently informed patient cannot make a well-considered decision). However, although physicians seldom mentioned problems related to informing the patient, it is reported that physicians sometimes fail to recognise the patient’s misconceptions regarding their prognosis.11
Respondents who had experienced problems regarding the criteria of due care reported problems far more often with the other criteria: that is more than half of the respondents reported problems related to evaluating the patient’s request, or judging the unbearability or hopelessness of the patient’s suffering. Furthermore, about one-third reported to have experienced problems related to evaluating whether there were any reasonable alternatives for the patient. In the Euthanasia Act, these three criteria (judging the patient’s request, the patient’s suffering, and reasonable alternatives) are purposefully framed in open global terms. This means that in every new case, the criteria have to be interpreted taking into account the specific circumstances of that case. Although these criteria are meant to be independent, and are presented as such in the Act, they do overlap to some extent. The unbearableness and hopelessness of the patient’s suffering, for example, are closely related to the absence of reasonable alternatives. In general, the possibility of improvement and the availability of other solutions to alleviate suffering are more objective requirements, although the assessment as to whether palliative care is a “reasonable” alternative can be difficult. However, whether the request is voluntary or well considered, or whether the suffering is unbearable, is to a large extent a matter of the patient’s subjective experience and personal perspective. To a certain extent, a personal commitment of the physician is needed to perform euthanasia, which is a non-medical act in itself. However, our results indicate that physicians predominantly experience problems with such subjective aspects. From a physician’s perspective, this is understandable because it is more difficult to rely on a patient’s experience and ideas than on one’s own medical-professional judgement. The fact that unbearable suffering can comprise more than physical symptoms alone12 probably makes the interpretation for physicians even more difficult.
It seems that physicians are given two different roles in the Act. First, an empathising role, in which physicians have to evaluate whether the patient’s suffering and request are understandable. Second, a medical-professional role, in which the physician’s professional judgement is required, to assess whether there is a reasonable alternative to euthanasia or assisted suicide. However, fulfilling two different roles at the same time is difficult and the physician’s contribution may be more significant when more weight is put on their medical-professional role. In the current situation, the physician’s struggles with the subjective requirements could hamper an adequate assessment of aspects that are more related to professional judgement. To attain the most appropriate role for physicians in cases of euthanasia or assisted suicide, the Dutch government could be more explicit in its expectations towards physicians who intend to perform euthanasia or assisted suicide. It should be clearly communicated that the patient’s suffering and request (apart from judging the patient’s competency) can be assessed objectively only to a very limited extent and that, accordingly, these aspects need to be left to the patient to a great extent. In contrast, the evaluation of whether or not reasonable alternatives to alleviate the patient’s suffering are available can and should be assessed by the attending physician through a profound medical-professional evaluation. Such a clarification would fit into the Dutch euthanasia policy that is based on the principle that assisting in euthanasia or assisted suicide is only acceptable when the patient’s suffering cannot otherwise be relieved. Moreover, this would put the physician in a clearer position in relation to the patient and their family.
In conclusion, applying the criteria of due care means that physicians have to make difficult decisions. In such situations it should be clear what the physician’s roles and responsibilities are. The present study shows that physicians in The Netherlands primarily report problems with the criteria that are related to the patient’s subjective perspectives; however, the question remains whether physicians can play a major role with regard to these subjective aspects. It is argued that they should focus more on the requirement for the absence of reasonable alternatives.
Acknowledgments
The authors thank the thousands of physicians who provided the study data, the members of the Steering Committee, the Royal Dutch Medical Association and the Chief Inspector for Health Care for their support of the present study.
Footnotes
Competing interests: None.
Funding: This study was supported by a grant from ZonMW, The Netherlands Organization for Health Research and Development.