Limits on quality of life: Who has the answer?

Abstract

Taking care of persons with intellectual and multiple disabilities (IMD), especially when vulnerability and medical intervention increase, can lead to the question: to what extent is there still quality of life? In the search for answers, caretakers and families are confronted with unsolvable dilemmas such as how can we identify the meaning of this life or recognise when there is suffering? How does one understand and give meaning to quality of life where fragility is present? Society, on the other hand, which rates successful living as the standard, avoids the discussion on limits to quality of life by labelling it as a medical ethical issue. It has recently been argued that the medical perspective is leading in this discussion and is the deciding factor in giving meaning to quality of life. Such statements worry IMD healthcare professionals and caregivers. This article therefore aims to offer an insight into the professional, practical and personal care experience of both authors, to explore the issue in more depth and start a nuanced dialogue without losing sight of the immense complexity of the subject. To do this, we first outline the social context in which the healthcare practice has to take place, explaining the reality of it and the difficulties faced.