Palliative care and taboos within motor neurone disease

Abstract

Taboos, whether held by professional carers, patients or families have the capacity to influence a whole range of choices that must be made during the course of any illness. In the case of motor neurone disease, decisions regarding if, when and how to break bad news, the place of care (home, hospital or hospice), the introduction of aids and devices, and, ultimately, choices regarding the place of death, will all be influenced by a range of taboos. If professional carers have major unresolved issues concerning their own mortality, it is unlikely that they will be able to truly stand alongside those who are facing their own imminent death. In discussing taboos, essentially what is of concern is attitudes. A basic change in attitudes is required if we are to stop viewing patients with incurable illness as some kind of medical failure.