Retrospective study of doctors' “end of life decisions” in caring for mentally handicapped people in institutions in the NetherlandsBMJ 1997; 315 doi: https://doi.org/10.1136/bmj.315.7100.88 (Published 12 July 1997) Cite this as: BMJ 1997;315:88
- G J M W van Thiel, bioethics researchera,
- J J M van Delden, nursing home physiciana,
- K de Haan, physician in the care of mentally handicappedb,
- A K Huibers, bioethics researchera
- a Centre for Bioethics and Health Law, Utrecht University, PO Box 80105, 3508 TC Utrecht, Netherlands
- b 's Heeren Loo-Lozenoord, Ermelo, Netherlands
- Correspondence to: Ms van Thiel
- Accepted 19 May 1997
Objectives: To gain insight into the reasons behind and the prevalence of doctors' decisions at the end of life that might hasten a patient's death (“end of life decisions”) in institutions caring for mentally handicapped people in the Netherlands, and to describe important aspects of the decisions making process.
Design: Survey of random sample of doctors caring for mentally handicapped people by means of self completed questionnaires and structured interviews.
Subjects: 89 of the 101 selected doctors completed the questionnaire. 67 doctors had taken an end of life decision and were interviewed about their most recent case.
Main outcome measures: Prevalence of end of life decisions; types of decisions; characteristics of patients; reasons why the decision was taken; and the decision making process.
Results: The 89 doctors reported 222 deaths for 1995. An end of life decision was taken in 97 cases (44%); in 75 the decision was to withdraw or withhold treatment, and in 22 it was to relieve pain or symptoms with opiates in dosages that may have shortened life. In the 67 most recent cases with an end of life decision the patients were mostly incompetent (63) and under 65 years old (51). Only two patients explicitly asked to die, but in 23 cases there had been some communication with the patient. In 60 cases the doctors discussed the decision with nursing staff and in 46 with a colleague.
Conclusions: End of life decisions are an important aspect of the institutionalised care of mentally handicapped people. The proportion of such decisions in the total number of deaths is similar to that in other specialties. However, the discussion of such decisions is less open in the care of mental handicap than in other specialties. Because of distinctive features of care in this specialty an open debate about end of life decisions should not be postponed.
Little is known about doctors' decisions at the end of life that might hasten death in the care of mentally handicapped patients
This study shows that these end of life decisions are an important aspect of care of mentally handicapped people in institutions, occurring in around 40% of deaths
As is the case in other specialties, a public debate about such decisions could greatly contribute to the quality of care for mentally handicapped patients
The role of communication with patients should be reconsidered to draw attention to the expressions of incompetent patients
The life of mentally handicapped people is usually strongly influenced by the care of others because most of them are dependent on help with all types of activities. Also, many of the decisions of other people have repercussions on their way of living and dying, an important example being decisions at the end of life that might hasten death (“end of life decisions”). Six years ago data from the Netherlands (published in the so called Remmelink report) offered insight into the end of life decisions made by doctors in hospitals, family practice, and nursing homes but not by doctors caring for mentally handicapped people.1 2 Recently, the study was repeated,3 but, again, there were no specific data on mental handicap. How many people in the Netherlands are mentally handicapped is unknown,4 but about 31 000 people live in 136 institutions.5 Until recently, end of life decisions by doctors caring for mentally handicapped people have been discussed only among people directly concerned with a specific case. One of the reasons for the lack of public debate is that there is no insight into what is happening. We therefore performed a nationwide retrospective study of doctors' end of life decisions for mentally handicapped patients in institutionalised care, with the aim of discovering what type of decisions had been taken, the prevalence of such decisions, and the important aspects of the decision making process.
Subjects and methods
The study population consisted of doctors. Although nurses and the patients' representatives usually participate in decision making, the doctor has final responsibility for medical decisions. There is no official registry of doctors working in the care of mentally handicapped people but most are members of one association. This association gave us its membership list, which contained 224 names.
We drew a sample at random. To reach the number of interviews envisaged we had to draw 142 names. The people selected had to be currently working in the care of mentally handicapped people. Twenty six failed to satisfy this criterion; 15 others were untraceable or unable to participate because they had been ill for a long time. Twelve of the 101 people selected who satisfied the selection criterion and could be traced refused to participate. The 89 doctors reported all deaths of patients for whom they were the attending physician that occurred from 1 March 1991 to 1 March 1996. When less than five years were covered the doctor indicated the actual period. Deaths in hospital and deaths occurring while the respondent was working as a locum were excluded. Eighty nine doctors completed a questionnaire, which comprised six questions for each case, including whether an end of life decision had been taken. Doctors were recommended to use the patients' files while filling in the questionnaire. To estimate annual absolute numbers, we used a weight of 1.79 on the basis of the proportion of doctors represented in the sample.
Sixty eight doctors mentioned at least one case in which they had taken an end of life decision, and they were invited to be interviewed about the most recent such death. One refused. Finally, 67 interviews took place between March and June 1996. The interviews were conducted by eight trained interviewers. All of them had experience as a doctor in caring for mentally handicapped people. The interviews lasted between one hour and two and a half hours.
The decisions we studied were withholding and withdrawing life prolonging treatments (non-treatment decisions), relieving pain and symptoms with opiates in dosages that may have shortened life, and ending life by giving lethal drugs (euthanasia by lethal injection). The interview schedules contained many questions identical with those in the Remmelink questionnaire.1 2 Because most mentally handicapped patients are incompetent, a refinement was made about the patient's request. We asked in detail about patients' other actions such as non-autonomous requests or non-verbal communication. Examples of non-autonomous requests were patients saying that they wanted to go to heaven or that they wanted to be left alone. Non-verbal communication included actions of the patient that were interpreted by the doctor or others as a wish to die or stop treatment—for example, constantly removing a feeding tube or resisting all medical treatment.
Mental handicap and diseases were classed according to ICD-10 (international classification of diseases, 10th revision).
No patient had died in the previous five years for 10 of the 89 respondents, while the remaining 79 doctors reported 859 deaths in an average period of 4.7 years. Of these 79 doctors, 11 had not taken an end of life decision and 68 had taken such a decision in 350 out of 859 cases (41%); 254 were decisions to withhold or withdraw treatment, 92 were to relieve pain and symptoms with opiates, and four were to end life with a lethal drug (table 1).
The number of reported deaths differed considerably from year to year. However, the proportions of the various types of decisions were similar. We estimated absolute numbers for 1995 on the basis of 222 reported deaths and the distribution of decisions to end life for that year. This resulted in an estimated total of 397 deaths. For these deaths we estimated that there would be 135 decisions to withhold treatment, 40 decisions to relieve pain and symptoms with opiates, and 222 deaths with no end of life decision. Although we found no decisions to end a patient's life with a lethal injection in 1995, we assumed that one or two of these decisions would have occurred in that year on the basis of the four cases in the whole sample.
Sixty seven doctors described the most recent death in which they had taken an end of life decision (tables 2, 3 and 4). Most doctors were trained as general practitioners (49) and were experienced, having spent an average of 13 years working in this specialty. Thirty six doctors said that they considered themselves to be part of a religious community. Most of the people who had died were under 65 years old, and almost all were considered by the doctor to be incompetent (table 2). They lived in 51 institutions with an average number of 427 residents. Many had diseases of the nervous and digestive systems. Two patients explicitly asked to die. Twenty three doctors said that they had noticed non-autonomous requests and relevant non-verbal communication (table 3).
The most common reason for taking the decision was the pain or suffering of the patient (19 doctors; table 3). In 46 cases the doctor discussed the decision with a colleague. Nurses were almost always consulted (60). Relatives or representatives were less often brought in (50), and consultation with the patient was reported in two cases (table 4).
Three cases of euthanasia were reported. These are included in the third column of tables 2, 3 and 4. The patients in these cases had severe illnesses, including severe heart problems (two patients), tetraplegia, severe epilepsy, and recurrent pneumonia (two patients). In two cases the suffering of the patient had increased substantially before the decision was taken, and the doctors saw no more options to alleviate this suffering. In the other case the doctor mentioned that the terminal phase had started. The doctors estimated that the lives of the patients were shortened by one week at most in all cases. All of them were incompetent and did not express their wishes about the decision. One patient, however, had refused hospital care a year before the decision, when he could still communicate. The doctors consulted a colleague or the nursing staff, or both, in all cases, and two doctors discussed the decision with the patient's relative or representative. Deaths were reported as natural in all cases.
The study included more than half of all doctors caring for mentally handicapped people in institutions, and the number of refusals was low. The doctors were asked to report only the deaths of patients for whom they were the attending physician. We believe that the questions were answered reliably because most doctors had the case files with them at interview. The distribution of the types of end of life decisions overall and in 1995 is similar. Our estimated total number for 1995 is close to the 412 deaths reported by the Dutch association for care of the mentally handicapped for 1994 (which is currently the most recent number available).6 A limitation of our study is the focus on the last end of life decision. This ignores the fact that such decisions are the result of a process rather than instantaneous.
Our results show that end of life decisions are an important aspect of care for mentally handicapped people. We found no comparable studies in this specialty. A recent study on medical practices at the end of life found that an end of life decision had been taken in 43% of deaths,3 a proportion that is nearly identical with the 41% that we found overall. This similarity might suggest that the debate in the care of mentally handicapped people is similar to that in other specialties. However, distinctive features of this specialty make separate discussion necessary. Professionals caring for mentally handicapped people have long term relationships with patients. Nurses' observations of the communication and needs of patients are important in decision making. Not only nurses but also representatives of the patient should be included in decision making. Until now, only autonomous requests by competent patients were considered important in end of life decisions. This is probably because the idea of autonomy is paramount. Moreover, when a decision has far reaching consequences, as in end of life decisions, more stringent requirements for competency should be applied.7 8 We think that regardless of competency, all expressions that might indicate the patient's wishes are important. Relevant expressions that are non-autonomous in the strict sense were noticed in 34% of our cases. Therefore, the role of communication with incompetent patients should be reconsidered.
The amount of time that life was shortened because of non-treatment in our study seems to be lower than that found in nursing homes in 1991 (life was shortened by 1-6 months in 32% of cases1 v 14% (6/44) of cases in our study (table 3). This suggests that end of life decisions are taken later in the course of illness in mentally handicapped people. An explanation could be that patients who are mentally handicapped are cared for in institutions, and the handicaps are usually not progressive lethal diseases. Also, doctors could be more reserved in deciding to hasten death in such patients.
Because of the distinctive features of care for mentally handicapped patients we believe that the difference in openness of debate between this and other specialties should be removed. A public discussion that resonates more fully with the predicaments of caring for mentally handicapped people could greatly contribute to the quality of care at the end of life of these patients.
We thank all the doctors who participated for their willingness to provide data for the study; Dr Paul J van der Maas for his contribution to the manuscript; Dr Hans van den Bergh, Ms Dieta Brandsma, Dr Marja Janse, Ms René Matthijsse, Ms Mascha Mos, Ms Jonaske de Ruiter, Ms Astrid van Tubergen, and Ms Cassandra Zuketto for conducting the interviews; Dr Paul Vrijmoeth, Ms Raphaële Huntjens, Professor Peter van der Heijden, and the members of the supervising committee for their contributions to the study; and the Dutch association of physicians in the care of the mentally handicapped (NVAZ) for their support.
Funding: Steunfonds Vereniging 's Heeren Loo.
Conflict of interest: None.