Palliative care needs of minoritiesBMJ 2003; 327 doi: https://doi.org/10.1136/bmj.327.7408.176 (Published 24 July 2003) Cite this as: BMJ 2003;327:176
- A Rashid Gatrad (), consultant paediatrician,
- Erica Brown, head of research and development,
- Hardev Notta, Asian liaison officer,
- Aziz Sheikh, NHS/PPP national primary care post doctoral fellow
- Manor Hospital, Walsall WS2 9PS
- Acorns Children Hospice Trust, Birmingham B13 9EZ
- St George's Hospital Medical School, London SW17 0RE
Understanding their needs is the key
The opportunity to die with dignity is recognised by health professionals the world over as one of the most fundamental of all human rights. What is often forgotten is that notions of a good death vary considerably between cultures (and individuals within a culture), raising the risk of misunderstanding and cultural insensitivity.1 This need not be the case, as our experiences show. Even in ethnically and religiously diverse modern Britain, receiving high quality care at the end of life is possible and may, we hope, soon be probable for all.2 3 Realising this aspiration will need fundamental changes on at least three fronts: tackling institutional discrimination in the provision of palliative care, progress in incorporating transcultural medicine into medical and nursing curriculums, and a greater willingness on the part of healthcare providers to embrace complexity and in so doing develop a richer appreciation of the challenges facing people from minority communities in achieving a good end.4
The introduction of palliative care into health care is a relatively recent phenomenon, and even now these services are mainly focused on the needs of elderly people dying from cancer. However, migrant communities in Britain are typically younger and have proportionately higher death rates from diseases not related to cancer.5 Other factors may contribute to the difficulties in accessing appropriate terminal care. These include the belief among some that hospices, with their Christian roots, cater only for white Christian communities and that hospitals have “unreasonable” restrictions on visiting times and numbers of visitors for dying patients.6
No effective national provisions are in place for training of healthcare professionals in transcultural medicine, and few professionals will therefore have had any real opportunity to learn about death rites in different cultures. Why is it that a middle aged Muslim daughter insists on maintaining a day and night hospital vigil of her dying mother?7 Or why is it that Hindu parents wish their terminally ill child to die as close to the floor as possible?8 The importance of these and other rites of passage need to be understood by caregivers.
How do we move forward? The continuing evolution of palliative care services is crucial to ensuring that minority communities have access to high quality terminal care. Important developments have taken place in community palliative care, with the widespread introduction of Macmillan nurses and children's hospices. Priorities must now include services that embrace people with a much broader range of terminal conditions; these include end stage renal and cardiac failure, which are important causes of death within ethnic communities.
We need proactive strategies to recruit staff from a diversity of backgrounds.11 Our experiences show that multifaith hospital “chaplains” and ethnic outreach workers represent a particularly valuable resource in helping overcome language barriers, develop services, and promote partnership with local communities.
Health professionals are increasingly encouraged to focus on the idea of a good death. However, definitions have tended to emphasise physical and psychological support rather than religious perspectives. These often include control of symptoms and help with resolving unfinished business. Training in issues to do with faith—a subject so important to so many people during their last days—need to be incorporated into professional training. An estimated 65 medical schools in the United States now offer modules on spirituality and health, and these examples of good practice need to be emulated in Britain.12
But even the best training cannot cover all aspects of care nor deal with the myriad of ways in which values and norms interact and adapt before finally being enacted in the hospital, surgery, or home. We have, however, a relatively untapped potential for penetrating insights into how to shape the future agenda for the provision of palliative care: the doctors, nurses, and allied health professionals who, with their broad range of ethnic, religious, and cultural backgrounds, represent a most valuable learning resource. Understanding each other's narratives of what constitutes a good death offers us the possibility of improving the quality of care we deliver. The added benefit is that this helps us as individuals make better sense of questions we will encounter at some stage in our lives: How do I want to die?
Competing interests AS chairs the research and documentation committee of the Muslim Council of Britain.