Title: Thinking ahead about medical treatments in advanced illness: A qualitative study of barriers and enablers in end-of-life care planning with patients and families from Black, Asian and Minority Ethnic (BAME) backgrounds
Funder: Department of Health and Social Care

Abstract: Background NICE Quality Standards and Guidance require that Health Care Professionals (HCPs) engage in End-of-Life Care Planning (EOLCP) with all dying patients. Enabling choice and equitable access to palliative care are key strategies in government policy but people from Black Asian and Minority Ethnic (BAME) communities are disadvantaged because they access palliative services less and later than other patients. BAME patients are more likely to die in hospital and to receive more intensive treatments at the end of life. Thinking ahead about decisions related to anticipated deterioration may help people be cared for in the way, and in the place, that they prefer. However,little is known about how BAME patients access services and how current policy and practice 'fit' with diverse cultural values and beliefs. Additionally, our past and current work has shown that many HCPs lack confidence both in supporting BAME patients and their families and in engaging in EOLCP. Research question: What are the barriers and enablers to BAME patients, Family Care Givers (FCGs) and HCPs engaging in EOLCP? Methods Setting: East Midlands, UK. Patients, FCGs and HCPs will be recruited through primary and community care, specialist palliative care services and acute hospital services within Leicestershire and Nottinghamshire. Design: A 30 month qualitative study with three work streams. 1. Longitudinal patient-centred case studies with 20 patients, triangulating different data sources including baseline and follow up interviews over 3 months with patients, FCGs and HCPs and review of case notes. 2. Interviews with 20 bereaved BAME FCGs who have experienced the loss of a family member from advanced illness. 3. Stakeholder workshops in Nottingham and Leicester where fictionalized, real-life scenarios and EOLCP practices derived from the data will be presented and discussed. Analysis: Each data set will be subject to both separate and integrated analysis through the principle of constant comparison. Patient centred case studies will triangulate different stakeholder perspectives and data sources, including a review of clinical records. Analysis of case study data will include 1. holistic in depth analysis of each case to enable an understanding of how thinking ahead and EOLCP evolve over time and 2. a systematic cross case comparison using matrix charting. Dissemination and Outputs The research will provide new understanding of potential barriers and facilitators to EOLCP in BAME groups. The information will be integrated within local hospices and University teaching programmes and made widely available through the hospice website, community events, academic journals and conferences. The findings will inform an e-learning module with guidance notes, hosted by Health Education England e-Learning for Health End of Life Care for All (e-ELCA) which will be freely available to NHS and hospice providers. A preliminary evaluation will be undertaken of this resource. Developing understanding and skills in working with the uncertainty and complexity of sociocultural and religious diversity will facilitate patient-centred care for all patients and improve patient related outcomes at the end of life for those from BAME backgrounds.

Lay abstract: This study will look at how patients with serious illness from Black Asian and Minority Ethnic (BAME) backgrounds, family carers and the doctors and nurses who support them, think ahead about becoming very ill and dying. We want to: •Understand the different approaches people have to this and things that help or prevent conversations and future planning within the family and with doctors and nurses; •Identify how professionals can best support patients and what training is needed to do this. The UK government is committed to providing excellent end of life care for all patients regardless of their illness, where they live or cultural and ethnic background. However, research suggests that patients from BAME communities have less access to end of life care than other sections of the population and many doctors and nurses lack confidence in helping them with end of life care planning. We need to know more about the services that people from different BAME communities would like and how these might be developed to give the best support. We will aim to understand: •BAME patients and family carers’ experiences of serious illness and end of life care planning, •how their experiences compare with their actual needs and wishes, •how services can be developed to meet their needs and provide excellent end of life care. We will get to know a fairly small number of patients and family carers in great depth and over a period of time through detailed case studies. We will take the time to understand their thoughts about complex and sensitive issues and represent these as far as possible in their own words. We will also interview the doctors and nurses who support them. Our analysis will focus on understanding the experience and different perspectives of participants, as well as comparing the patterns of similarity and difference between them. Information will be collected by: 1.Creating 20 detailed case studies. Patients, their family carers and the doctors and nurses supporting them, will be interviewed up to 3 times over 3 months to understand how they think and talk about planning future care and making treatment decisions for patients approaching the end of life. Patients will take part only for as long as they are comfortable and happy to keep going. With permission, we will review patients’ medical records for information about their conversations with doctors and nurses and decisions about care. 2.Interviewing 20 bereaved family carers about their views and experiences of talking with relatives or friends about becoming very ill and dying and of end of life care planning, the problems they experienced and how these might be reduced and care improved. 3.Bringing together stakeholders including patients, family carers, faith leaders, professionals, managers, local NHS decision-makers, and teachers to workshops to look at the findings from our interviews and to share views on how they can be used to make care better for the patients and families. Findings will be shared with professionals and with the public via journals and at conferences and community events. They will also be posted on a study website. Those involved in training health and social care professionals will be informed about what people have said and how this could be used to improve care, through including the study findings in local hospices and University teaching programmes. We will also develop free online learning resources for health and social care professionals.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: GENERIC HEALTH RELEVANCE