Lidelse, agens og leveværd i begyndelsen og slutningen af livet

‘Do no harm’ is the first principle in both research ethics and bioethics, conveying an inherent ambiguity in the biomedical imperative to create healthier and longer human lives. As such, both medical intervention and research have always straddled the delicate border between care and violence, exposing how doing good can be easily transformed into or confused with doing harm. This border between care and violence appears even more delicate for people made vulnerable to harm by their proximity to the margins – the beginnings or end-stages – of life. So, how do people who care for people living at the margins experience the tension between care and violence?

To answer this question, in this essay we explore the moral perils of professionals who care for premature infants hovering between life and death, and people with dementia in the last stages of their disease.