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.
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?
A Rashid Gatrad, consultant paediatrician
Manor Hospital, Walsall WS2 9PS (steadmana@walsallhospitals.nhs.uk)
Erica Brown, head of research and development, Hardev Notta, Asian
liaison officer
Acorns Children Hospice Trust, Birmingham B13 9EZ
Aziz Sheikh, NHS/PPP national primary care post doctoral fellow
St George's Hospital Medical School, London SW17 0RE
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Competing interests: AS chairs the research and documentation committee
of the Muslim Council of Britain.
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