Title: Improving discussions about resuscitation for bereaved relatives in COVID-19.
Funder: Department of Health and Social Care

Abstract: Research question Communication around the end-of-life has far-reaching effects on bereaved relatives/carers. This research explores how hospital Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) discussions can be improved by investigating the experiences of bereaved relatives/carers of older people who died in hospital of COVID-19. Background Research shows conversations around DNACPR decisions are best made in advance of acute hospital admission with a healthcare professional (HCP) trusted by, and known to, the patient (Hall et al., 2019). However, COVID-19 presents multiple challenges to this, including rapid, untimely clinical deterioration caused by the infection and social restriction measures, which limit face-to-face visits and consultations with relatives (Selman et al., 2020; Hewitt et al., 2020). Where a patient lacks capacity, HCPs are legally required to discuss DNACPR decisions with those close to the patient. DNACPR discussions with relatives/carers of patients in hospital are especially important in the context of COVID-19. In the UK the majority of COVID-19 deaths occur in hospitals and NICE guidance asks clinicians to consider DNACPR decisions for older frailer patients on admission (NICE, 2020; Kings Fund, 2020). Although the presence of DNACPR orders can be associated with improved bereavement adjustment in relatives/carers, complaints about DNACPR discussions in UK hospitals are common (Garrido and Prigerson, 2014; Schulz et al., 2015). Several high-profile cases draw attention to problematic approaches to this during COVID-19, including blanket DNACPRs for older people (Iacobucci 2020). This highlights the need for clear guidance around DNAR discussions in this new context. Best&ndash;practice should be informed by the experiences of bereaved relatives/carers. Aims and objectives We aim to explore the DNACPR discussion experiences of bereaved relatives/carers of people who died in hospital of COVID-19, in order to understand how this can be improved. Methods The next of kin of individuals with COVID-19 as a contributory cause of death and a documented DNACPR in place at time of death in hospital will be invited to take part in semi-structured telephone interviews. This qualitative study will be conducted over two NHS Foundation Trusts: Salford Royal and Northumbria Healthcare. The principles of data saturation will inform the sample size, but the team expect to conduct 45-60 interviews. Framework Analysis, ideal for policy-facing research, will be used to identify key findings (Gale et al., 2003). Anticipated impact, dissemination and timelines The team will undertake targeted dissemination of emerging findings, including 10 minute COVID-19 webinars and existing monthly DHSC/PRU meetings from June 2021 until February 2022. We will also present findings to the National Clinical Director for End-of-Life and the National End-of-Life Care Intelligence Network. We will deliver three main outputs: A formal report and briefing of findings for policy makers, following a 1/3/25 page format (February 2022); an article in peer-reviewed journal (submitted before April 2022); and public-facing report developed for bereaved relatives/carers (February 2022).

Lay abstract: Research aims This research aims to find out how discussions about resuscitation can be improved for the bereaved relatives/carers of people who died in hospital of COVID-19. The project will use relatives /carers experiences to inform policy makers and health care providers about what works well and what needs to be improved when discussing end-of-life issues in COVID-19. Research background Good communication around care at the end-of-life is important for relatives and carers, and can help when coping with bereavement. Most COVID-19 deaths occur in hospital &ndash; around 33,000 in the UK between March and August 2020. The issue of communication regarding resuscitation for those admitted to hospital is especially important during the pandemic. COVID-19 has disrupted usual modes of communication, due to untimely unexpected deaths and restrictions to face-to-face hospital visiting. Complaints about resuscitation communication are common. This is distressing for patients and families and costly for the NHS. Research is needed to explore how discussions about resuscitation have been undertaken during COVID-19. By listening to relatives and carers perspectives of what went well and what did not go well, lessons can be learned. Research design and methods We will undertake 45-60 telephone interviews to explore the experiences of relatives/carers of people who died in hospital of COVID-19 with a DNACPR order in place. This will allow the research team to ask specific questions we know, based on previous research, are important. This includes when and where discussions about resuscitation took place, and who led those discussions. We are in the process of applying for NHS ethical approval. The interviews will provide the participant with time to discuss other factors important to them, however the conversations may cause distress. We will offer bereavement support for participants after interview. The interviews will be recorded and transcribed. We will use a research technique called 'Framework Analysis' to analyse the data in a way that is useful for policy makers. Patient and public involvement The resuscitation discussion experiences of recently bereaved relatives/carers in the context of COVID-19 inspired this research question. Relatives/carers have been involved in the development of the research design. We will commission an advisory group of bereaved relatives/carers and bereavement specialists to help develop the interview questions, analytical framework and how we share our findings. Dissemination The research team are based at the NIHR Older People & Frailty Policy Research Unit and have regular meetings with the Department of Health and Social Care. We will deliver a formal report of the findings for policy makers. In addition, we will publish an article in a peer-reviewed academic journal and a public-facing report developed for bereaved relatives/carers.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: INFECTION