New research has found UK wide COVID-19 policies may have disproportionately impacted people from ethnic minority groups at the end of life. In addition, the UK palliative care response may have been equal but inequitable. This is according to a new study led by King’s College London.
Published in BMJ Supportive & Palliative Care, the research aimed to develop insights into the response of palliative care services caring for people from ethnic minority groups during COVID-19 and gathered information from 277 UK palliative care services through an online survey.
Specialist palliative care services response to ethnic minority groups with COVID-19: equal but inequitable - an observational study (CovPall) is part of the CovPall study, a collaborative project between Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation at King’s College London, the International Observatory on End of Life Care at Lancaster University, the Wolfson Palliative care Research Centre in Hull York Medical School at the University of Hull and the University of York.
COVID-19 has disproportionately affected ethnic minority groups and these latest findings suggest “one size fits all” policies introduced during the COVID-19 pandemic may have adversely impacted these groups disproportionately, causing distress that services struggled to manage.
- Visiting restrictions may have had a disproportionate adverse impact in those ethnic minority groups that would traditionally have large numbers of family members involved in providing care, support and/or decision making, and where it was important for the wider community to visit and support in times of illness.
- Visiting restrictions may have not only removed patients’ psychosocial support and advocates, but also their personal and professional translators; for many, their only means of communication.
- COVID-related policies prohibiting physical contact with loved ones after death, may have particularly 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.
COVID-19 patients and families from ethnic minority groups were “underserved” at the end of life:
- Only 34% (93/277) of services cared for COVID-19 patients or families from ethnic minority groups.
- Services supporting those from ethnic minority groups were more likely to include hospital and less likely to include hospice or home care teams.
- 66% (61/93) of these services reported no difference in how they supported or reached these groups during the pandemic suggesting a focus on equal rather than equitable care delivery.
The research highlights that during the COVID-19 period, systemic steps, including equality impact assessments, are urgently needed to address inequity at the end of life for these patients and families. Formal safeguards and mitigation against the negative impact of emergency policies on these groups, beyond a sole focus on individualised care, is urgently needed.
We have known for a long time that those from ethnic minority groups are less likely to have a good death and are less likely to receive palliative and hospice care. This important research highlights the disproportionate distress caused by UK wide policies to these already vulnerable groups at the end of life during the COVID-19 pandemic. Whilst 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, we now need to urgently assess the impact of these and future policies on patients and families from ethnic minority groups. Formal safeguards and mitigation against the negative impact of these policies on these groups, beyond a sole focus on individualised care, is urgently needed. We provide clear recommendations for all underserved groups which are relevant for all healthcare specialities and settings dedicated to reducing health inequality.– Dr Sabrina Bajwah, Clinical Senior Lecturer at King’s College London, and lead author