Vulnerability and access to care for South Asian Sikh and Muslim patients with life limiting illness in Scotland: prospective longitudinal qualitative studyBMJ 2009; 338 doi: https://doi.org/10.1136/bmj.b183 (Published 03 February 2009) Cite this as: BMJ 2009;338:b183
All rapid responses
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
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: No competing interests
We are grateful to Dr Keeley for raising pertinent issues in his
response to our paper. We too were shocked by the case referred to, and
the authors debated how to deal with it, both in terms of the individual’s
care and also in the subsequent reporting and publishing of the details of
this important and illustrative case. There are no clear-cut solutions to
these ethical dilemmas and we stand by our carefully considered judgement
of the case.
It is important to make clear that we use the case as an example of
direct, rather than institutional racism. Also relevant to note is that we
do not use the term ‘institutional racism’ to label entire institutions as
racist, but rather use this term to describe policies and traditions
within them which can disadvantage ethnic minorities.1 This in itself is
not a new claim with respect to aspects of NHS care;2 in this study, we
identified institutional racism in the failure of some institutions in our
study to meet basic communication and dietary needs and provide culturally
sensitive care. We also point out that such institutional discrimination
is usually unwitting.
Turning to the case in point, Dr Keeley asks if the patient’s claims
were verified. We were in this study primarily concerned with
understanding patient perceptions of care, but that said, verification of
the patients’ perceptions were possible on two fronts. Firstly, the
researcher observed the patient being treated rudely by a member of staff.
Secondly, the professional interview provided corroboration of the
patient’s wider claims. This professional was subsequently instrumental in
ensuring that the patient received better care, within the same
institution, with which the patient was extremely satisfied. These
observations thus indicate that appropriate action was taken within the
institution to improve the care delivered to this individual.
Dr Keeley then suggests it is the responsibility of the research team
to confront racism head on. Whilst we of course appreciate and understand
this sentiment, respectfully we disagree: the responsibilities of
researchers are different to those of clinicians.3 Many of the authors are
both researchers and clinicians and are highly aware of the ethical
dilemmas of balancing duty of care with maintaining the scientific rigour
of the research.4 Reporting the experiences of participants as accurately
as possible, with the ultimate aim of improving care for all, is the main
aim of research. Researchers often uncover evidence of unsatisfactory
care, and have to make a judgement about whether they have an ethical duty
to intervene. They rarely do, as they risk doing more harm than good to
the individual patient and damaging future access to the field for other
researchers. In our paper, we also documented the considerable impact that
an individual practitioner had on dramatically improving the quality of
care provision to the patient in question. Direct intervention in such a
case would have curtailed our opportunity to report and understand this.
Publication of research findings, however uncomfortable to read, can
and does contribute to influencing practice. We are aware of at least one
Health Board which is now taking action to address the wider issues we
raise in the paper. We were encouraged by the willingness of many health
and social care professionals in our study to both acknowledge the
inadequacies of care for ethnic minority groups and their willingness to
learn how to provide better care.
1. Macpherson W. Report for the Stephen Lawrence Inquiry. London: The
Stationery Office, 1999.
2. Warden J. NHS to come under Race Relations Act. BMJ 1999; 318 (7184):
3. Sheikh A, Hurwitz B, Parker M. Ethical and research dilemmas arising
from a questionnaire study of psychological morbidity among general
practice managers. BJGP 2001; 51: 32-35.
4. Jubb AM. Palliative care research: trading ethics for an evidence base.
J Med Ethics 2002;28:342-346
Competing interests: No competing interests
In their paper on the vulnerabilty of South Asian patients,(Vulnerability and access to care for South Asian Sikh and Muslim patients with life limiting illness in Scotland: prospective longitudinal qualitative study) Worth et al include a vignette in which a serious accusation is made - at least of professional misconduct and probably worse:
"One of the nurses said to me that ‘I will paint a horrible picture of you and report you to the immigration and they will deport you,’ that’s how they treat me." (Patient 6, Sikh man with non-malignant illness, stage 1 interview)
He described how Asian staff advised him:
"They tell me to keep smiling all the time. They tell me that you should be grateful because you are receiving free of charge treatment which would not be possible in [own country]."
The professional interviewed confirmed that his care had been poor, his dietary needs unmet, and his treatment discriminatory:
"It did appear to me that some of the clinicians and managers who had a clinical background, in my view probably should have known better, seemed to be suggesting that they send him back to [own country] as soon as they possibly could, apparently without any notion of the consequences." (Patient 6, interview with professional)
This is used, then, as evidence of institutional racism.
Some would dispute the very existence of institutional racism. Individuals can be and are racist, but institutions? Unless their policies are overtly racist (as were those of apartheid-era South Africa) it is difficult to sustain the charge that an entire institution (including the one in which I work which is covered by the research done in the study) is racist.
What steps have been taken to verify the claim and if verified to discipline the individual concerned? Clearly, if the authors are concerned to make an institution less racist they should confront the racists within it.
If they have not, why not?
Competing interests: No competing interests