Loes Pijnenborg

Euthanasia and other medical decisions concerning the end of life

This article presents the first results of the Dutch nationwide study on euthanasia and other medical decisions concerning the end of life (MDEL). The study was done at the request of the Dutch government in preparation for a discussion about legislation on euthanasia. Three studies were undertaken: detailed interviews with 405 physicians, the mailing of questionnaires to the physicians of a sample of 7000 deceased persons, and the collecting of information about 2250 deaths by a prospective survey among the respondents to the interviews. The alleviation of pain and symptoms with such high dosages of opioids that the patients life might be shortened was the most important MDEL in 17.5% of all deaths. In another 17.5% a non-treatment decision was the most important MDEL. Euthanasia by administering lethal drugs at the patients request seems to have been done in 1.8% of all deaths. Since MDEL were taken in 38% of all deaths (and in 54% of all non-acute deaths) we conclude that these decisions are common medical practice and should get more attention in research, teaching, and public debate.

Deciding not to resuscitate in Dutch hospitals.

The use of do not resuscitate (DNR) orders in Dutch hospitals was studied as part of a nationwide study on medical decisions concerning the end of life. DNR decisions are made in 6 per cent of all admissions, and 61 per cent of all in-hospital deaths were preceded by a DNR decision. We found that in only 14 per cent of the cases had the patients been involved in the DNR decision (32 per cent of competent patients). The concept of futility is analysed as these findings are discussed. We conclude that determining the effectiveness of resuscitation is a medical judgement whereas determining the proportionality (burden/benefit ratio) of it requires a discussion between doctor and patient (or his or her surrogates). Since the respondents in the cases without patient involvement gave many reasons for their decision that went beyond determining effectiveness, we conclude that more patient involvement would have been desirable.

The Remmelink study. Two years later.

In 1990 the Dutch government appointed a committee to investigate medical decisions concerning the end of life. The committee was chaired by Professor J. Remmelink, who was at that time the attorney general of the Dutch Supreme Court. Although the immediate motivation for this investigation was the ongoing discussion in Parliament about legalizing euthanasia, the committee was explicitly asked to do more than explore the incidence of euthanasia. In fact, it was asked by the government to investigate all kinds of medical decisions concerning the end of life. Consequently, euthanasia-related decisions such as assisted suicide and life-terminating acts without the explicit request of the patient were also studied, as were decisions not to treat and decisions to alleviate pain and other symptoms with possibly life-shortening effect. The Remmelink Committee did not perform this investigation itself but instead asked the Department of Public Health of the Erasmus University to form a fully independent research group to do the actual work. We were members of this research group. In this article, after a short description of the main results, we will discuss the impact of our report to the Remmelink Committee on the Dutch debate about end-of-life legislation and some of the implications of the data. Results We have previously described details of the study design elsewhere.[1] For this article it suffices to state that there were three different substudies: interviews with physicians, questionnaires mailed to the attending physicians of deceased persons, and a prospective survey. The response rates of the substudies were 91 percent, 76 percent, and 80 percent respectively. In total we obtained information about approximately 10,000 deaths. The total number of deaths in the Netherlands is 129,000 per year. Most of the doctors we interviewed found voluntary euthanasia or assisted suicide acceptable under special circumstances. Fifty-four percent of them had performed euthanasia or assisted suicide at some time or other, and a further 34 percent considered it conceivable that they would do so, although some of them could conceive of this only under extreme conditions. Although 12 percent of the physicians indicated that they would never perform euthanasia or assist in suicide, two-thirds of these (8 percent of the total) would refer patients requesting such help to a colleague. A final 4 percent refused to have anything to do with such requests. We found that 2,300 cases of euthanasia (1.8% of all annual deaths) and 400 cases of assisted suicide (0.3% of all deaths) occurred in 1990. Nineteen hundred of these 2,700 cases were performed by general practitioners at home, 750 by specialists in hospitals, and approximately 20 by nursing home physicians. In 22,500 cases (17.5%) a decision had been taken not to treat; the same number of decisions were made to alleviate pain and other symptoms even if doing so hastened the patients death. Life-terminating acts undertaken without the patients explicit request appeared to occur 1000 times (0.8%). As we return to it below, we will expand the description of the results for this type of act. First, however, we must explain the study design somewhat. As is commonly known, in the Netherlands euthanasia is defined as ending a patients life at the patients explicit request. Our category of life-terminating acts without explicit request, then, was derived by excluding euthanasia. The category included all those cases in which there was patient involvement but in which this had not reached the stage of an explicit request. In 59 percent (600) of cases in this category there was some such patient involvement. The whole category involving no explicit request can best be characterized as concerning patients who were near death and clearly suffering grievously. The decision to end their lives was most often made within hospitals (710 times yearly), less often in general practice (270) and nursing homes (50). …

Nationwide study of decisions concerning the end of life in general practice in the Netherlands

Abstract Objective: To gain insight into decisions made in general practice about the end of life. Design: Study I: interviews with 405 physicians. Study II: analysis of death certificates with data obtained on 5197 cases in which decisions about the end of life may have been made. Study III: prospective study with doctors from study I: questionnaires used to collect information about 2257 deaths. The information was representative for all deaths in the Netherlands. Results: Over two fifths of all patients in the Netherlands die at home. General practitioners took fewer decisions about the end of life than hospital doctors and doctors in nursing homes (34%, 40%, and 56% of all dying patients, respectively). Specifically, decisions to withhold or withdraw treatment to prolong life were taken less often. Euthanasia or assisted suicide, however, was performed in 3.2% of all deaths in general practice compared with 1.4% in hospital practice. In over half of the cases concerning pain relief or non-treatment general practitioners did not discuss the decision with the patient, mostly because of incapacity of the patient, but in 20% of cases for “paternalistic” reasons. Older general practitioners discussed such decisions less often with their patients. Colleagues were consulted more often if the general practitioner worked in group practice. Conclusion: Differences in work situation between general practitioners and hospital doctors and differences between the group of general practitioners contribute to differences in the number and type of decisions about the end of life as well as in the decision making process.

Letters to the EditorLife-terminating acts without explicit request of patient

In the Dutch nationwide study on medical decisions concerning the end of life (MDEL) life-terminating acts without the explicit request of the patient (LAWER) were noted in 0.8% of all deaths. We present here quantitative information and a discussion of the main issues raised by LAWER. In 59% of LAWER the physician had some information about the patients wish; in 41% discussion on the decision would no longer have been possible. In LAWER patients tend to be younger and more likely to be male and to have cancer than in non-acute deaths generally. The physician (specialist or general practitioner) knew the patient on average 2.4 years and 7.2 years, respectively. Life was shortened by between some hours and a week at most in 86%. In 83% the decision has been discussed with relatives and in 70% with a colleague. In nearly all cases, according to the physician, the patient was suffering unbearably, there was no chance of improvement, and palliative possibilities were exhausted. MDEL probably will increase in number in future but interviews with Dutch physicians suggest a possible fall in LAWER, even though there will always be some situations in which a well-considered LAWER decision may have to be made.