Birt, Linda

Faull, Christina

Harrad-Hyde, Fawn

Ambulance Research Repository

Can we empower families of care home residents to discuss potential deteriorations and end-of-life?Dr Fawn Harrad-Hyde1, Dr Linda Birt1, Professor Christina Faull11. University of Leicester and LOROS Hospice, Leicester, UKBackground: Advance care planning is a potential way to reduce hospital transfers from care homes and has been highlighted in both research and national policy as a way of improving end-of-life care. Although it is important to include people in discussions and decisions about their care and treatment, approximately 70% of people living in care homes have some form of cognitive impairment. As a result, families are often involved in discussions and decisions as the person’s health deteriorates. Failure to have conversations prior to a deterioration taking place can lead to uncertainty and distressThis project aimed to explore potential ways to better support families of care home residents to think ahead and prepare for change as their relative’s health deteriorates. For more information please contact Dr Fawn Harrad-Hyde: fawn.harradhyde@leicester.ac.uk Findings:Prior to moving into a care home, families reported varying levels of discussion about how their relative’s health might change or deteriorate over time. Overall, only a minority of families had discussed what their relative would want to happen when their health deteriorated. When discussion had occurred, participants were much more likely to report they had focussed on post-death wishes, for example funeral arrangements, than wishes related to care and treatment towards the end of life.Once the person lived in the care home, some families reported having discussion about future deterioration with care home staff, yet the majority felt they had not had adequate opportunity to prepare for change. This was often reported even in instances that written plans (such as ReSPECT forms) had been completed. Families identified a number of topics they would have liked to have discussed in more detail (listed in Box 1).Staff and families acknowledged that conversations about potential deteriorations and about appropriate forms of care and treatment could be daunting and potentially distressing. However, they felt greater education about potential deteriorations and end of life care and greater confidence to discuss these topics (both amongst families and amongst staff) could help to empower families to be involved in such discussions.Conclusions:Our results highlight a need for better conversations about potential deteriorations and end of life care in care homes. Ongoing conversations may provide greater opportunities for families to consider how their relative’s health might progress, to ask and have their questions answered. Two potential ways to empower families in these conversations are:i) To provide educational sessions to families ii) To increase staff confidence in discussing potential deterioration and end of life, for example by developing training or opportunities to practice this skill.We are currently exploring ways to build this into existing education programmes and service provision at LOROS hospice. Methods:Data were collected and analysed concurrently in line with the constructivist approach to grounded theory. In total, 40 participants took part in a semi-structured interview. This included:• 14 family carers who, at the time of interview, were supporting a relative in a care home • 15 family carers who were bereaved and had previously supported a relative in a care home • 11 senior members of care home staffStakeholder engagement:In the study development phase, carers and practitioners were involved extensively. During data collection and analysis, the research team held regular meetings with two key stakeholder groups. The first group consisted of nine people with lived experience of supporting a family member in a care home. The group met quarterly, a total of five times, to discuss emerging findings and to provide feedback. The second group, met four times, and consisted of representatives of a range of health and social care and voluntary sector services which support family carers across the local region.Box 1: Questions about deterioration and end of life that families would have liked to have discussed:• How might dementia progress over time?• What does the natural dying process look like?• How can I tell if my relative is experiencing pain or discomfort?• Can my relative see and hear things when they appear unresponsive?• Should I try to assist my family member to eat and drinkk if they have been recognised as being at the end of life and they are no longer trying to eat and drink for themselves?

Can we empower families of care home residents to discuss potential deteriorations and end-of-life?

https://amber.openrepository.com/bitstream/20.500.12417/1641/1/107._Fawn_Harrad-Hyde.pdf

Can we empower families of care home residents to discuss potential deteriorations and end-of-life?

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