Authors' objectives: 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. 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? This study explored the experiences of terminally ill patients from ethnically diverse backgrounds and their family caregivers (FCGs), and whether or not, and how, they think ahead about deterioration and dying and the nature of their engagement with health-care professionals (HCPs) in end-of-life care planning (EOLCP). We have explored diversity in approaches to decision-making and the barriers to, and facilitators of, discussions and planning for future deterioration. The National Institute for Health and Care Excellence quality standards and national policy and guidance require that HCPs offer patients with advanced disease an opportunity to have open and honest conversations about their illness and its prognosis, and to engage in shared decision-making, including anticipatory EOLCP, thereby enable personalised care at the end of life and equitable access to palliative care services. Thinking ahead about decisions and preferences 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 the nature of ethnically diverse patients’ preferences for end-of-life care (EOLC) or how the current EOLCP policy, paradigm and practice ‘fit’ with diverse cultural values and beliefs. In addition, evidence indicates that many HCPs lack confidence both in engaging in EOLCP and in supporting ethnically diverse patients and their families generally, and lack training and development in this area. 1.To explore how terminally ill patients from ethnically diverse backgrounds, their FCGs and the HCPs who support them think ahead about deterioration and dying; to explore whether or not, and how, they engage in EOLCP; and to identify barriers to and enablers of this engagement. 2.To explore the experiences and reflections of bereaved family caregivers (BFCGs) on EOLC, and the role and value of thinking ahead and of engagement with HCPs in EOLCP. 3.To identify information and training needs to support best practices in EOLCP and to produce an e-learning module available free to NHS and hospice providers.

Authors' results and conclusions: 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. 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. Good EOLC is care aligned with patient preferences. Truly personalised care requires engagement with the differing values, beliefs and choices of individuals. The findings indicate that what constitutes a good end of life and a good death is influenced by the intersectionality of a number of complex factors, including, but by no means limited to, those of beliefs and culture. All people desire care that is personalised, compassionate and holistic, and the frameworks for good palliative care support this. However, HCPs need additional skills to navigate complex, sensitive communication and to enquire about spiritual values and aspects of people’s lives with which they may be unfamiliar. The challenge for HCPs and services is in the delivery of this holistic care framework and the additional range of skills that are required to do this. The nuanced, and changing, preferences for information, decision-making and care in the accounts and experiences of the participants indicate that only a focus on outcomes that relate to care being personalised, compassionate and holistic will address inequity. What constitutes a useful and safe discussion about the future may look and feel different when underpinned by specific paradigms about life, illness and death. Offering opportunities for information and discussion about a person’s illness and situation was valued by many, but not by all, of the participants, and the level and timing of that discussion, and who that discussion is held with, must be navigated with skill. Implications for practice End-of-life care planning and related documentation is seen in policy as the predominant vehicle for enabling good end of life, but this may be in tension with the preferences of patients. Systemic support needs to be more effectively attuned to the values and sociocultural contexts of patients and families, and provide continuity to deliver on personalised care. Health-care professionals require high-level skills to navigate complex, sensitive communication and interpersonal relationships that foster appropriate discussions and planning for anticipated deterioration. This could be fostered by an integrated team approach, which includes members with skills in language and cultural bridging or advocacy.

Authors' recommendations: 1.How can HCPs identify if/when a patient is ‘ready’ for anticipatory discussions of deterioration and dying? 2.How can discussions about uncertain recovery and the need for decisions about ceilings of care, especially resuscitation, be most effectively conducted in a crisis? 3.How can professionals recognise and respond to the diversity of faith and cultural practices and to the heterogeneity of beliefs and preferences relating to EOLC between individuals from different ethnic groups? 4.What are the implications of an understanding of collectivist and relational models of care and decision-making for current UK health policy and practice, and their focus on individual choice, autonomy and anticipatory planning? 5.How can conversations be most effectively conducted when translation is required to enhance patient understanding.

Authors' methods: 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. The study was set in Nottinghamshire and Leicestershire in the UK. It was attempted to include a broad ethnic diversity in the sample, but the authors acknowledge that not all groups could be included. This qualitative exploratory study recruited participants into three workstreams (WSs) between February 2019 and May 2021. •Workstream 1: longitudinal patient-centred case studies, triangulating different data sources, including baseline and follow-up interviews over 6–9 months with a patient, their FCG and a HCP nominated by the patient, and a review of clinical records. Patients in seven participant identification centres (general practices, acute hospitals, hospices, community services/self-referral) were first approached by a HCP who was known to them. •Workstream 2: a single interview with BFCGs who had experienced the loss of a family member from advanced illness in the previous 3–12 months. Participants were approached by a HCP known to them or contacted the research team themselves. •Workstream 3: public and professional stakeholder responses to the themes of WS1 and WS2 in facilitated virtual workshops or written workbooks. Participants for WS1 and WS2 and most participants for WS3 were intentionally recruited in Nottingham, Nottinghamshire, Leicester and Leicestershire. Additional academic stakeholder participants for WS3 were recruited nationally. Awareness about the study was promoted through a range of strategies including local Clinical Research Networks, e-mails, flyers, websites, Twitter (Twitter, Inc., San Francisco, CA, USA), an extensive programme of community engagement events and local radio. We purposively sampled participants to achieve heterogeneity in key attributes and to construct a matrix that may be important for attribution of themes/subthemes and in our search for examples of variance within the data. Recruitment was facilitated through translated materials and interviews were conducted in the preferred language of the participant. Most interviews were conducted in the patient’s or FCG’s home or the place of work for HCPs, but some were conducted by telephone, principally because of the COVID–19 restrictions.

Project Status: Completed

URL for project: https://www.journalslibrary.nihr.ac.uk/programmes/hsdr/17/05/30

Year Published: 2023

URL for published report: https://www.journalslibrary.nihr.ac.uk/hsdr/JVFW4781

URL for additional information: English

English language abstract: An English language summary is available

Publication Type: Full HTA

Country: England, United Kingdom

DOI: 10.3310/JVFW4781

Organisation Name: NIHR Health Services and Delivery Research programme

Contact Address: NIHR Journals Library, National Institute for Health and Care Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science Park, Southampton SO16 7NS, UK

Contact Name: journals.library@nihr.ac.uk

Contact Email: journals.library@nihr.ac.uk