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End of Life Care in Ethnic Minorities
BMJ
February 25, 2009
A clear measure of the quality of a society—as Gandhi is claimed to have said—is the way it treats people approaching the end of their life. In today’s society there is evidence that members of ethnic minority groups and minority faiths are rarely afforded the comfort of specialised palliative care.1 This is particularly ironic because one of the most famous images of hospice work is that of the Albanian nun and Indian citizen, Mother Theresa, at work in the slums of Calcutta.
Health professionals who refer patients to palliative care often think that hospices are Christian places where Muslims, Sikhs, and Hindus would not feel at home and that palliative carers are not "culturally competent."2 This is a misperception because most palliative care staff are keen and able to meet the needs of everyone in our multicultural society. Nevertheless, problems remain, and education or support is needed for both service providers and communities.
In the linked qualitative study (doi:10.1136/bmj.b183), Worth and colleagues explore the experiences, in terms of access to care, of South Asian Sikh and Muslim patients with life limiting illness, and the experience of their families.3 Their study includes a thorough literature review, longitudinal tracking, and sensitive qualitative interviewing of more than 40 patients and carers. The results of the study provide strong evidence that existing practice needs to improve.2 In particular, potential users of palliative services from minority groups need to be made aware of what is available, and primary service providers (or "gatekeepers" who make referrals) should be more prepared to offer these services and overcome their fear of dealing with patients from different backgrounds. Finally, it may be possible to make the end of life easier for people from migrant or diasporic families by measures such as improving international communication links.
Importantly, the authors found "exceptional willingness by staff to learn about and meet needs," which arose from a powerful philosophy of individualised care. This is in contrast to the common refrain that "we treat everyone the same"—a defence offered by people who deny that they are racist, yet who resist change in their practice which is needed to meet the demands of our multicultural society. As Bob Like, director of the Center for Healthy Families and Cultural Diversity in New Jersey said, "we should treat every case as a transcultural encounter—even with people of our own cultural background."3
The problem is that the philosophy of individualised care emphasises patient autonomy and one to one care, which as practised in Western medicine can cause ethical tensions when dealing with patients in the context of their family. In many minority groups, values related to the community and extended family may mean that family members try to conceal the patient’s terminally ill status or resist offers of care in case receipt is seen as shameful or a failure of duty.4 These tensions are present in non-minority groups also, as Like suggests, but are magnified during cross cultural interactions when a language interpreter (who is often a family member and not an independent go between) may be needed. As an earlier study in Birmingham found, "It’s not like speaking the same language as the patient—the thoughts, the feelings, the fears, all of that gets lost in the interpretation."5
The study also found that the main barrier to accessing palliative care was fear among professionals of doing the wrong thing, causing offence, or appearing discriminatory or racist. The lesson was that healthcare professionals should be prepared to make mistakes in an open and accepting manner, and to learn from patients and carers.5 Only then can the fear barrier and the real difficulties experienced by practitioners in transcultural consultations be overcome.6 Equally, the CAPACITY community advocacy project (to improve uptake of palliative care in Birmingham) and other projects concerned with improving access to services in minority communities have found that once services are explained and actively offered, people are willing to take up opportunities and to assist in the engagement and learning of care providers. This can enrich the lives of all who participate.
Medical and nursing education has moved from traditional learning through lectures to more active learning. This approach requires practitioners to be reflective and record when a patient presents with an unmet need, and to consider whether this presents an educational challenge that needs to be acted on.7 8
As Worth and colleagues have shown, these gaps in clinical education are strong barriers to the equitable provision of health care, especially for people from minority backgrounds. They also show that patients and their communities need information about what is on offer. If patients’ educational needs are not met through equal and fair access to services, then inequalities in health care will result. Those who fund such services should encourage them to invest in improving diversity and outreach to ensure that inequalities are
minimized.
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