Feeding decisions in advanced dementia

Abstract

When close to death, people stop eating. In neurodegenerative conditions swallowing may become unsafe, and artificial nutrition and hydration (ANH) may be proposed or requested. But nutrition is surrounded by other considerations: opportunity, help, environment, enjoyment, mood, social being and symbolic importance. Poor care or deliberate attempts to end life might also result in poor nutrition and dehydration. Decisions about ANH are open to conventional ethical analysis and subject to mental capacity law. Most people with appetite or swallowing failure have advanced dementia and lack capacity. Determining someone's best interests means considering values and preferences, previous and current wishes, and requires consultation with families and other carers. Short-term prognosis is difficult to judge in non-malignant conditions. We often do not know the views of the individual. Moreover, we are unsure if ANH can achieve the goals intended of it - there is little evidence that tube feeding prolongs life, prevents aspiration or improves wellbeing. Palliative care and best practice dementia care have much in common. Open communication, good relationships with families and carers, skilled approaches to problems and respect for individuals and their diversity. Modified oral feeding will be appropriate for most; ANH is rarely appropriate, but some individuals and their families feel differently. Careful assessment for potentially treatable causes of swallowing and appetite problems, honest communication about uncertainties over prognosis and the impact of interventions and ascertainment of individuals' values and beliefs make for better care for people with dementia and better decisions about feeding.

Keywords: dementia; end of life care; ethics; feeding; gastrostomy; nutrition; tube-feeding.