The role of nurses in physician-assisted deaths in Belgium

Methods

Study design

In 2007, we performed a two-phase large-scale survey exploring the attitude of nurses toward end-of-life decisions with a possible or certain life-shortening effect, and their involvement in these types of decisions.

The first phase was conducted between August and November 2007. It involved 6000 nurses in Flanders, Belgium, who were identified from a federal government database and asked about their attitudes toward life-shortening end-of-life decisions. The response rate of this study was 63%. More information about the characteristics of the study population and its findings is reported elsewhere. 18^,19 In that survey, we assessed each nurse’s experience in the 12 months before the survey in caring for patients for whom life-shortening end-of-life decisions were made. We presented three types of decisions (Box 1).

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Box 1: Three end-of-life decisions with a possible or certain life-shortening effect

A total of 1678 nurses met the inclusion criterion for the second phase of the study (see Appendix 1, available at www.cmaj.ca/cgi/content/full/cmaj.091881/DC1). In the second phase, conducted between November 2007 and February 2008, we mailed a questionnaire to these 1678 nurses with a supporting letter from two major professional nursing organizations. If necessary, a reminder letter was sent, followed by a second mailing of the questionnaire, followed by a final reminder as needed. Confidentiality of data was ensured, and all data were processed anonymously. The Ethics Committee of the University Hospital of the Vrije Universiteit Brussel granted ethical approval of the study design.

Results

Ten of the 1678 questionnaires were returned as undeliverable. Of the remaining 1668 questionnaires, 1265 were returned completed, for a response rate of 76%. Overall, 128 nurses reported that the last patient in their care for whom a life-shortening end-of-life decision was made received euthanasia; 120 nurses reported that the last patient in their care for whom a life-shortening end-of-life decision was made received life-ending drugs without his or her explicit request (Appendix 1, available at www.cmaj.ca/cgi/content/full/cmaj.091881/DC1). The characteristics of these 248 nurses are presented in Table 1. Among the nurses working in home care settings, more were involved in cases of euthanasia (25%) than in cases of assisted death without the patient’s explicit request (10%). The opposite was observed among nurses working in care homes: 16% reported that their patient had received euthanasia and 27% that life-ending drugs had been used without the patient’s explicit request. Most of the patients who received euthanasia were less than 80 years old (84% [102/122]), had cancer (78% [99/127]) and died in hospital (53% [68/128]). Most of the patients who received life-ending drugs without their explicit request were over 80 years old (42% [50/118]), had cancer (43% [52/120]) or cardiovascular disease (23% [28/120]) and died in hospital (64% [76/119]).

Of the nurses whose patient received euthanasia, 69% (84/122) reported that the patient had expressed his or her wishes about euthanasia to them. Of the nurses whose patient received euthanasia, 64% (75/117) reported having been involved in the decision-making process, but with different experiences (Table 2). Of the nurses whose patient received life-ending drugs without his or her explicit request, 4% (5/119) reported that the patient had expressed his or her wishes about the decision to them. Involvement in the decision-making process was reported by 69% (81/118) of nurses (Table 2). In both groups, the physician and nurse deciding together occurred less often (24% in euthanasia group and 31% in group without explicit patient request) than did the exchanging information between physician and nurse about the patient’s or relatives’ wishes and the patient’s condition (45% in euthanasia group and 51% in group without explicit patient request).

In the cases of euthanasia, 40% of the nurses were involved in some way in the preparation of the life-ending drugs (Table 3). During the administration of the drugs, 34% of the nurses reported that they were present and 31% that they gave support to the patient, the relatives, the physician or colleague nurses. The drugs were administered by the nurse in 14 (12%) of the cases of euthanasia. The physician was not a co-administrator in 12 of the 14 cases, but the drug was always given on his or her orders. The nurse administered a neuromuscular relaxant in four cases, a barbiturate in one case and opioids in nine cases. In nine cases of euthanasia (64%), the physician was not present during the administration of the drugs.

In the cases involving the use of life-ending drugs without the patient’s explicit request, 48% of the nurses reported that they had some part in the preparation of the drugs (Table 3). During the administration of the drugs, 56% reported that they were present and 51% that they gave support to the patient, the relatives, the physician or colleague nurses. The drugs were administered by the nurse in 45 (45%) of the cases. The physician was not a co-administrator in 37 of these cases; however, the drug was given on his or her orders in almost all cases (42 of 43 in which this information was reported). The nurse administered a neuromuscular relaxant in 6 (13%) of the 45 cases, a barbiturate in 3 (7%) and opioids in 34 (76%). The physician was not present in 58% of the cases in which the nurse administered the life-ending drugs.

Compared with nurses in the euthanasia group, those involved in the cases without an explicit request from the patient more often were present during the administration of the life-ending drugs (p = 0.001), gave support (p = 0.002) and administered the life-ending drugs (p < 0.001) (Table 3).

In the multivariable logistic regression analysis, factors significantly associated with a decreased involvement in decision-making were the nurse working in a home care setting (odds ratio [OR] 0.30, 95% confidence interval [CI] 0.13–0.74) and older age of the nurse (OR 0.92, 95% CI 0.88–0.97) (Table 4). Factors significantly associated with the nurse administering the life-ending drugs were the absence of an explicit request from the patient (OR 4.52, 95% CI 1.75–11.65), the patient being more than 80 years old (OR 5.57, 95% CI 1.98–15.70) and the nurse having had a recent experience with life-shortening end-of-life decisions (OR 2.55, 95% CI 1.00–6.51). Other factors were the sex and principal workplace of the nurses: female nurses working in hospitals were nearly six times (OR 5.92, 95% CI 1.97–17.81) and male nurses working in hospitals were 40 times (OR 40.07, 95% CI 7.37–217.79) more likely than their male and female counterparts working in other settings to administer the life-ending drugs.

Interpretation

In our study, more than half of the nurses surveyed in Flanders, Belgium, reported that they were involved in the physician’s decision-making about the use of life-ending drugs. In most cases, the involvement was merely an exchange of information about the patient’s or relatives’ wishes and about the patient’s condition. The nurse administered the life-ending drugs at the physician’s request in many cases, most of which were cases without an explicit request from the patient.

The euthanasia law in Belgium states that the physician must discuss requests for euthanasia with the nurses involved. 16 From the completed questionnaires we received, this did not always occur. In a survey of physicians in Belgium, only half of those who had had cases of euthanasia reported that they had involved nurses in their decision-making. 9 In the study by Chambaere and colleagues, physicians reported having discussed the decision with the nurses in 54% of the cases of euthanasia or assisted suicide and in 40% of the cases of assisted death without the patient’s explicit request. 17 In our study, the involvement of nurses was restricted mainly to informing the physician about the patient’s condition or the patient’s and relatives’ wishes. It appears that the physicians who did consult nurses recognized their value as providers of information, acknowledging their function as intermediaries between the physician and the patient or relatives, but that the shared decision-making between physician and nurse was less common. We observed a similar level of involvement in the cases of life-ending drugs given without the patient’s explicit request. In such cases, the patient is usually no longer able to make a request because of exacerbation of symptoms or the progression of disease. 21 From our findings, it seems that physicians were no more likely to involve nurses in their decision-making when the patient was unable to communicate his or her wishes than when they were able to.

In previous surveys, physicians reported that nurses sometimes administered drugs explicitly intended to hasten death. 7^,9^,17^,22 Nevertheless, uncertainty remained about the understanding by the nurses of the act that they performed. In our study, nurses did administer life-ending drugs with the recognition that the death of the patient was intended. In the cases of euthanasia, 12% of the nurses administered the drugs. In the United States, where no legal framework for euthanasia is provided, 16% of critical care nurses 10 and 5% of oncology nurses 11 reported engaging in euthanasia. Similar findings have been reported in other countries. 14^,15 In our study, administration of the life-ending drugs by the nurse occurred more frequently in the cases without an explicit request from the patient than in the cases of euthanasia. Previous studies have shown that nurses believe an explicit request from the patient is required when accepting an assisting role in dying. 23^–25 However, a recent study showed that nurses were not necessarily averse to the possibility of administering life-ending drugs without an explicit request from the patient, to the point of accepting an active role in it. 18

Different points about our findings deserve further attention. First, we wonder whether nurses overestimated the actual life-shortening effect of the drug administration, especially when opioids were used, 26^,27 and whether the physician had intended to end the patient’s life when he or she ordered the nurse to administer the drugs. Nurses may have thought that they were ending the patient’s life, when in fact the drugs were intended to relieve symptoms in an aggressive, but necessary manner. However, incidence studies worldwide have shown that physicians reported administering opioids with the explicit intention of ending the patient’s life. 4^,28^,29

Second, we wonder why nurses more often administered the life-ending drugs in cases without an explicit patient request than in cases of euthanasia. Perhaps nurses took a more active role out of concern for frailer patients who could no longer communicate, or for very old patients because physicians are more reluctant to give assistance in dying when dealing with these patients. 30 Further, in cases of euthanasia, communication between the physician and the patient is common. When the patient can no longer communicate, nurses are, by the nature of their work, more directly confronted with the patient’s suffering and may therefore wish to take a more active role in life-ending acts. 18 We also have to consider that the administration of life-ending drugs without the patient’s explicit request may have included situations of terminal sedation or an increase in pain alleviation, in which the delegation by physicians to nurses to administer the drugs is considered common practice. 21^,31 Finally, although about half of the nurses’ reports indicated that there was no explicit request from the patient, it should be stated that the physicians and nurses probably acted according to the patient’s wishes. 4^,21

Third, the nurses we surveyed who administered the life-ending drugs did not do so on their own initiative. Although the act was often performed without the physician being present, it was predominantly carried out on the physician’s orders and under his or her responsibility. However, the administration of life-ending drugs by nurses, whether or not under the physician’s responsibility, is not regulated under Belgium’s euthanasia law and therefore not acceptable. In particular, when criteria for due care are not fulfilled, such as in cases where the patient has not made an explicit request, nurses, next to the physician, risk legal prosecution. Nurses may get caught in a vulnerable position between following a physician’s orders and performing an illegal act. Further, physicians who perform euthanasia are required to report their case to a review committee after the act. In a study of all cases of euthanasia in Belgium, Smets and colleagues found that physicians did not always report their cases and that unreported cases often involved the use of opioids and the administration of them by nurses. 32 It seems that the current law (which does not allow nurses to administer the life-ending drugs) and a control system do not prevent nurses from administering life-ending drugs. Therefore, professional guidelines are needed to help clarify their involvement in these practices.