A shared decision‐making model about care for people with severe dementia: A qualitative study based on nutrition and hydration decisions in acute hospitals

Abstract

Objectives

To understand the decision‐making processes regarding eating and drinking for hospital patients with severe dementia and use this data to modify a decision‐making model about care for people with severe dementia.

Methods

From January to May 2021, qualitative semi‐structured interviews were conducted with 29 family carers and hospital staff in England who cared for people with severe dementia during hospital admissions. Interviews were transcribed verbatim and analysed using codebook thematic analysis.

Results

We demonstrated a modified decision‐making model consisting of six stages of the decision‐making process: (i) identify a decision to be made; (ii) exchange information and recognise emotions; (iii) clarify values and preferences of all involved; (iv) consider feasibility of each choice; (v) share preferred choice and make a final decision; and (vi) deliver the decision, monitor outcomes and renegotiation. From this study, decision‐making needed to be shared among all people involved and address holistic needs and personal values of people with dementia and family carers. However, hospital staff often made assumptions about the persons' ability to eat and drink without adequate consultation with family carers. The process was impacted by ward culture, professional practice, and legal framework, which might overlook cultural and personal beliefs of the persons and families. Treatment escalation plans could help inform stepwise treatments, create realistic expectations, and guide future decisions.

Conclusions

Our decision‐making model provides clear stages of decision‐making processes and can be used to guide clinical practice and policy around care decisions for eating and drinking, which is often poorly supported.

Key points

• Most family carers and hospital staff use best‐interest decision‐making, considering the person with dementia's life history, previous wishes and preferences, current behaviours, and overall health conditions.

• Without adequate discussion with family carers, some staff spoon‐feed or give intravenous fluids to the person with severe dementia because they assume the person had lost their ability to eat by themselves, diminishing their autonomy and functions.

• In the shared decision‐making process, it is essential to empower the person, family members, and staff. It is important to elicit the person's cultural, professional, and personal values, using a clear and consistent protocol and well‐established trust.

• Treatment escalation plans could ensure everyone has a shared understanding of care and treatment.