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 ethnically diverse backgrounds

Abstract

Background This study explored whether or not, and how, terminally ill patients from ethnically diverse backgrounds and their family caregivers think ahead about deterioration and dying, and explored their engagement with health-care professionals in end-of-life care planning. Objective The aim was to address the question, what are the barriers to and enablers of ethnically diverse patients, family caregivers and health-care professionals engaging in end-of-life care planning? Design This was a qualitative study comprising 18 longitudinal patient-centred case studies, interviews with 19 bereaved family caregivers and 50 public and professional stakeholder responses to the findings. Setting The study was set in Nottinghamshire and Leicestershire in the UK. Results Key barriers – the predominant stance of patients was to live with hope, considering the future only in terms of practical matters (wills and funerals), rather than the business of dying. For some, planning ahead was counter to their faith. Health-care professionals seemed to feature little in people’s lives. Some participants indicated a lack of trust and experienced a disjointed system, devoid of due regard for them. However, religious and cultural mores were of great importance to many, and there were anxieties about how the system valued and enabled these. Family duty and community expectations were foregrounded in some accounts and concern about being in the (un)care of strangers was common. Key enablers – effective communication with trusted individuals, which enables patients to feel known and that their faith, family and community life are valued. Health-care professionals getting to ‘know’ the person is key. Stakeholder responses highlighted the need for development of Health-care professionals’ confidence, skills and training, Using stories based on the study findings was seen as an effective way to support this. A number of behavioural change techniques were also identified. Limitations It was attempted to include a broad ethnic diversity in the sample, but the authors acknowledge that not all groups could be included. Conclusions What constitutes good end-of-life care is influenced by the intersectionality of diverse factors, including beliefs and culture. All people desire personalised, compassionate and holistic end-of-life care, and the current frameworks for good palliative care support this. However, health-care professionals need additional skills to navigate complex, sensitive communication and enquire about aspects of people’s lives that may be unfamiliar. The challenge for health-care professionals and services is the delivery of holistic care and the range of skills that are required to do this. Future work Priorities for future research: How can health professionals identify if/when a patient is ‘ready’ for discussions about deterioration and dying? How can discussions about uncertain recovery and the need for decisions about treatment, especially resuscitation, be most effectively conducted in a crisis? How can professionals recognise and respond to the diversity of faith and cultural practices, and the heterogeneity between individuals of beliefs and preferences relating to the end of life? How can conversations be most effectively conducted when translation is required to enhance patient understanding? Funding This project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme and will be published in full in Health and Social Care Delivery Research; Vol. 11, No. X. See the NIHR Journals Library website for further project information.