Adjust the euthanasia law at last

For nearly 25 years now, there have been calls to remove this restriction. It is currently receiving considerable media attention thanks to the petition submitted to the Minister of Justice following the premature euthanasia of Lode Deconinck, a man with young-onset dementia. More than 92,000 signatures have also been collected on LEIF in support of this legislative amendment. The societal backing is therefore overwhelming. More than 80 per cent of the population supports it, and more than 60 per cent of doctors would wish to have this option available for themselves.

At present, euthanasia in early-stage dementia can only take place too soon—before it is too late. In other forms of acquired incapacity that arise suddenly, such as after a cerebral haemorrhage, it cannot be requested “too early” at all, which is discriminatory in comparison with dementia. Out of respect for self-determination and to prevent future suffering, this legislative amendment must be adopted. With full understanding for those with early-stage dementia who would not wish to make use of it. They, incidentally, deserve far better support than is currently the case.

There are sufficient counterarguments to address the traditional reservations of those sceptical about this amendment. The claim that abuse must be prevented does not hold. After all, it is the patient who has drawn up the advance directive. Where, then, lies the risk of abuse? In intensive care units, end-of-life decisions are taken daily—and even unilaterally—for patients who lack capacity. The precise timing of euthanasia during incapacity is said to be difficult to determine. Yet if a patient has recorded that it may take place when they no longer recognise their family for a certain period, is that not unambiguous? And if, at that moment, the patient happens to be smiling in the sun, the doctor can always postpone it until a moment of severe deterioration.

It also borders on arrogance to judge, as an outsider, the unbearable suffering of another person. Although it is uncertain whether patients in a coma suffer, euthanasia may in Belgium be carried out on them on the basis of an advance directive. In the Netherlands, where euthanasia based on an advance directive is possible in any form of acquired incapacity, it is permitted only in cases of “hopeless and unbearable suffering”. As this cannot be determined in comatose patients, euthanasia is therefore not performed on them there.

In Belgium, moreover, the motivation for drawing up an advance directive is not limited to avoiding unbearable suffering. People also wish to avoid an end-of-life situation that, by their own standards, is undignified and degrading. The difficulty of determining the exact moment is never contested in the case of a prior “negative” advance directive, as provided for by the Patients’ Rights Act. This allows individuals to stipulate that no tube feeding be administered when they are no longer able to eat or drink independently. Starvation and dehydration are thus legally enforceable, while euthanasia in the same circumstances is not even possible.

The former ‘self’

Some argue that the former “self” can never predict, in an advance directive, what the present incapacitated “self” would want. In other words, the “then-self”, they claim, differs from the “now-self”, and therefore the advance euthanasia directive should not be taken into account. This argument is used neither in relation to negative advance directives, nor to other (marital) contracts and testamentary provisions, which remain legally enforceable. The recent bill by Irina De Knop (Anders) addresses this point clearly. Ultimately, no one is obliged to draw up an advance directive, and no doctor is obliged to perform euthanasia.

What are our elected representatives waiting for? And please, stop the delaying tactics once and for all.