The Decline of Chronic Illness Towards the End of Life

Abstract

Self-determination is a central tenet of medical ethics today, and it is important in chronicity. Nowadays lots of diseases involve delicate decisions: which treatment to undertake and which to avoid; when, in the case of cancerous diseases, to stop and start on a phase without treatment; when to rely on pain relief and palliative care; and when to go into a hospice. These kinds of decisions are only possible when made consciously. This is not always a straightforward process. A single life involves many changes, even in those who have expressed an underlying attitude towards the end of their life, and their preferences for it. Yet when a disease appears, often unexpectedly, one’s feelings and view of life tend to change. Dementia is a chronic condition which does not allow you to choose beyond a certain point. Making a choice in the world of chronic illness assumes that one has all the information, which must lead to conscious choices. If this is not the case, things just happen. We find ourselves powerless in situations we would never have wanted, and we are denied things we would otherwise gladly have accepted. It is the difference between letting things happen and, as far as possible, giving shape to one’s life—including its end.

… so we live, and are always taking leave (… so leben wir und nehmen immer Abschied)

Rainer Maria Rilke

Duino Elegies