Vulnerability and access to care for South Asian Sikh and Muslim patients with life limiting illness in Scotland: prospective longitudinal qualitative study

To complement the purposive sampling of the study by Worth et al 1
which explores the barriers experienced by Sikh and Muslim communities in
Scotland in providing end-of-life care, we draw attention to some positive
aspects of care at the end-of-life experienced by people whose country of
birth did not have English as its first language in Australia.

In Australia, one in four people were not born in Australia. From
27,000 face-to-face population-wide interviews over a seven year period
exploring end-of-life caregiving, one in three people will have had
someone close to them die an ‘expected’ death in the five years before
responding,2 and one in ten people in the community will have provided
direct care for such a person in the same timeframe.3

The paper by Worth et al emphasises the barriers identified by
patients, their caregivers and health professionals in providing and
receiving this in these specific communities but it cannot be
automatically assumed that lack of uptake equals unmet needs. If whole-of-
population data were generated for Scotland irrespective of health service
utilisation, the picture may be different to the report by Worth et al. In
Australia, the highest rates of referral to specialist palliative care
services are of people with cancer as their primary life-limiting illness,
and the rates of accessing specialised palliative care services are
demonstrably lower for communities whose first language is not English;
Scotland is similar. However, when reasons for lower rates of accessing
specialised palliative care services were explored, the picture changed.4

Despite significantly lower rates of access in each of the following
groups, the accuracy (true positives and true negatives added together) of
the match between perceived needs and service uptake was highest in the
communities who were not born in countries where English is the first
language (87%; non-cancer 69%; lower income 82%; <75 years of age 82%;
and overall 83%).5 When the reason for not perceiving that extra services
were needed was explored, the response that ‘family will provide this
care’ was given significantly more frequently by people whose first
language was not English (48% vs 32% in countries where English is the
first language; p = 0.047). This mirrors the response from Carer #10 in
the interviews reported by Worth et al who reflected that ‘if we ask for
help from outside, what would others say? They would say that she could
not take care of her father-in-law.’

Is lower uptake of specialist palliative care services a reflection
of the inability of these services to provide culturally sensitive care, a
reflection of greater family cohesion and higher levels of filial duty of
people who have shifted country, or a combination of both? We applaud the
important work of Worth and colleagues exploring the experiences of
potentially culturally disadvantaged communities interacting with end-of-
life care services, but we also highlight that lack of service uptake may
not always equate with unmet need. Filial duty and community expectations
may have a major part to play in this match.6

1. Worth A, Irshad T, Bhopal R, Brown D, Lawton J, Grant E, Murray
S, Kendall M, Adams J, Gardee R, Sheikh A. Vulnerability and access to
care for South Asian Sikh and Muslim patients with life limiting illness
in Scotland: prospective longitudinal qualitative study. Br Med J
2009;338:b183.

2. Dy S, Lynn J. Getting services right for those sick enough to
die. Br Med J 2007 10;334(7592):511-3.

3. Abernethy AP, Burns C, Wheeler JL, Currow DC. Defining distinct
caregiver subpopulations by intensity of end-of-life care provided.
Palliat Med 2009;23(1):66-79.

4. Currow DC, Abernethy AP, Fazekas BS. ‘Specialist palliative care
needs of whole populations. A feasibility study using a novel approach.’
Palliat Med 2004;18(3):239-247.

5. Currow DC, Agar M, Sanderson C, Abernethy A. ‘Populations who die
without specialist palliative care: does lower uptake equate with unmet
need?’ Palliat Med 2008;22(1):43-50.

6. Gelfand DE, Balcazar H, Parzuchowski J, Lenox S. Mexicans and
care for the terminally ill: family, hospice and the church. Am J Hospice
Palliat Care 2001;18:391–396.

Competing interests:
None declared