The disproportionate impact of COVID-19 (ie, increased likelihood of infection and death) on those from ethnic minorities is well documented.1 Suggested reasons include existing health inequalities, housing conditions (including multigenerational factors), public-facing occupations and structural racism.2 3

Prior to the pandemic, UK4–6 and international7 8 evidence has demonstrated inequity in the delivery and provision of palliative care (eg, access to services, place of care/death, late referrals) for those from ethnic minority groups. Within the UK, the term ‘ethnic minorities’ is used to refer to all ethnic groups except the White British group. Ethnic minorities include White minorities, such as Gypsy, Roma and Irish Traveller groups.9 While there is limited evidence from a single UK centre suggesting that patients from ethnic minorities may have had later referral to palliative care during the pandemic,10 we do not know more widely how palliative care services responded to the needs of these patients and families. There is also an absence of evidence of challenges services experienced in caring for patients and their families from ethnic minority groups and how they have adapted their services to meet these challenges. By 2040, demand for palliative care is projected to significantly increase in the UK,11 and the prevalence of those from ethnic minority groups is expected to rise from 12.7% in 2011 to 30.3% in 2051.12 It is important that palliative care services learn from the pandemic to shape practice and policy in equitable ways that meets the needs of all.

This study aims to map and develop insights into the response of specialist palliative care services caring for patients and families from ethnic minority groups during the first wave of the COVID-19 pandemic.

CovPall is a multicentre observational study of palliative care during the COVID-19 pandemic.13 We report data from the UK nations (England, Wales, Scotland and Northern Ireland) only from an online, cross-sectional survey of clinical leads of palliative care and hospice services. International data were excluded as there was limited knowledge of local context, constraining interpretation.

Services providing hospice and specialist palliative care across inpatient palliative care, hospital palliative care, home palliative care and home nursing settings were eligible for participation and were recruited through palliative care and hospice organisations (Sue Ryder, Hospice UK, Marie Curie, European Association of Palliative Care, Together for Short Lives, and the palliativedrugs.com and www.pos-pal.org network) between April and July 2020. Within these sites, service leads (medical or nurse directors/clinicians) or their selected nominees were eligible to complete the survey. The CovPall protocol is registered (ISRCTN16561225) and these survey results are reporting according to Strengthening the Reporting of Observational Studies in Epidemiology14 and Checklist for Reporting Results of Internet E-Surveys 15 checklists.

This survey was developed through iterations within the CovPall team and piloted in expert and patient public involvement consultations. Research Electronic Data Capture16 was used to securely build and host the survey which aimed to understand how specialist palliative care and hospice services responded to the COVID-19 pandemic. The survey comprised 72 closed text and 94 free text responses and is reported in full in the main study paper.13

This paper focuses on UK services who answered survey questions about care of those from ethnic minority groups. For the quantitative data items, we analysed the following variables by whether or not they encountered patients or families with COVID-19 from ethnic minority groups: UK regions, setting (inpatient hospice palliative care team, hospital palliative care team, home palliative care team, home nursing team), management type (public, charitable, private/other), type of patient (adult, children or both), presence of suspected or confirmed COVID-19, number of confirmed or suspected COVID-19 cases per service and disease severity. From the free text comments, we analysed one closed-ended and two open-ended questions (see table 1). The responses provided were responses made by service leads (or their nominees) on behalf of the service in which they worked.

Questions from CovPall survey focusing on patients and families from ethnic minority groups

Anonymised quantitative data items were summarised descriptively. Continuous variables were expressed as means (SD), or medians (IQR) if the assumption of normality was not met. Categorical variables were expressed as counts and percentages; χ2 tests were used to explore relationships between categorical variables with a p value of 0.05 as the cut-off to determine significance level. SPSS (V.26) was used for statistical analysis.

The analysis of the free text data was informed by guidance specifically developed for postal or online questionnaires.17 18 We used reflexive thematic analysis19 as a method to guide analysis in which two researchers (JK and JH) independently familiarised themselves with the data for each comment box by reading all the responses. Data for each question were initially analysed separately, before coming together. Data were analysed across all questions before the creation of themes. Notes were made of any potential codes from the data set by identifying recurring words or units of meaning. During the analysis, the researchers employed an abductive approach in which induction and deduction were combined.20 That is, coding and theme development were initially driven by the content of the comments in the data and required a continual bending back on oneself, questioning and querying the assumptions made in interpreting and coding the data. Central to this was reflective and critical engagement with the data and analytical process more generally. During this process, codes were amalgamated, or new codes were created as differences in meaning were identified. A third researcher (SB) reviewed the first and second-order coding decisions. Any discrepancies or disagreements were discussed between SB, JK and JH and, where necessary, adjustments made to achieve consensus. These data were then subsequently discussed with the wider study group who have various backgrounds to prevent one-sided interpretation of the data. To preserve context, the anonymised comments have been presented in full. As per recent recommendations, we will be using the term ‘ethnic minority groups’ in our reporting rather than ‘black and minority groups’.21 This term is used to represent a heterogenous rather than homogenous group. Where data are available, we have referred to the individual ethnic group.

Specialist palliative care services have faced challenges in meeting the needs of those from ethnic minority groups during the COVID-19 pandemic. This study aimed to map and develop insights into the response of specialist palliative care services caring for patients and families from ethnic minority groups during the first wave of the COVID-19 pandemic.

Our findings suggest that while service providers may have perceived they were treating all patients and families equally through individualised care, policies around visiting and after death care may have impacted ethnic minority groups more. This may have resulted in equal but inequitable care at the end of life for these groups. Equality means every individual or group of people is given the same resources or opportunities to achieve the same outcome.24 In contrast, inequity relates to unfairness or injustice; reflecting a sense that different resources might be needed to achieve similar outcomes.24 In delivering equitable healthcare, some patients and families from ethnic minority groups may require more resources. While we may have a perception that by treating everyone the same/equally we are doing good and being fair, this is not always the case. Treating all patients and families equally regardless of ethnicity is likely to lead to unequal outcomes and is therefore likely to be inequitable care. Another strong theme in our findings was that services had focused on delivering individualised care. While the individualised approach adopted in palliative care is important, focusing solely on individualised care may overlook systemic and organisational changes needed to ensure equitable delivery of care for those from ethnic minority groups.

Health inequality models that include the WHO Commission on Social Determinants of Health25 help us to understand that health inequalities exist at multiple complex interacting levels and are the result of many factors, including socioeconomic position, psychosocial and health system factors.25 Inequalities in health, healthcare access and quality of care are ingrained in healthcare systems. Many members of ethnic minority groups have lower socioeconomic status, have two or more coexisting conditions and reside in conditions that impede social distancing. A recent systematic review conducted prior to the pandemic highlighted persistent inequalities in hospice care provision for a number of groups, including those from ethnic minorities.6 Our data suggest that COVID-19 has not broken down these barriers, a number of which may be deeply entrenched within the specialty.26 Hospital teams were more likely to have cared for these patients and families. Only 23% of responding hospice inpatient and 30% of home palliative care teams had cared for dying patients with COVID-19 from ethnic minority groups. This is despite community and home care palliative care teams reporting that they have been being busier during the COVID-19 pandemic.13 There are no comparable pre-COVID-19 data. The reasons for these inequalities, and how they relate to the distribution of ethnic minority groups in the population, and their palliative care needs, are unknown.

Our data demonstrate that visiting restrictions may have removed patients’ psychosocial support and advocates, and their personal and professional translators for many, their only means of communication. The importance—among ethnic minority groups—of family visiting at the end of life has been highlighted previously.27 28 Also, the importance of interpreter use is recognised in providing high-quality clinical care for limited English-speaking patients.29 Verbal communication at the end of life is essential to meet basic care to assess a patient’s clinical needs, and to consider important questions around prognosis and address fears. During times of illness and stress, competent English speakers may revert to their first language. Managing complex discussions about illness, prognosis and future expectations is difficult, but these difficulties appear to have been further compounded by personal protective equipment hindering the use of telephone interpreting services for patients from ethnic minority groups. Similarly, policies introduced, prohibiting physical contact with loved ones after death, may have disproportionately impacted ethnic minority groups who are more likely to conduct compulsory after-death rituals such as prayer in large groups with touching and washing of the body. Services repeatedly stressed the challenges in managing the distress related to these policies. While services were focused on delivering individualised care, the overarching changes in policy may have resulted in inequitable care. Gaps in routine data, national surveys and research may have contributed to neglect in UK policy with inadequate evidence on how to meet the health needs of those from ethnic minority groups.

While individualised care, the pillar on which palliative care is built, ideally should result in equitable delivery of care for those from ethnic minority groups, our findings demonstrate this was not in all cases. This is because there are other important factors which come into play. Structural racism is present if processes and organisational structures facilitate delivery of healthcare in a way that impacts one ethnic group more than another.26 Specifically, within the responses, we found patterns suggesting structural racism (eg, organisations’ policies on restricted visiting despite the cultural and religious significance of this to some groups; policies that prevented compulsory after-death rituals; the disproportionate impact of visiting policies on communication for people from ethnic minority groups). Structural racism is present if organisations do not assess the impact of their policies and practices and mitigate or put safeguards in place when policies are found to adversely affect certain ethnic groups.30 Our data demonstrated no evidence of systematic assessment of the impact of these policies. Solutions to mitigate against increased distress experienced by those from ethnic minority groups were limited in both number and effectiveness.

For people from ethnic minority groups, the building blocks that should inform individualised care have been shown to be absent during clinical encounters that cannot be replayed. This includes the delivery of culturally congruent care. Our study suggests that there may have been instances where the palliative care response to COVID-19 may not have been universally culturally congruent. For example, there were instances where individuals completing the survey appeared to have preconceived cultural and religious reductionist views about certain ethnic groups.31 In addition, there was an expectation that the patient and family from the ethnic minority group needed to explain their needs and if communication did not go well, there appeared to be a deficit model directed at the patient and family. While participatory action from all parties (including patients and families) is required to deliver equitable healthcare, the duty should be on services to ensure that they are delivering culturally congruent care and to actively reach out to patients and families when they are highly vulnerable. In our survey, services reported that families were ‘closing the doors’ even when services reached out. What is not clear is whether this was occurring for the same reasons previously documented (lack of awareness, language barriers; cultural issues and culturally insensitive services)4 32 or whether this was specifically related to the pandemic (eg, fear of infection, mistrust of healthcare professionals/systems, fear of rationing). While previous literature has also noted inequitable care despite a focus on individualised care in other marginalised groups,33 our study is the first to note this in those from ethnic minority groups.

For care to be equitable, there need to be socially, culturally and religiously informed building blocks on which individualised care is built. Making sure these building blocks are in place will require a ‘centring at the margins’ approach— that is, a shift of viewpoint from the ‘served’ perspective to that of the ‘underserved’ group, in this case towards those from ethnic minority groups. There is an obligation to remove or minimise the disadvantage experienced by people due to their culture and ethnicity and take steps to meet the needs of these groups where these are different. As we move to a para-COVID-19 period, palliative care services need to urgently define, operationalise and accurately measure need in relation to use to draw conclusions about the presence or absence of inequities.

Importantly, all palliative care healthcare providers and services should consider how their attitudes, actions and delivery of care affect patients and families from ethnic minority groups and how they may disproportionately adversely impact and contribute to inequity of palliative care access, delivery and outcomes. In developing solutions, it is important that they are designed in concert with the population they are intended to serve. Moreover, they should be aimed at achieving long-term institutional culture change and avoid a deficit model where challenges and solutions to meet them are focused exclusively on the individual and their family. We examine the gap between equal and equitable care and provide recommendations in figure 1. While we have focused on ethnic minority groups, our recommendations are relevant for all ‘underserved’ groups.

The delivery of equal palliative care during the COVID-19 pandemic and recommendations for equitable care for the future.

This study is the first to examine across the four nations of the UK, how palliative care services are delivering care to patients and families from ethnic minority groups. Our data are the first to begin to understand the impact of ‘one size fits all’ policies on those from ethnic minority groups at the end of life and the first to examine the impact of urgent policies on marginalised and disproportionately adversely affected groups during the COVID-19 pandemic. Our survey was large (277 responses) with a high response rate (76% of UK hospice services responding). The research team comprised an ethnically diverse group and a patient and carer from ethnic minority backgrounds were involved in critical reflection of the findings.

Surveys were completed by clinical leads at the services/hospices. Therefore, the data reflect their perceptions. We did not engage directly with patients or families from ethnic minority groups. There may have been ambiguity in the questions asked which led to different interpretations and therefore responses may not reflect actual clinical practice or views. Some of the responses lacked detail and there was a lack of responses from some areas with high proportions of ethnic minority groups (eg, the Midlands) and it was not clear what proportion of patients seen were from an ethnic minority group for those responding. The survey was conducted early in the pandemic and some services may not have had many patients with COVID-19 at time of completion. Responses may have been subject to social desirability bias. We do not know whether services who did not respond had different experiences, with more or fewer challenges. While free text comments are a useful source of information,34 they may not represent all respondents.

Within the UK, all public authorities and organisations have a legal duty to consider how their policies or decisions affect those from ethnic minority groups.35 An equality impact assessment is a legal requirement designed to help organisations ensure that their policies, practices and decision-making processes are fair and do not unfairly disadvantage protected groups.35 Where policies are found to unfairly disadvantage a protected group, safeguards and mitigation measures should be introduced.35 This may include flexibility in policies to take account of patients’ communication and religious needs and the introduction of videoconferencing via tablets to facilitate communication for family, professional translation services and religious support. While policies introduced rapidly during the first wave of the COVID-19 pandemic may have been justified by the legitimate aim of protecting the general public, all services now need to urgently assess the impact of these and future policies on patients and families from ethnic minority groups. This should include specifically targeting issues around language and distress caused by ‘one size fits all’ policies. Formal safeguards and mitigation against the negative impact of these policies on these groups, beyond a sole focus on individualised care, are urgently needed. While our work is focused on palliative care services, our recommendations are relevant and timely for all healthcare specialties and settings. While these data are UK based, recommendations would potentially be applicable internationally.