Dementia,End of Life,and Euthanasia: A Survey Among Dementia Specialists Organized by the Belgian Dementia Council

Dementia and advance care planning

All the interviewed physicians reported that they were committed to discussing ACP with their patients, but in practice most of them did so with only a minority of patients. The majority of participants (10 out of 17) said they discussed the topic with less than 50% of their patients (see Table 1). The respondents said that ACP discussions most often took place during the mild stage of dementia, in general not at diagnosis but during follow-up, presumably when a relationship of trust between doctor and patient had been established, or when there were medical complications. The respondents said that the subject was most often raised by the patient’s family, followed by the physician and then the patients. Most physicians (94%) felt comfortable with ACP. The only physician who answered No to this question said that, although useful, discussing ACP remains difficult and stressful.

The respondents reported slightly different patterns for patients and relatives in terms of the questions asked in the context of ACP (see Table 1 and Fig. 1). Patients and their relatives were most interested in the speed of decline and, to a lesser degree, concerned about the signs of severe dementia, recognition of close relatives and communication. However, relatives asked more questions about the time before death and institutionalization, risk of aggressiveness and suffering in severe dementia than did the patients. In the Other category for this question, two physicians mentioned that patients asked questions about the end of life and euthanasia.

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Fig.1

ACP discussions with patients and relatives. X-axis: issues discussed (as displayed); Y-axis: adherence score = 1- (mean answer – 1)/(nb. options – 1) with max = 100% and min = 0%

All participating physicians said they were in favor of palliative care, including palliative sedation, for patients with dementia who are suffering physically and most (88%) also in cases of psychological distress, including autoaggressive behavior. Eighty-three percent of participants said they were in favor of transfer to a palliative care unit (PCU). However, in practice, only about half of the physicians said they had already transferred patients with dementia to a PCU, mostly because they believe that PCU staff do not have enough expertise in management of severe dementia or because they preferred to continue taking care of their patients in the terminal stage.

Dementia and euthanasia (Belgian Act 2002)

Thirteen of seventeen physicians (76%) said they approved the 2002 Law on euthanasia in principle and only three said they were against it (see Fig. 2). Most of the respondents said that their point of view was influenced by personal opinion, but they did not develop this statement. Although most of the physicians (14 out of 17) said they had already discussed euthanasia with their patients, such discussions were conducted with relatively few of their patients: less than 1% for five physicians, 1 to 10% for another five, and 10 to 50% for the remaining four. Most of the time it was the patient and, less frequently, the family who initiated the discussion. In most cases, these discussions were held with patients with a mild stage of dementia and less often at other stages, including mild cognitive impairment. The respondents said that the most frequent question asked by the patient concerned whether they could decide to end their lives at the severe stage of the disease and whether the doctor would be willing to help them. The respondents said that the same question was also often asked by families, with more stress on the practical procedures. Only 53% of physicians said that they were comfortable with questions about euthanasia, the remainder commented on the difficulty of such discussions.

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Fig.2

Percentage of participants in agreement with the Belgian 2002 Law on euthanasia and with a potential extension of this Law allowing advance directives for euthanasia in dementia.

Most of the respondents (94%) said that they believe patients and their families are poorly informed about the conditions of the current Law on euthanasia and 82% of them said they would like their patients to be better informed. The most commonly reported misunderstanding was the belief that euthanasia is automatically part of ACP and gives the patient the right to benefit from euthanasia when they reach a severe stage of the disease. In other words, patients and their families believe that the current Belgian Law permits euthanasia even if they are no longer able to reiterate the request. Most physicians (10 out of 16) have already been confronted at least once with a request for euthanasia from a patient with dementia that did not fulfil the legal criteria, but these instances were rare events: only two physicians had received more than 10 invalid requests since 2002. By contrast, a larger proportion of physicians (15 out of 17) declared having been solicited with requests of euthanasia from patients with dementia that were within the Belgian Law. Nevertheless, none of the participants had received more than 20 requests during the twelve years since the Law on euthanasia has been in application. For these valid situations, euthanasia had been performed on less than 10 patients per physician (Table 1 and Fig. 3).

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Fig.3

Number of requests and number of euthanasia performed from patients with dementia within the Belgian Law. X-axis: estimate number of euthanasia requests the physicians participating in the survey declared having received during the 2002 to 2013 period (white bars) and number of cases they found the euthanasia demand acceptable according to the Belgian Law (black bars); Y-axis: percentage of participants to the survey having answered to each of the six possible choices (the sum is 100% for the grey and the black bars, respectively).

The respondents’ opinions appeared to be divided on the question about the stage of dementia at which euthanasia can be performed according to the Law: 38% stated that euthanasia is permitted until a mild stage, 38% believed that it is permitted until a moderate stage, and the remining minority stated that euthanasia can be considered up to a severe stage or only at the MCI stage.

Of the 13 physicians who had been confronted with a valid request for euthanasia and who answered the question as to whether they had performed the act themselves or not, only seven said they had performed the euthanasia act, two had assisted a colleague, and four had referred the patient to another physician, which is in agreement with the Belgian Law. The four physicians who referred the patients to another colleague stated that they have done the same for all the requests they had received. The cited reasons for this decision were variable: outright refusal, the patient’s or family’s choice, not feeling able to do it, and religious beliefs.

Extension of the 2002 Belgian Act for Dementia Patients (EBA)

More than half the respondents (65%) were against an extension of the current Law to permit patients with cognitive disorders to arrange euthanasia for a later, more severe stage (see Fig. 2). This position contrasts with the large acceptance of euthanasia within the current Belgian Law (Fig. 2). Of note, there was no significant difference between the “in favor” and “against” EBA groups in terms of sex, linguistic community (French versus Dutch speaking), specialty (neurologists versus other), practice (university setting versus other), years of professional experience, number of patients with dementia seen each year, or percentage of patients seen with severe stages of dementia. The “in favor” group was slightly younger (mean 47.8 years) than the “against” group (mean 50.9 years) but the difference did not reach statistical significance (p = 0.551). Several reasons were cited by the “against” group, the most frequent being that EBA “does not answer the patients’ expectations” followed by the difficulty of finding a consensus on selection criteria and the preference for palliative care by a PCU. Moreover, some respondents considered that an EBA was “useless”, implying that the majority of physicians who are against an extension of the Law (9 out of 11) believe that such an extension would not meet patients’ needs. The six specialists who said they were in favor of an EBA also said that a consensus on the criteria for eligible patients is possible, whereas five of the eleven respondents who were against an EBA said they thought this consensus was not possible. The physicians who said they agreed with an EBA were largely in favor of using the criteria chosen by the patient in his/her ACP. They proposed that patients could define in their ACP their personal criteria for the moment at which euthanasia should be performed if they were no longer able to repeat the request.

When all physicians, regardless of their opinion on an EBA, were asked whether they were ready to perform euthanasia if the Law were extended and if yes under which conditions, the answers were conflicting (see Table 1 and Fig. 4). Willingness to performing euthanasia in this context did not perfectly match the physicians’ previously stated opinion. Slightly more than half of the opponents to an EBA said that they were ready to perform euthanasia if the Law is extended, although in most cases they said they would require some conditions to be met. Among those favorable to an EBA, only half said they would be willing to perform euthanasia unconditionally, the remaining either said they would need certain conditions to be met or that they would not do it (one participant). The conditions required by 6 out of 17 participants, regardless of their stated opinion, included making sure the patient is able to confirm his/her choice, knowing the patient and his/her family doctor well, confirmation required from colleagues and an evaluation of the patient’s decisional capacity by a team of “specialists”. A large majority of participants in both the “in favor” and “against” an EBA groups therefore stated the need for confirmation of the patient’s wish in case of progression of dementia (Fig. 4).

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Fig.4

Willingness of physicians to perform euthanasia on basis of ADE in case of dementia according to their position of principle on this issue. The participants are segregated according to their prior position (in favor – grey bars - or against – black bars - an extension of the Law to allow euthanasia on basis of ADE in dementia). The four graphs display: their willingness to perform euthanasia based on ADE supposing that the Law has changed, the need for confirmation of the patient’s wish in case of progression of dementia, the relatives’ and respectively the staff roles in the decision process; Y-axis: adherence score = 1- (mean answer – 1)/(nb. options – 1) with max = 100% and min = 0%; YES-C = YES with conditions.

The responses concerning the need for participation of relatives and paramedical staff in the decision making about euthanasia were mixed. A majority of respondents (59%) said that it was important to include close relatives of the patient in the decision-making process. However, only 3 out of 17 participants believed the relatives should participate without conditions, whereas 7 said they should participate with some conditions and another 7 were against family participation. There was little difference in the responses according to the respondents stated position on an EBA. Those who agreed with a conditional participation of the relatives stressed the need to inform and consult them but warned that the final decision should respect the patient’s will. The most frequently cited reasons to involve relatives were an explicit request from the patient to do so, to give them the chance to formulate their—however non-binding—opinion and to help choose the most opportune moment. When asked about participation of the paramedical staff, opinions were almost evenly divided (about half in favor, the remaining against), with slightly more positions against participation of the paramedical staff in the group of respondents who said they were against an EBA (Fig. 4). Only one physician stated that the euthanasia should be a “specialized team decision”. Many physicians also warned that participation of a third party (family or paramedical staff) in the euthanasia decision should strictly follow the legal requirements, whatever they are, in the context of an EBA.

Dementia and advance care planning

The first part of our survey dealt with ACP, as this is a framework that enables consideration of euthanasia in patients with dementia. All participants said that they agreed on the importance of ACP and most said they were comfortable with ACP discussions. However, the same physicians said that they did not very often discuss ACP in practice. It is not clear why they were so reluctant to apply what they approve in principle, but there were some indications suggesting that physicians prefer to wait until the patient or relatives take the initiative rather than taking the lead. The patients were reported by the physicians as being more interested in the speed of decline and less so by issues related to the end of life. We can speculate that these are highly emotional matters for patients and physicians, which probably explains the unwillingness to tackle the subject. Moreover, the fact that relatives are more eager to know about the subject than patients may discourage the practitioner who does not want to deal with such important issues without the consent of the patient. One should not overlook the fact that patients with dementia are “special” in that they are often partly unaware of their deficits, which certainly contributes to the difficulties of discussing ACP. According to the literature, although physicians are not insensitive to a patient’s right to take decisions about his/her own life and consider it important to address ACP, these discussions are still rarely held in practice [7]. Evans and coworkers [8] showed that only 25% of Belgian patients with chronic diseases discuss end of life planning with their general practitioners. In the case of cognitive disorders, the topic was addressed more frequently than in other countries but often during the progression of dementia rather than at the beginning [8]. Other studies have shown that ACP is not sufficiently employed in clinical practice [4, 9–11] and that its absence represents an obstacle for optimal end of life management [12]. In practice, most patients with dementia are excluded from active participation in these discussions, and their close relatives are asked to address these questions in their place [11, 13], with strong emotional implications and the evident risk of discordance between their opinions and the patient’s wishes [11, 14].

Similar to the situation with ACP, when physicians were asked about their opinion on palliative care in general, they all said that they were in favor of it for patients with dementia and physical suffering, and a vast majority of them also in case of psychological distress. But again, this stance was not reflected in clinical practice, with only half of the participants saying that they regularly transfer their patients to PCUs. Several publications have noted that palliative care for patients with dementia is still underdeveloped [15] and that its rationale is not well defined compared to the situation for other neurological pathologies [16, 17] although families benefit from early palliative care discussions [18]. Evans and coworkers [19] reported that the palliative care option was proposed much less frequently in patients with dementia (39%) than in those with cancer (81%). Even when palliative care specialists are consulted for patients with dementia, issues regarding the end of life are addressed less often than with cancer patients [13]. In agreement with the responses of the participants in our survey, several authors have commented on the inadequacy between the needs of dementia patients and proposed therapeutics at the end of life [15, 21], which may explain why some of our dementia specialists said they preferred to continue to care for these patients rather than refer them to a PCU.

Dementia and euthanasia (Belgian Act 2002)

The main topic of our survey focused on euthanasia and its applicability in patients with dementia. This subject was a much more divisive matter, although most participants (76%) said they were in favor of euthanasia as delineated by the current Belgian Law. Practitioners were clearly less comfortable discussing euthanasia (53%) than they were discussing ACP (94%). In fact, the survey revealed that despite being confronted with a large number of patients with dementia, our specialists received very few demands for euthanasia: less than 1% of their patients. This relative lack of demand was an argument used by those who were against an extension of the Law for patients with dementia. However, one cannot exclude other explanations, since reluctance to discuss end-of-life issues is widespread and probably applies to both patients and physicians.

Interestingly, a majority of the physicians said that a demand for euthanasia by a patient with dementia could be considered acceptable according to the 2002 Belgian Law if the patient was still “mentally competent” to make this decision at the moment of the request. This position is in agreement with the concept of a gradual and progressive loss of competency in dementia, rather than an “all-or-nothing” model [22]. However, the experts’ opinion varied widely on the question about the stage of dementia until which euthanasia, according to the current Law, is still applicable. This jurisprudential opinion of Belgian physicians about the validity of euthanasia in dementia patients also emerged from reports by the Belgian CFCEE [23]. In 2014, 4% of the terminal diseases in patients who underwent euthanasia were “neuropsychiatric”, most of them suffering from dementia (the percentage is lower –1.8% – in the last report of 2018, but with the evolution of jurisprudence some patients may have been included in the “polypathologies” section and are no longer identifiable as such). The same proportions have recently been reported from the Netherlands: 4% of euthanasia requests were from patients with dementia [24]. Although the physicians who answered our survey appeared to agree with euthanasia demands from patients with dementia under certain conditions, they also said that they were sometimes confronted with requests that did not meet the legal specifications. A key reason why they believed inappropriate requests occur was the fact that the provisions of the current Belgian Law on euthanasia seem to be misunderstood by patients and their relatives. The physicians said they had often met patients and families who believed the patient had the right to undergo euthanasia in the later stages of dementia because he/she had proclaimed it at an earlier stage or made an advanced declaration of this wish (“he said he did not want to live like this”). In fact, this condition is only possible in cases of “irreversible coma” according to the Belgian Law, and not in severe dementia (by contrast with the Dutch Law which allows it in both cases). Requests for euthanasia by patients with dementia that received a positive answer from the physicians were rare events: less than 10 patients per physician over twelve years. Moreover, only about 50% of the physicians confronted with these demands actually performed the euthanasia themselves, which again reveals how sensitive this matter is.

Extension of the 2002 Belgian Act for Dementia Patients (EBA)

Some associations, professionals, and political players in Belgium have advocated an extension of the Law in order to allow euthanasia to be performed in patients with dementia on the basis of an existing ADE. Most of the specialists who participated in the present survey were against this proposal (65%), although the majority (76%) agreed with the original 2002 Belgian Law on euthanasia. There were no obvious differences between those in favor and those against an extension of the Law in terms of age, sex, mother tongue, specialty, type of practice or the percentage of patients with severe dementia seen, although, arguably, the sample is too small to make confident conclusions. The most cited argument against the extension of the current Law to patients with dementia was that it would not meet the patients’ needs, followed by the difficulty in finding a consensus on selection criteria. A preference for other forms of palliative care only came in third position. Doctors who were in favor of an extension of the current Law (35%) proposed that euthanasia should only be considered as part of ACP. Irrespective of their position in principle, two-thirds of the participating physicians said they would agree to practice euthanasia on patients with dementia if there was an extension of the current Law, but most of them said they would require, in addition to an ADE, that patients should be able to confirm their choice. These observations confirm the contrast observed in earlier studies between medical opinion on one side and that of the caregivers and the general public on the other [24–27]. A general survey performed at the request of the Flemish lobby group, “Recht op Waardig Sterven” [28] which included 536 Flemish subjects, showed that over two-thirds of them were in favor of euthanasia in case of dementia on the condition that a written declaration had been established in advance. More recently, a survey published in the Belgian French-speaking newspaper, “La Libre Belgique” [29] showed that of 2,714 Belgian citizens, 79% were in favor of euthanasia for patients with Alzheimer’s disease if they were no longer capable of making the request themselves. In a survey a higher proportion of elderly individuals without dementia said they would prefer treatment withdrawal if they developed dementia than if they developed cancer, suggesting that physical deterioration is feared less than cognitive decline [19]. In a study on differences between relatives and professionals on issues related to end-of-life decisions in dementia, when asked whether euthanasia was acceptable for a patient with severe dementia who had made an advance declaration, the family (89%) and nursing staff (57%) of institutionalized patients were generally in favor, but not the physicians (16%) [26]. This divergent approach, depending on the respondent’s role, was similarly reported in another study [30], at least for patients with severe dementia. De Boer and coworkers [31] reported that none of the 434 Dutch physicians in charge of institutionalized patients had performed euthanasia on patients with severe dementia who had written an advance declaration, although this practice is legally permissible in the Netherlands. The unenthusiastic attitude of Dutch physicians toward euthanasia in advanced dementia based on an ADE was recently confirmed [30]. An ADE seems to be insufficient for physicians who require, in addition, that the voluntary nature of the patient’s request and the presence of unbearable suffering are established [30]. In a recent review, Tomlinson and Scott [32] reported a divergence of opinions on attitudes toward assisted suicide among caregivers, patients, family members, and the broader public with respect to the stage of dementia and the existence or not of an advance request. Gastmans and coworkers [33] explained the observed divergence in opinion among professional caregivers and families and friends by the fact that physicians evaluate a patient’s quality of life at a given moment, whereas family and friends measure this concept in the light of the patient’s whole existence. When considering the general public, they appear to project onto patients their own ideas and fears about the loss of autonomy related to dementia [33].

The nature of dementia, with a prolonged course, high variability in evolution from one patient to another and the frequent presence of behavioral disturbances makes the anticipation of end of life decisions by patients and by their entourage more subtle than in other conditions [21, 34]. Among the potential obstacles, there can be difficulties in the correct evaluation of the patient’s psychological stress and communication skills, as well as anosognosia [16, 35–37]. A considerable percentage of patients with dementia, ranging from 20 to 80%, suffer from varying degrees of anosognosia [38, 39]. Several studies have shown a positive correlation between anosognosia and quality of life scales in moderate dementia [40, 41], but not at earlier stages [40, 42]. The degree of concordance between a patient’s perception of his/her quality of life and that of family members appears to be influenced by the degree of anosognosia. For patients, the more insight they have lost, the higher their quality of life score becomes, in contrast with their close relatives who consider the patient’s quality of life to be progressively lower as the dementia evolves [40–42]. Overall, caregivers have a tendency to underestimate the patient’s own perception of quality of life [43], although the observed difference is less marked if the evaluation is done by a nurse who has regular contact with the patient [44]. Differential perceptions of the quality of life and degree of suffering of a patient with dementia contribute to physicians’ reluctance to perform euthanasia on patients with dementia, especially when other means of reducing suffering have not yet been exhausted [7, 45]. For example, diagnosing and treating depression are pillars in the management of patients with dementia [41, 47], and reduction in neuropsychiatric symptoms can help support patients and caregivers [41]. A better understanding of the disease by caregivers also contributes to a better quality of life for the patients [48, 49] and could help caregivers to have a more positive view of their loved ones’ quality of life [41]. This educational aspect is an important point to be taken into consideration in ACP [34, 49].

Before concluding, we acknowledge that our survey has limitations. First, the sample size is small and highly selected (expert specialists in dementia). Nevertheless, we believe the results are valuable because of the high exposure and experience of these physicians (500 patients with dementia per year), their particular concern with this issue and the common practice they have in Belgium. Second, our observations cannot be generalized to other doctors, in particular to GPs, who have many demands for euthanasia and may not have exactly the same feelings as specialists, as recent studies have shown [24]. In particular, GPs may be more exposed to severely impaired patients with dementia in nursing homes than the specialists in this survey, making them more favorable toward ADE. The latest report of the CFCEE [23] shows that the GP is the first to give an opinion in most dementia patients who underwent euthanasia. Third, the participants were able to discuss these issues extensively during the seminar preceding the survey, which may arguably have influenced their original opinions. Although we cannot exclude this possibility, this may also have resulted in more thoughtful and informed answers.

In conclusion, despite the limitations, the contribution of this survey to the debate about end-of-life management of patients with dementia including euthanasia can be summarized in three points:

First, the survey reveals a fairly wide diversity of opinion among practitioners, despite very similar professional experiences. This presumably reflects the sensitive and subjective character of this issue and, probably, the weight of personal values in the balance.

We believe that the results of this survey bring useful and nuanced information to enrich the debate on this topic and will promote increased awareness of this complex and important issue.