There are many inequities and barriers that exist in palliative care and end of life care for minority ethnic groups such as reported poorer quality of care and access to pain management. But, it is unclear how these barriers and inequalities differ across minority ethnic groups in different countries, and across health conditions within these groups.
To better understand these inequities, Aker (2024) and colleagues conducted a scoping review to explore the research question: How do older people from minority ethnic groups access and utilise palliative and end of life care, and how does this vary between different ethnicities, countries, and health conditions? The specific objectives included:
- Understand the existing evidence base on palliative and end of life care for older people in the context of minority ethnic groups to identify gaps in research and understanding.
- Identify how older people of different minority ethnic groups access, engage with, and utilise specialist or generalist palliative and end of life care.
- Understand inequalities, barriers and facilitators in accessing palliative and end of life care experienced from perspectives of older people from minority ethnic groups receiving palliative or end of life care, informal carers and healthcare professionals.
- Compare how access to palliative and end of life care varies between different countries, minority ethnic groups, and health conditions.
Included articles described experiences of older people from minority ethnic groups in any country, who were receiving (or had received) generalist or specialist palliative or end of life care for any health condition. Additionally, articles about informal carers and healthcare professionals were included.
Twenty-three articles met the inclusion criteria and were included in the review. The data extracted during the full text review included: country of origin, participant details, area/aspect of palliative care being researched, and key findings relating to the research question.
The extracted data was analyzed and findings were grouped into seven overarching themes:
- Knowledge of hospice and palliative care – Understanding of palliative and end of life care was generally limited among Black and African-Caribbean carers, migrants, and culturally and linguistically diverse patients.
- Societal and structural issues – Hospice care and other end of life support held a stigma among Black African-Caribbean, African American, and Chinese American communities.
- Language and health literacy – Language barriers were frequently reported.
- Migratory experiences – Migrant patients in Germany experienced feelings of not belonging, which led to difficulties towards the end of life, such as experiencing less support from neighbours and the local community than in the country of origin.
- Trust in healthcare services and professionals – Trustworthy information was important and acted as a facilitator to accessing care, with recommendations from friends, neighbours, and spiritual leaders being the main influence on decision making.
- Religion and hope – Religion was seen as a facilitator in end of life decision making. Many Black, African-Caribbean and African American carers indicated that their faith, religious beliefs, or pastoral counselling was an important resource in making end-of-life care decisions for their family member.
- Cultural values – Caring for family members was an important cultural tradition in many studies. For Black, African-Caribbean and African American carers, it was reported as important to take care of their family members.
Barriers and facilitators for accessing and utilising care were explored through each theme. The review identified areas for healthcare providers to consider developing more culturally appropriate palliative and end of life care practice.
Source: Aker, N., Griffiths, S., Kupeli, N., Frost, R., Nair, P., Walters, K., … & Davies, N. (2024). Experiences and access of palliative and end of life care for older people from minority ethnic groups: a scoping review. BMC Palliative Care, 23(1), 228.
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