Belgium: Bioethics Advisory Committee in favour of extending advance euthanasia declarations to persons who have become incapable of deciding for themselves

More specifically, this concerns persons with neurodegenerative diseases (Alzheimer's, Huntington's disease, Parkinson's, etc.) and people with brain damage (e.g. following an accident or stroke), who would like – before their ability to decide and express themselves is too impaired – to ensure that they can be euthanised when they reach a situation such as that described in an advance directive. 

To date, these individuals can obtain euthanasia based on a current request, at the onset of their illness, when they are still capable of making decisions. The only situations in which a request for euthanasia based on an advance directive could be granted are comatose or vegetative states that are deemed irreversible. 

The 82-page opinion reflects in-depth consideration of the suffering experienced by the patients concerned and the social perception of these pathologies. Several experts specialising in palliative care or various forms of neurodegenerative diseases were consulted. The first pages of the opinion present the difficulties of applying euthanasia to patients based on an advance euthanasia declaration. 

One of the main ethical issues rightly raised by the committee is that a possible extension of the law could reinforce ‘the already prevalent negative image of people with dementia’. As the Committee points out, referring to a study from 2020, ‘the results of assessments of the quality of life of people with dementia are generally less favourable when the assessment is carried out by relatives and carers than when it is carried out by the people with dementia themselves.’ 

Another risk highlighted by the committee is that focusing on the patient's advance request to die could undermine efforts to relieve their suffering, even when ways of doing so exist. 

The societal and medical context and the cases cited as examples highlight the great complexity of the issue. The central question is where the autonomy and will of these patients lie: in the advance directive, or in their attitude to life at the moment when the question of euthanasia arises? 

The Committee recommends "considering the advance directive as a triple presumption of : 

• the persistent nature of the request for euthanasia, made voluntarily, after careful consideration and without pressure by the signatory, provided that it is drafted in accordance with the legal framework; 

• the complex suffering that the patient believes results from the sudden or gradual loss of their ability to decide for themselves following an accident or illness; 

• the anticipated unbearable nature of this suffering, once the effects of the illness reach one or more thresholds clearly identified and described by the person concerned in their advance directive. 

However, there is no consensus within the Committee as to whether this triple presumption is refutable or not, and this will have to be decided by the legislator. 

An attentive reader of the opinion will no doubt notice the turning point in the reasoning presented (p. 44): the Committee considers that, since the current law does not cover all situations of suffering experienced by these individuals, the advance declaration of euthanasia should be extended to these patients. From the outset, the central question for the Committee then becomes: under what conditions would euthanasia for these patients based on an advance declaration be ethically acceptable? 

Critical observations 

It is important to ask the following question: is the law intended to respond to all suffering, given that suffering is ontologically linked to human beings? Is euthanasia ultimately intended to ‘respond’ to all suffering that remains unalleviated? Is there not a risk of eliminating the sufferer in an effort to eradicate all traces of suffering? 

The question that repeatedly arises in the Committee's writings is whether to take into account the wishes expressed in the advance directive or the wishes currently expressed by the patient, even at an advanced stage of dementia. But why should the unbearable nature of suffering be assessed in any other way than in the current situation? 

The argument of injustice (or lack of fairness) towards people who would be ‘forced to request euthanasia as soon as possible’ comes up repeatedly in the opinion. Instead of broadening the scope of advance directives, should we not question the possibility of euthanasia for those who, admittedly, “die too soon” but decide to die based on the anticipation of future suffering? Should we not free them from this dilemma by considering that their suffering is not currently unbearable (but refers to a future or even hypothetical situation)? Most of the cases cited by the committee attest to a clear evolution and acceptance on the part of the patient in relation to the situation they are experiencing. 

The opinion draws on various authors to distinguish between a person's critical interests (commitments and values, as expressed in particular in the advance directive for euthanasia) and their experiential interests (current capacity to feel pain and pleasure). When the two types of interests diverge, which should be given priority? What if the person's values were subject to change over the course of their life experience? 

It is on this point that there is disagreement among the members of the Committee: some would like to apply the advance directive on euthanasia even if the patient seems to accept the current situation, out of respect for the values expressed in the declaration at the time. In other words, euthanasia would be performed even if the patient does not confirm that they want to die, or even if they oppose being euthanised. Other members of the Committee believe that the patient's wishes should be reassessed in light of their current experience, particularly in cases where they appear to have a certain joy of living. 

The Committee leaves it to the legislator to decide whether or not the presumption constituted by the advance declaration of euthanasia is rebuttable. Even if this presumption is considered rebuttable, it will be up to the legislator to determine who (the doctor?) has the final decision on whether or not to apply the declaration (euthanasia). 

It should be noted that the extension of euthanasia to cases of advanced dementia is included in the government agreement. It is therefore likely that the CCBB's opinion will revive and fuel discussions on this subject in the House of Representatives. 

See on this subject, the Opinion of the European Institute of Bioethics requested by the Health and Equal Opportunities Committee of the Belgian House of Representatives on the draft law of 4 September 2024.