Health democracy, ethics and the end of life: What are the challenges for shared decision making?

The end of life is a moment whose uniqueness and irreversibility make it more important than ever to respect the wishes of the person, in all her subjectivity and the full exercise of her freedom. Whether this end of life occurs because of an illness or old age, at home, in a medical or medico-social institution, the exercise of this individual freedom is faced with systemic constraints and very often with medical issues. For the past 50 years, the hyper-medicalization of life has exposed people at the end of their lives to a high probability of encounter with the health and social world. However, in health care as in any other field, the values and preferences of the person must be respected, by putting them in perspective with other issues; the latter are then subordinated to the former. The shared decision-making approach, as developed in health care, can also be applied to the end of life, where the triangulation between the person's wishes, societal determinants and the health care dimension is particularly acute. This is true whether one is suffering from an advanced illness, in a terminal and palliative situation or not, or simply in a situation of advanced age. Shared decision-making therefore has a singular dimension, in the medical encounter in the case of a terminal illness, but also a plural one, in the sense that it involves the person's entourage and habitus, and more broadly still, a political one, in the sense of the close link with the model of society that we are building. The challenges are as much ethical as they are social, political and health-related.