One of the most difficult transitions is between the role of caregiver who assists and the role of caregiver who must make vital decisions in place of someone who is no longer able to do so on their own. In this article I share some of what I learned through this process, and some resources I found very helpful.
In a nutshell, my role as a caregiver over a period of 8 years with my father required me to make many adjustments. I had to learn to gradually move from the role of caregiver who advises, supports or implements, to the role of caregiver who decides for my father. It was refreshing for me to understand that at this stage of the relationship between the person being cared for and the carer, the decisions that have to be made are of a substitutionary nature. In other words, the caregiver makes the decision that he or she knows the person being cared for would have made if he or she were still able to do so.
As part of this decision-making process for my father, I found it liberating to realize that refusing treatment that had become inappropriate for a person’s health situation had nothing to do with causing death. Indeed, the extreme power of modern biomedical technologies can sometimes lead to cruel life prolongation and ill-founded moral dilemmas. However, if a person’s medical condition is irreversible, it is preferable to let them go. Indeed, under an innocuous appearance, certain treatments that might appear to be basic can turn out to be a subtle form of therapeutic relentlessness.
While the sanctity of life is a core value for my father and I, we also hold to the view that the Christian faith we confess allows us to determine when we no longer wish to resort to biomedical technologies so sophisticated that they have the power to keep us alive even if the conditions we suffer from are irreversible, such as old age with major degenerative disorders.
This article was enriched by an interview with trauma surgeon Dr. Kathryn Butler : A Godly Perspective on End-of-Life Decisions (Part 1 of 2) ; et A Godly Perspective on End-of-Life Decisions (Part 2 of 2). You may want to view it.
For full treatment, please consult the original French version, under the title: Apprendre à décider pour un proche qui en perd peu à peu la capacité.