Best interest versus advance decisions to refuse treatment in advance care planning for neurodegenerative illness

This article describes the role of nurses assisting people with degenerative illness in advance care planning (ACP) for a time when they may lose decision-making capacity. It looks at the concept of advance decisions to refuse treatment (ADRT), as defined in the Mental Capacity Act 2005 , exploring the legal, ethical and philosophical ramifications of carrying out, or overriding, formerly expressed wishes of someone who has subsequently lost decision-making capacity. It uses an illustrative composite case study of an individual with Huntington's disease whose prognosis includes future deterioration in swallowing, together with consideration of whether to have or refuse a percutaneous endoscopic gastrostomy. The author, who as part of his role cares for people with neurodegenerative conditions, including Huntington's disease, discusses the difficulties and dilemmas that nurses experience with ADRTs, drawing on personal experience. He suggests that, rather than focusing on ADRTs, ACP may be most effective in preparing people and their surrogates to make real-time decisions, based on a shared understanding of the individual's values.