Euthanasia in advanced dementia: an empirical study of the decision-making process based on advance directives

In the Netherlands, euthanasia or physician-assisted suicide are criminal offences, yet physicians may be exempt from prosecution if they meet statutory due care criteria. This exemption also applies in situations where a written advance euthanasia directive (AED) is relied upon after decision-making capacity is lost. Although such cases are rare, it remains unclear how physicians, other healthcare professionals and relatives interpret and translate written wishes into ethically and legally defensible practice.

We conducted a qualitative case study of 14 real-life AED-based euthanasia cases-seven performed and seven forgone-using semi-structured interviews with 21 stakeholders (14 physicians, 10 other healthcare professionals, 5 relatives). Data were analysed with constant-comparison and framework analysis until saturation.

Five interrelated considerations guided each decision-making process: weighing the AED, assessing current wishes, the elusive nature of unbearable suffering, exploring alternatives and putting plans into action. Four contextual factors shaped judgement across cases: the physician-patient relationship, record-keeping, professional experience and seeking validation from others.

Decision-making on AED-based euthanasia is layered and uncertain, requiring physicians to weigh the patient's earlier written wishes against present expressions, observable suffering and input from others; when these elements cannot be brought together, participants deem euthanasia ethically unjustifiable.