Preparing advance euthanasia directives

Preparing an AED is a more complicated task than making an immediate request for EAS. Besides determining whether she wants to die in this manner, the patient must project herself into the future to weigh the pros and cons of uncertain events. The patient must also specify a ‘trigger’ point for implementation. Was Mrs A capable of this task, and did she in fact perform that task satisfactorily?

First, it is not clear that Mrs A possessed adequate decision-making capacity when she wrote and revised her AED. The RTE endorses a functional capacity framework in which someone is deemed capable if he is ‘able to understand relevant information about his situation and prognosis, consider any alternatives and assess the implications of his decision'.11 This is similar to the framework developed by Grisso and Appelbaum,12 which is widely used in the US and other jurisdictions. Studies using the functional capacity framework show that most patients with Alzheimer’s disease are incapable of making treatment and research decisions,13 including simple decisions regarding medication for Alzheimer’s disease.14 Even mild cognitive impairment (a condition that precedes Alzheimer’s disease by 3–4 years15) can cause significant impairment in decision making,16 with 40% of patients lacking capacity for research decisions.17 Mrs A’s symptoms had begun 9 years prior to her death; she was formally diagnosed with Alzheimer’s disease 5 years later. Thus, even at the time of diagnosis, she would have been at high risk of incapacity.

Second, there is evidence that Mrs A’s impaired abilities contributed to the use of confusing language in her AED. Mrs A’s first AED, written shortly after her Alzheimer’s diagnosis, contained conflicting statements. She said she wanted EAS "when I am still at all mentally competent" (seeming to imply a desire to make the decision herself sometime in the future), but also stated, "Trusting that at the time when the quality of my life has ended up in the above-described situation, I would like to undergo voluntary euthanasia" (seeming to imply a directive based on quality of life). She revised her AED 3 years after her Alzheimer’s diagnosis, at a time when her abilities would have deteriorated even further. The new AED referred to "whenever I think the time is right" and "when the quality of my life has become so poor, I would like for my request for euthanasia to be honored". With this change, did she intend to remove the ambiguity in the first version and replace the previous instructional directive with a request to receive EAS only at her contemporaneous request? It is puzzling that her family physician was apparently not able to clarify to the RTE the patient’s intent, despite her belief that Mrs A was competent to change her AED.

Third, there is little evidence that Mrs A actually weighed the relevant pros and cons of requesting future EAS. Mrs A mentions that she saw her mother decline from dementia and did not want to experience a similar fate. Although this is certainly one important form of knowing about dementia, there is no evidence that she incorporated other relevant information into her request, perhaps because she was too impaired (especially 3 years after her diagnosis) to appreciate other relevant information. It is not easy to predict the experience of mental decline or its future effects on one’s quality of life. Personality changes due to dementia will vary, and a person may experience moments of lucidity, showing her ‘old self', even with severe dementia.3 Anticipating the burden of future health decline is complicated because people underestimate their ability to adjust to their health states after developing disease or disability.18 An AED written when one is no longer able to imagine and incorporate how one might cope with a given condition has limited validity. Additionally, this lack of information may be reinforced by prejudicial attitudes towards disease and disability, with images of incontinence, confusion, agitation and loss of mobility, rather than a more balanced picture incorporating the pleasures and enjoyment that many patients experience.3 19

Two features of the Dutch EAS system work against optimising the validity of AEDs. First, physicians and the RTE accept a low threshold of decisional capacity for preparing AEDs. The RTE’s Code of Practice states that in early dementia, "the patient generally…is decisionally competent in relation to his request for euthanasia".11 This apparent presumption of capacity in early AD (and in the case of Mrs A’s second AED, a much more advanced state) is incompatible with existing data on Alzheimer’s disease and decisional capacity. Dutch physicians, as in this case, tend simply to assert their capacity judgement without detailed justification, even when EAS is requested by persons at elevated risk of incapacity.20

The second feature of the Dutch system that may promote suboptimal preparation of AEDs in patients with dementia is the law’s failure to require an independent consultation for patients preparing AEDs, as it does for physicians implementing AEDs and physicians assessing requests for contemporaneous EAS. But this presents a paradox: given that the patient’s desire for EAS is expressed at the time of writing the AED, rather than when EAS occurs, a particularly controversial form of EAS request by a cognitively vulnerable patient receives less scrutiny than does a contemporaneous request by a cognitively intact person.

Applying advance euthanasia directives

Mrs A’s case also illustrates the challenges in applying AEDs to patients with dementia. Some of these challenges are related to flaws in the preparation process. As mentioned earlier, Mrs A’s AED contained notable ambiguities, and it was unclear whether she wanted the AED document alone to satisfy a euthanasia request. Furthermore, interpreting AED activation criteria can be difficult even when the preparer supplies consistent directions. Activation criteria that are too broad will place the burden of interpretation and decision making on the family and physicians.2 On the other hand, overly specific criteria may fail to encompass the full range of symptoms the patient seeks to avoid.

Mrs A’s case also highlights a more fundamental challenge to applying AEDs: the ‘then-self versus now-self’ problem.21 As cognitive abilities of patients with dementia decline, they typically forget about their AEDs and the requests the documents contain. What matters to them as patients with later-stage dementia will ordinarily be different than what mattered to them when they prepared their AEDs. As a result, the decision to perform euthanasia can be contrary to their interests and preferences as patients with dementia. Some writers, such as Ronald Dworkin, contend that the competent person’s interest in securing a death consistent with her personal values should take priority over her later welfare interests as an incompetent patient.22–24 Others, including us, are critical of this view and favour limiting the authority of advance directives when they conflict with the incompetent patient’s current welfare and wishes.24 25

The ‘then-self versus now-self’ problem is a long-standing philosophical debate that we cannot resolve in this paper. However, we note that existing medical and legal norms do assign considerable weight to a person’s current preferences and welfare interests, rather than giving absolute authority to an advance directive in making life-or-death decisions. Dworkin himself recognised a limit on the authority of advance directives (eg, in the case of advance refusals of pain-relieving treatments).22 25 Moreover, the RTE Code of Practice stipulates (box 1) that the physician may not follow an AED if the incapacitated patient shows signs of resisting or objecting to EAS, and the statute’s unbearable suffering requirement still applies to these patients.11 And, as noted above, many Dutch physicians, even those who are advocates of EAS (including at least one who works with the End of Life Clinicⁱⁱ), strongly oppose AED authorisations of EAS.8 In many healthcare settings, resolving a conflict between an advance directive and contemporaneous patient interests and preferences would lead to a more formal evaluation process in which multiple individuals, including ethicists, institutional officials and sometimes legal authorities, would decide how best to proceed. Determining the relative weight of a patient’s advance directive request and that patient’s current welfare interests and preferences is a complex task, one that we believe should not be left to an individual physician’s judgement.

The geriatrician in Mrs A’s case prioritised Mrs A’s advance euthanasia directive over her later assertions that she was not ready to die. The geriatrician also regarded the patient’s previous euthanasia request as an adequate basis for using deception and coercion in carrying out the AED request. Furthermore, according to the geriatrician, Mrs  A’s conflicting statements about euthanasia were ‘not relevant’ because they reflected her lack of awareness and insight. It is concerning that the Dutch system of retrospective review made it possible for the geriatrician to implement her own solution to a long-standing philosophical dispute with no more input than the non-binding opinions of consultants (who were at any rate unaware of her use of deception and coercion in Mrs A’s euthanasia).

A final question is whether Mrs A was experiencing intolerable suffering as the Dutch EAS law requires. The physicians involved in Mrs A’s case believed that she was, and the RTE affirmed this finding, noting that ‘to reach this conclusion it is not necessary for the patient to suffer intolerably every minute of the day'. This declaration is an insufficient response to the intolerable suffering question, for it speaks only to the evidence that is not needed to support such a finding. The RTE should have explained in greater detail why the evidence in this case was sufficient to establish the patient’s intolerable suffering. Although it is true that Mrs A suffered daily periods of distress, she also had daily periods in which she appeared happy and content. Every human life has its ups and downs. When do the burdens of life with dementia become sufficiently heavy to justify a finding of unbearable and irremediable suffering? At minimum, Mrs A’s case points to a need for a more thorough examination of this question.