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.
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.”
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”
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.”
Read the full paper: Specialist palliative care services response to ethnic minority groups with COVID-19: equal but inequitable – an observational study (CovPall) DOI: 10.1136/bmjspcare-2021-003083 in BMJ Supportive & Palliative Care.
About King’s College London
King’s College London is one of the top 10 UK universities in the world (QS World University Rankings, 2021) and among the oldest in England. King’s has more than 29,000 students (including more than 12,800 postgraduates) from some 150 countries worldwide, and some 8,500 staff.
King’s has an outstanding reputation for world-class teaching and cutting-edge research. In the 2014 Research Excellence Framework (REF), eighty-four per cent of research at King’s was deemed ‘world-leading’ or ‘internationally excellent’ (3* and 4*).
King’s Strategic Vision looks forward to our 200th anniversary in 2029 and sets out our ambitious plans in five key areas: educate to inspire and improve; research to inform and innovate; serve to shape and transform; a civic university at the heart of London; an international community that serves the world.
More information: https://www.kcl.ac.uk/about
The Cicely Saunders Institute is the world’s first purpose-built Institute for Palliative Care and Rehabilitation, named after Dame Cicely Saunders (1918–2005), recognised internationally as the founder of the modern hospice movement 50 years ago. The Institute is a partnership of Cicely Saunders International, King’s College London and associated local clinical services to bring together clinical and academic teams to innovate, discover, evaluate, and translate solutions
About Lancaster University
Lancaster University is a research intensive university ranked in the UK’s top ten. Around 16,000 students from more than 100 countries choose to study at Lancaster because of our excellent reputation for research, teaching and student satisfaction. Lancaster is a truly global community with international collaborations all over the world and teaching partnerships in China, Malaysia, Ghana and Germany.
About Hull York Medical School
Hull York Medical School is a partnership between the University of Hull and the University of York. Since opening in 2003, the School has become known as one of the UK’s most welcoming and inclusive medical schools with a reputation for innovative, inspiring and rigorous medical education. Students graduate from Hull York Medical School as excellent thinkers, evidence-based practitioners and patient-centred communicators, who are thoroughly prepared for clinical practice.
Hull York Medical School researchers conduct world-class, interdisciplinary research, addressing issues that are of critical national and international importance, including primary care, mental health, palliative care, public health, and immunology and infection. Research undertaken to date has attracted significant grants and funding, including from Marie Curie, the Wolfson Foundation, Cancer Research UK, and the British Heart Foundation. The School strives for excellence in research, with 85% considered world-leading or internationally excellent (REF 2014).
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