Supporting family carers so that patients can be discharged from hospital at the end of their lives

A male end-of-life carer sits reading with his father.

Between November 2014 and January 2016, we worked with Marie Curie to see how we could adapt an evidence-based carer assessment tool to a hospital setting. As the project has now closed, we are able to share some of our general findings before final results are published later this year.

The Carer Support Needs Assessment Tool (CSNAT) helps family carers to think about the support they need to care for people at end-of-life, whilst also providing a medium for carers to  look after their own well being and helping them to have those conversations with a healthcare practitioner. This study explored how the CSNAT may be used to support carers during patient discharge home from hospital.

A male end-of-life carer sits reading with his father There is currently no formal way of supporting carers at hospital discharge, but our work has found that the CSNAT is seen as highly relevant and useful in filling this gap. It gives carers a voice, and helps them to identify what they need and what questions to ask. As well as allowing discussion of specific support needs, it may also help open important, wider conversations around end-of-life where desired.

To ensure that the CSNAT is as useful as possible, our work indicates that it should be introduced before the discharge process begins. The way it is introduced is important, so that carers are aware it is there to help them take the time to reflect on their needs and discuss them. Following on from this, there should be separate time and space for an assessment conversation with a practitioner, where consideration of carer needs is clearly separated from patient needs. This should be followed by shared action planning and follow-up.

Reassessment is important, particularly after the patient returns home. This may be helped by using a carer-held CSNAT record or by including CSNAT into discharge documentation so that community staff can see what has already been discussed and base a reassessment on this.

Gunn Grande, NIHR CLAHRC Greater Manchester End-of-Life Programme Lead and Professor of Palliative Care at The University of Manchester, says: “The study was able to gain rich, in-depth information from a substantial number of carers and practitioners through interviews and focus groups, and bring both carers and practitioners together in workshops to review findings and ways forward. The NHS is increasingly recognising the important role that carers play in providing care at end-of-life, and as part of this it is essential that carers own support needs are assessed”.

More information

For more information please contact Michael Spence, Programme Manager.