Lancaster University: UK COVID policies may have disproportionally impacted ethnic minorities at the end of life

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.

Professor Catherine Walshe, from the International Observatory on End of Life Care, Lancaster University, and co-author said:

“This important research has made it clear that one size really does not fit all when it comes to the provision of palliative and end of life care. Whilst those involved in providing care were working hard to be equitable in their approach, it is important to recognise that such approaches can impact in different ways and create inequity where none were intended”

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.

Key findings:

· 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.

Dr Sabrina Bajwah, Clinical Senior Lecturer at King’s College London, and lead author said:

“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 Jamilla Hussain, NIHR Clinical Lecturer at Wolfson Palliative Care Research Centre, Hull, and co-author said:

“There is a key lesson from this research, to provide good end of life care for marginalised groups we need to move away from business as usual which has engrained health inequalities – and many palliative care services did not do this during the first wave of the pandemic. There were examples of excellent services who pre-pandemic prioritised addressing inequalities for those from minority ethnic backgrounds, and these continued to find innovative ways to support these communities. Others who had not practically addressed inequality previously or simply did not consider it an issue for their service, continued to systematically disadvantage minority communities, even during a pandemic that disproportionally impacted such groups. There is much work to do, and increasing recognition and movement in palliative care services to address this by working closely with communities.”