Conversations and decision-making about nutrition and hydration for people with severe dementia in acute hospitals: a qualitative study.

Abstract

In acute hospitals, care for nutrition and hydration for people with severe dementia is often suboptimal and requires shared decision-making between family carers and hospital professionals. This study aims to gain an in-depth understanding of the shared decision-making process about nutrition and hydration from the perspectives and experiences of family cares and hospital professionals. Semi-structured interviews were conducted with 29 participants (12 family carers and 17 hospital professionals). Data were analysed using thematic analysis. We identified five themes: 1) getting the decision-making process started, 2) assessing the problems and exchanging information, 3) emotional- and value-sensitive conversations, 4) making the decisions, and 5) discharge planning and post-discharge support. Overall, eating and drinking decisions for an individual with severe dementia required person-centred care and a best-interests decision-making approach. Decision-making in acute hospitals was demanding and often poorly supported. Due to the busy environment and rapid staff rotation, hospital professionals might make assumptions about the individual's ability to eat and drink and adapt their eating and drinking without adequate consultations with family carers. Most hospital professionals wanted to gather information about the overall dementia progression before talking to family carers. This can be perceived as delaying by family carers. The decisions required a multidisciplinary team approach, which was not regularly used. Poor sharing of information meant family carers often felt confused and frustrated to repeat conversations with different professionals and needed to act as information coordinators in the acute hospitals. Different approaches across hospital wards and professionals made the decisions and conversations even more confusing. Most participants perceived artificial nutrition and hydration as not beneficial for the individual, but temporary uses of intravenous fluids and nasogastric tubes might be unavoidable for very specific situations. Decisions and conversations should cover post-discharge support and advance care plans to prevent readmission. Family carers and hospital professionals often found the conversations and decisions about eating and drinking difficult and insufficiently supported in acute hospitals. A multidisciplinary team approach, clear procedures and better information support may improve the decision-making processes to enhance the person-centred care and best-interests decision-making for the individual with severe dementia.