Memorandum by Mr Gurch Randhawa (PC 20)
A REVIEW OF PALLIATIVE CARE FOR MINORITY
ETHNIC GROUPS—A UK CASE STUDY
INTRODUCTION
According to the UK Government's recently published
NHS Cancer Plan, hospice and community palliative care services
are "among the best in the world" (DoH, 2000, 62). Furthermore,
the report outlines a commitment by the Government to an "unprecedented
increase" in funding (£50 million by 2004) to expand
palliative care service provision and to even out inequalities
in access (DoH, 2000, 68). A particular concern is that there
appears to be reduced access to, or take up of, palliative care
services within deprived areas and within parts of the country
where there are substantial minority ethnic group populations
(DoH 2000, 68).
PALLIATIVE CARE
AND MINORITY
ETHNIC GROUPS—A
REVIEW OF
THE LITERATURE
A number of health care professionals and academic
researchers in the UK have noted the seemingly low take up of
palliative care facilities among minority ethnic groups (Hill
and Penso, 1995, 8). A pioneering study by Rees (1986), based
on research carried out into the use of St Mary's Hospice in Birmingham,
concluded that utilisation by immigrant groups was four times
lower than that for British-born individuals.[12]
Similarly, a more recent study by Fountain (1999) focusing on
the town of Derby, has also concluded that "ethnic minority
patients use all palliative care services proportionally less
than white patients" (Fountain, 1999, 162). Whereas ethnic
minorities made up 9.7% of Derby's population they accounted for
only 1.5% of patients referred to palliative care services in
the town. Indeed, this picture has been reinforced by a considerable
number of case-studies of the provision of palliative care services
in the UK (see, inter alia, Clarke, et al (1991)
and O'Neill (1994)). In response to a widely held concern about
the extent to which the specialist palliative care services of
black and ethnic minority communities were being met, The Department
of Health and the Cancer Relief Macmillan Fund, financed a major
research project undertaken on behalf of the National Council
for Hospice and Specialist Palliative Care Services by Dawn Hill
and Dawn Penso (Hill and Penso 1995). This study specifically
set out to try and understand why palliative care services were
seemingly under-used by minority ethnic groups and to propose
changes to working practices and modes of service provision that
would improve the uptake of care. However, a key finding of this
report was that there was very little systematic evidence available
to be able to accurately assess the use of palliative care services
by minority ethnic groups (Hill and Penso, 1995, 14).
Why is there a low take up of health care services
among minority ethnic groups?
(i) The epidemiological and medical explanations
It has been suggested that the apparently lower
use of palliative care services among minority ethnic groups reflects
reduced incidences of certain types of cancer and other chronic
diseases among those populations (Fountain, 1999: Hill and Penso,
1995; Sheldon 1995). While there is an acknowledgement that this
situation may be a result of the generally younger age structure
of minority ethnic populations when compared to the UK population
as a whole, a number of epidemiological studies have sought to
identify patterns and incidences of cancer among ethnic minorities.
Once again, however, this is a neglected area of research and
the evidence is somewhat fragmentary (Muir, 1996). However, for
service providers and health care planners, the findings of such
research may provide evidence that existing palliative care facilities
are not as poorly adapted to meeting the needs of minority ethnic
populations as it might initially have been supposed. Whatever
such findings can reveal about the nature of past and existing
services, it is obvious that when trying to determine and plan
adequate levels of palliative care provision for the future, knowledge
of current and future predicted incidences of chronic diseases
such as cancer, is essential.
(ii) Culturally insensitive care explanation
A second reason frequently given to explain
why minority ethnic groups appear to make less demand on palliative
care systems than the majority population, focuses less on patterns
of chronic disease morbidity and mortality and more on the nature
of service provision itself. The central claim is that the services
offered by palliative care providers are "culturally insensitive"
making it difficult for minority ethnic groups to access care
and providing them with a poor experience of care when they do.
This is also a point recognised by epidemiologists and others
who suggest that the lower take up of services reflects the reduced
incidence of cancer among minority ethnic groups. For example,
while concluding that Bangladeshi minority ethnic groups have
lower cancer mortality rates then the rest of the English population,
Balarajan and Raleigh (1998) also suggest that there is no room
for complacency on the part of service providers and that more
culturally sensitive, specialist health care targeting is required
in order to achieve equity in health care (cf Bhopal, 1995, 10).
It is therefore clear that the "epidemiological-medical"
and "culturally insensitive care" explanations for the
low take up of palliative care services among minority ethnic
groups are not mutually exclusive and that both should be taken
into account when planning future service provision.
In summary, current provision of palliative
care services to minority ethnic groups may be regarded as "culturally
insensitive" for the following reasons:
— History and perception of palliative
care services as only being available to white, middle-class patients.
— Reluctance of GPs and other health
care professionals to refer patients to palliative care services.
— Lack of information provided to minority
ethnic groups about the availability of palliative care services.
— Poor communication between service
providers and service users exacerbated by a lack of appropriate
translation facilities.
— Services are not always attuned to
the dietary needs of minority ethnic groups.
— Services are not always attuned to
the spiritual needs of minority ethnic groups.
— Problems are compounded by other
socio-economic factors (eg low income and debt).
— Lack of monitoring of the use of
palliative care services by minority ethnic groups.
— Lack of organisational policy on
issues such as racial harassment.
REDESIGNING PALLIATIVE
CARE
In general, the palliative care profession is
good at reflecting on ways of improving practice and a number
of recent articles in professional journals have focused in on
the question: "how can we meet the needs of our multicultural
communities?" (Hall et al 1998, see also: Thomas 1997;
Prior, 1999; Oliviere, 1999; Salmagne and Keunebroek, 1996; and
Pickett 1993).
Many commentators argue that there is a need
to "return to" the basic philosophies underpinning palliative
care. According to Sheldon (1995, 90), for example, "the
individual and whole person approach basic to palliative care,
which enquires of the patient and carer what their goals are and
makes them central, is still the most appropriate" way of
improving practice. This "whole person" social approach
to health care is also favoured by others with experience of working
with minority ethnic groups. Young, et al (2000, 330),
for example, concluded from their study of palliative care service
provision for minority ethnic groups in Warwickshire, "what
is important is that the uniqueness of every family and situation
is appreciated. Each patient in palliative care merits an individually
tailored approach to care and assumptions must not be made about
needs based crudely on ethnicity or religion. Individualised histories,
personalities and choices make generalisation unacceptable".
This kind of approach clearly tries to see past
cultural difference in order to treat each patient individually.
Other commentators are more willing to use cultural difference
as a resource to work with, rather than around. Such an approach
calls for a more open-ended form of professional practice where
carer and patient display a willingness to learn about each other's
cultural identity. Neuberger (1987 and 1998), for example, argues
that knowledge of a patient's religious and cultural customs,
can become a focus of interaction between service user and service
provider, helping to build up trust and respect (cf Smaje and
Field 1997, 160). In this context palliative care professionals
are encouraged to become "cultural brokers" who are
involved in an act of translation "where messages, instructions
and belief systems are exchanged between cultural groups"
(Pickett, 1993, 105). This broad approach informs similar perspectives
on care which seek to build on cultural difference rather than
work around it. Within Australia and New Zealand, for example,
the concept "culturally safe care" is at the centre
of the profession of palliative medicine and incorporated into
training programmes. According to Prior (1999, 111) culturally
safe health care "goes further than just being culturally
aware or culturally sensitive by advocating a bicultural model
that promotes the distinction between cultures rather than merely
acknowledging them". It is, in the words of Oliviere (1999,
55), about "respecting and nurturing" cultural difference.
Converting such ideal into everyday practice is, however, something
of a challenge, and it is easy to see how such approaches could
end up stereotyping minority ethnic groups as in the case of the
"factfile" approach described above. Fortunately, Oliviere
offers more specific advice about how to turn such approaches
into practice (Table 1).
Table 1
CULTURALLY SAFE PRACTICE IN PALLIATIVE CARE
(AFTER OLIVIERE 1999)
— Be aware of taboos and discrimination.
— Be aware of relevant legislation.
— Be aware and careful about making
assumptions.
— Get to know the patient.
— Discover the patient's situation
within their own culture.
— Communication skills are invaluable.
— Do not use relatives as interpreters.
— Be sensitive but not over sensitive.
— Recognise that attitudes to illness
vary from culture to culture.
— Recognise that grief varies from
culture to culture.
— Balance equality with difference.
— Recognise complexity and multiple
causation of cultural patterns.
— Have an ethnically diverse staff.
— Provide a suitable environment/hospitality
for minority ethnic groups.
— Provide appropriate literature.
— Have a knowledge of different faiths
and religious practices.
— Get to know local religious leaders
of different faiths.
— Provide regular staff training.
— Meet with ethnic groups.
— Be aware of national organisations
related to minority ethnic groups.
— Keep a multi-faith calendar.
— Train bereavement counsellors in
non-western models.
CONCLUSION
This process of recognising and working positively
with cultural difference cannot only be achieved by changing the
policies, organisational structures and working practices of palliative
care organisations. Commentators also recognise that "health
professionals must look at their own culture to understand their
own biases, preconceived ideas and belief and how these may inhibit
them from valuing other people's uniqueness" (Nyatanga 2001,
56). However, this is possibly the most challenging of all aspects
of improving provision.
As a final word, it is worth noting that achieving
equity in palliative care is not a finite process with a definite
end goal. As such, it may pose a challenge to conventional ways
of managing and implementing change within UK healthcare. Just
as cultural and ethnic identities are constantly changing so attempts
to improve services will prove to be a never-ending journey!
February 2004
REFERENCES
Balarajan, R and Raleigh, V (1998) "Patterns
of mortality among Bangladeshis in England and Wales", Ethnicity
and Health, 2 (1/2), pp 5-12.
Bhopal, R (1995) "Ethnicity, race, health
and research: racist, black box, junk or enlightened epidemiology"
Draft of Paper to the Society for Social Medicine Scientific Meeting.
Clarke, M, Finlay, I G, Campbell, I, (1991)
"Cultural boundaries in care", Palliative Medicine,
5, pp 63-65.
DOH (2000) The NHS Cancer Plan, The Stationery
Office, London.
Fountain, A (1999) "Ethnic minorities and
palliative care in Derby", Palliative Medicine, 13,
pp 161-162.
Hall, P, Stone, G, Fiset, V J (1998) "Palliative
care: how can we meet the needs of our multicultural communities?"
Journal of Palliative Care, 14 (2), pp 46-49.
Hill, D and Penso, D (1995) "Opening Doors:
Improving access to hospice and specialist palliative care services
by members of the black and minority ethnic communities",
National Council for Hospice and Specialist Palliative Care
Services, Occasional Paper, 7, London.
Neuberger, J (1987) Caring for People of
Different Faiths, Austin Cornish and Lisa Sainsbury Foundations,
London.
Neuberger, J (1998) "Cultural issues in
palliative care" in Doyle, D, Hanks, G and MacDonald, N (eds)
The Oxford Textbook of Palliative Medicine, Oxford Medical
Publications, Oxford, pp 507-513.
Nyatanga, B (2001) "Celebrating cultural
diversity", International Journal of Palliative Nursing,
7 (2), p 56.
O'Neill, J (1994) "Ethnic minorities—neglected
by palliative care providers?" Journal of Cancer Care,
3, pp 215-220.
Oliviere, D (1999) "Culture and ethnicity",
European Journal of Palliative Care, 6 (2), pp 53-56.
Pickett, M (1993) "Cultural awareness in
the context of terminal illness", Cancer Nursing,
16, pp 102-106.
Prior, D (1999) "Palliative care in marginalised
communities", Progress in Palliative Care, 7 (3),
pp 109-115.
Rees, W D (1986) "Immigrants and the hospice",
Health Trends, 27, pp 114-119.
Salamagne, M, Keunebroek, N (1996) "Catering
for the needs of foreign patients", European Journal of
Palliative Care, 3, pp 32-34.
Shedlon, F (1995) "Will the doors open?
Multicultural issues in palliative care", (Editorial), Palliative
Medicine, 9, pp 89-90.
Smaje, C and Field, D (1997) "Absent minorities?
Ethnicity and the use of palliative care services", in Field,
D, Hockey, J and Small, N (eds) Death, Gender and Ethnicity,
Routledge, London, pp 147-165.
Thomas, V N (1997) "Cancer and minority
ethnic groups: factors likely to improve nurse-patient communication
and facilitate the delivery of sensitive care", Journal
of Cancer Nursing, 1 (3), pp 134-140.
Young, E J C, Webb, L, Siddat, M and Finnegan,
P (2000) "Are attempts to make services culturally sensitive
doomed to be inherently racist", (Research Abstract) Palliative
Medicine, 14, p 330.
12 Rees' focus on "immigrant groups" rather
than "minority ethnic groups" highlights a general problem
facing researchers when trying to investigate the utilisation
of palliative care services. The collection of inadequate or poorly
specified data has frustrated attempts to monitor the use of services
by different ethnic groups. See (Hill and Penso, 1995;
and Sheldon 1995) for further comment.
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