A qualitative focus group study on legal experts’ views regarding euthanasia requests based on an advance euthanasia directive | BMC Medical Ethics

Nine legal experts participated, four in the first focus group and five in the second focus group (Table 2).

Four main themes emerged from the data: (1) the implications of an AED, (2) the role of other stakeholders, (3) the value of current expressions and (4) the responsibility of interpreting euthanasia requests (Fig. 1).

Themes emerging from the data

The implications of an AED

Switching from a verbal request to AED

Participants acknowledge the role of the AED under the Euthanasia law (Table 3, q1.1). However, it is crucial to first determine decisional capacity in the context of EAS before considering an AED as a replacement for an oral request (Table 3, q1.2). Patients expect that the AED will be used when they can no longer request EAS themselves; in other words, they expect it to substitute their voice in decision-making. Nonetheless, it was said that according to the UNCRPD, only supportive decision-making is conceivable in the case of EAS (Table 3, q1.3). As long as the patient can articulate their current wishes, those wishes should be explored since the AED primarily considers the patient’s wishes at the time of writing (Table 3, q1.4). Additionally, the importance of assessing decisional capacity at the time of writing is stressed (Table 3, q1.5), without this being a mere box-ticking exercise (Table 3, q1.6).

An AED as a source of information

Two sorts of information can be derived from patients’ AED: information on the desired time of execution, frequently linked to (fear for) a specific form of suffering, and information about patients’ viewpoints on (unbearable) suffering (Table 3, q1.7).

Legal value of an AED

The idea that a euthanasia request is settled by drawing up an AED is misleading. Regular conversations with a physician are needed to keep the request up-to-date and relevant (Table 3, q1.8), although the capabilities of patients with declining cognitive abilities to have such conversations are doubted (Table 3, q1.9). Patients should be informed about the relativity of AEDs, especially considering the complexity of predicting the future (Table 3, q1.10 and q1.11). Some participants request a better, neater phrasing of the AED in an attempt to prevent interpretation problems that could arise from ambiguous or unclear language (Table 3, q1.12). Certain others share the view that inconsistencies in the AED’s text should be avoided, yet they simultaneously acknowledge that complete avoidance may not be feasible (Table 3, q1.13). Suggested as potentially beneficial is to strongly recommend or even require patients to be advised by a legal expert when drafting their AED (Table 3, q1.14). The existing AED formats serve as mere examples; nevertheless, patients should be advised to include a personal supplement (Table 3, q1.15). Opinions vary regarding the level of precision in wording. Some participants believe patients should express their desires in a personalized and detailed manner to ensure their intentions are accurately captured (Table 3, q1.16), while others prefer a more general approach. They believe that using broader and less specific language will result in fewer legal inconsistencies or potential conflicts when interpreting the patients’ wishes (Table 3, q1.17).

The role of other stakeholders

Although representatives of the patient (such as a legal representative or family member) and other involved healthcare professionals (such as other physicians, nurses, psychologists, and spiritual counselors) can function as sources of information, the physician is said to be responsible for the final decision in the EAS process (Table 3, q2.1).

The role of patient’s representatives

The role of representatives in the decision-making process is defined as limited (Table 3, q2.2). Their help is needed in interpreting patients’ wishes and expressions, but they can never make the final decision (Table 3, q2.3 and q2.4). In cases where conflicts arise in interpreting the patient’s AED between the physician and the patient’s representative, the representative’s arguments should not be disregarded (Table 3, q2.5). It is suggested that conflicts of interpretation between patient representatives regarding the patient’s will can potentially be resolved through consultation with a colleague (Table 3, q2.6). In addition, attention must be paid to possible influencing of the will (‘undue influence’) (Table 3, q2.7) or conflicting interests of the representatives (Table 3, q2.8). Therefore, participants advise patients to assign a representative in their AED (Table 3, q2.9) and ascertain that this representative is adequately informed (Table 3, q2.10).

The role of other healthcare professionals

Participants confirm the valuable information other involved healthcare professionals can offer. Their input should not be set aside but is presumably already used in clinical practice (Table 3, q2.11).

The value of current expressions

Patients’ wishes can change over time, and it is, therefore, difficult to record explicit wishes in advance in an AED. Additionally, questions arise about how to interpret the (non-)verbal expressions of a patient with severe dementia.

Shifting will

Based on Human Rights Treaties, it is important to determine the patient’s current “own will and preferences” (Table 3, q3.1) since the formerly recorded wishes are only of relevance when the patient’s current wish cannot be ascertained (Table 3, q3.2). On the other hand, other participants argue that a patient’s ability to express their will diminishes during the dementia process, making the verification of the will legally complicated (Table 3, q3.3). Besides, some participants consider including Human Rights Treaties in the decision-making process to be an excessive demand on physicians (Table 3, q3.4). This expectation refers to the need for physicians to take into account not only national laws, such as the Euthanasia Law or Supreme Court rulings, but also international frameworks like Human Rights Treaties. Participants expressed concern that requiring physicians to consider these broader legal obligations could add significant complexity to their decision-making processes, making their role more challenging. Therefore, they state that as long as physicians act within the scope of the Euthanasia law, no human rights are violated (Table 3, q3.5).

Changing the perception of suffering

Participants argue that the degree of unbearable suffering should be assessed in the present. The former expectations of unbearable suffering play a limited role (Table 3, q3.6), as sometimes there appears to be no suffering, even though the situation described in the AED, which the patient perceives as unbearable suffering, occurs (Table 3, q3.7). Besides, hypothetical situations of suffering should be discussed in more detail before drafting up the AED (Table 3, q3.8).

Decisional capacity and the patient’s will

It was said that irreversible decisions leading to death, such as EAS, require a higher threshold for competence (Table 3, q3.9). Still, participants also highlight the challenge of verifying patient’s wishes for EAS, especially when facing progressive dementia (Table 3, q3.10). On the other hand, it was also stated that patients’ expressed wish for life is so fundamental and almost instinctive that it should take precedence over an AED, considering the patient competent in the matter to express their “own will and preferences” now (Table 3, q3.11).

The responsibility of interpreting euthanasia requests

Judging whether a case meets the due care criteria is an interpretative process. It was suggested that much comes down to interpreting the patient’s will rather than establishing it (Table 3, q3.12), and the interpretation is thus subject to the subjectivity of the listener (Table 3, q3.13). Furthermore, participants argue that the interpretation of a patient’s AED or their current (non)verbal expressions is beyond the knowledge and competence of a legal expert (Table 3, q4.1). Therefore, some of the participants place the responsibility for this interpretation with the physician (Table 3, q4.2). While the participants are well aware that the physician must consult various sources to reach a final decision, a widely shared argument is that the physician is seen as the “master of interpretation” in the decision-making process (Table 3, q4.3).

Careful assessment of the due care criteria

From a legal perspective, the judgment of whether the due care criteria are fulfilled is relatively straightforward, as EAS cases are reviewed in hindsight within the legal framework of the Euthanasia law (Table 3, q4.4). The physician must be able to carefully substantiate their decision-making process (Table 3, q4.5), within the leeway provided by the law. Caution is advised to physicians in case of doubts about the voluntariness or thoughtfulness of the request (Table 3, q4.6). Regarding the decision-making process, some participants suggest using medical professional standards as a potential guide for physicians (Table 3, q4.7). However, it was also emphasized that these guidelines should allow for flexibility, accommodating physicians’ personal assessment and contemplations (Table 3, q4.8).

Legal protection of physicians

The legal protection of physicians to make these kinds of complex decisions is stressed (Table 3, q4.9). This protection aims to shield physicians when providing EAS based on an AED for patients with dementia, ensuring that such actions are not considered a patient’s right or a physician’s duty under the law. However, there are concerns about how well this protection is perceived and understood by physicians (Table 3, q4.10).