Living wills and therapeutic tenacity. The Belgian 1980s as a case study on paternalism and patient rights when dealing with the ambiguity of end-of-life decision making.

Activiteit: Talk or presentation at a workshop/seminar


As this workshop aims to find ways to reduce the intolerance of medical students confronted with ambiguous situations, this contribution offers a historical dimension to the understanding of concepts often at the heart of these issues, namely patient rights and end-of-life decisions. Central to our paper is the practice of living wills in the early 1980s. By then, the Belgian right to die movement had established living will databanks. These comprised of forms that members deposited annually. The organisations’ goals were to support the individual’s subjective determinations about the value of their own lives and their desire for its end to be hastened. As active euthanasia was punishable by law, submitters hoped that handing in the living will document annually, would
convince medical professionals of the informed and durable nature of their request for euthanasia. By 1984, the Association pour le Droit de Mourir dans la Dignité handed in the first proposal of law related to euthanasia. It centred around combating the then-novel notion of therapeutic tenacity (“acharnement thérapeutique”, the word existed only in French and was considered a neologism) by using living wills (“levenstestamenten”) in which a patient could express their wish for a ‘dignified end of life. The proposal of law failed, as would many of its
successors. Both the concept of living wills – originally American – and “acharnement thérapeutique” – are at the forefront of end-of-life debates between patients and medical professionals. The public support for euthanasia in Belgium was quite substantial by the 1980s, whereas medical professionals and a fortiori its –primarily catholic – institutions remained mostly opposed to any such practice. For those professionals willing to hasten the end-of-life of a patient at his or her request, living wills could be considered a tool to reduce insecurities in various ways. Firstly, the medical professional is assured of the patients’ position. Secondly, the penal code included an option to acquit the professional based on a “force majeure”. Lastly, living wills provided an opportunity for a patient to confront the paternalist tendencies of medical professionals as they had the
potential to open up a dialogue. Although Belgium has legalised some forms of, what is today called, advanced directives, they hold no legal weight in most countries. As such we are convinced that this historical case will help in making current medical students more receptive to ambiguous medical situations and consulting with patients on the implications of any medical decision.
Periode3 mrt 20224 mrt 2022
Evenementstitel“History of Medicine within the Medical Humanities: Exploratory workshop: Exploratory workshop funded by the Joint Committee for Nordic Research Councils for the Humanities and the Social Sciences (NOS-HS)
Mate van erkenningInternational