Supporting end of life decision-making in care homes

Research project: Scaling up the Family Carer Decision Support toolkit to support decision making at end of life

Lead Investigator: Professor Kevin Brazil

  • Institution: Queen’s University Belfast
  • Grant type: Implementation grant
  • Duration: 30 months
  • Amount: £291,164.35

Project summary 

When a person living with dementia is unable to make a decision for themselves, care home staff must deliver care that is in the person's best interests.

This can be complex and become a significant burden for both family carers and health and social care staff.  

This project aims to scale up the Family Carer Decision Support toolkit that is designed to help family carers to make decisions about end of life care options. 

The background 

Researchers recently reviewed the published literatures about families’ experiences of supporting a dying relative in care homes. They found family carers were often disappointed by the limited contact and lack of meaningful communication they had with care home staff. 

Families were are not always given an opportunity to discuss their relative’s illness, dementia journey and treatment. They often found it hard to make difficult decisions about end of life care and felt unprepared for their relative’s death. There is evidence that some care home staff are reluctant to discuss end of life care. 

However innovations such as the Family Carer Decision Support toolkit can help family carers to make informed decisions about their relatives care at end of life and help them to they feel satisfied with their loved ones care.  

What does this project involve?

The Family Carer Decision Support is made up of five key elements:

  1. Having a trained nurse facilitator
  2. Family education on comfort care at the end of life for people with dementia
  3. Family care conferences
  4. Having advanced care plan decisions
  5. Sharing the advanced care plans with GPs and nursing home staff. 

This project aims to scale up the use of the Family Carer Decision Support nationally by developing guidelines for care homes on how to use it. This includes developing educational materials for care home staff and family carers. 

The researchers will work with six care homes in Belfast, Lancashire, Cumbria Nottinghamshire and Leicestershire). They will identify the facilitators, barriers and resources needed to help care homes integrate the tool into routine care.

They’ll also be gathering more  information on the benefits of using the Family Carer Decision Support tool in care homes. 

How will this project help people with dementia?

Research has highlighted the importance of involving family members in decision-making for care at the end of life. Although researchers have produced the Family Carer Decision toolkit that is shown to improve care, it is not being widely used. 

The research team hope that by scaling up the use of the Family Carer Decision Support toolkit, we can reduce the uncertainty around making decision about end of life care for family carers.

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