Presented by Dr Shirley Firth at the Hospiscare conference 'Dignity of Difference' on the 5th November 2010.

1. Autonomy, disclosure and
authority with reference to South
Asian patients and families

2. The Dilemmas
 A conflict of interest between the needs of the dying person to prepare for death,
and relatives who fear that such knowledge may cause them to give up hope and
die too soon.
 For professionals in the UK, the conflict between the desire to respect patient
autonomy, and to discuss the prognosis and treatment directly with the patient,
whereas relatives wish to protect them from knowledge which might prove
harmful and cause them to die prematurely.
 The ‘they care for their own’ syndrome – an assumption by the professionals that
the patient is part of an extended or joint family who can take responsibility. This
affects referrals. However, there may not be an extended or joint family, lack of
knowledge about services or local support.

3. Good Deaths
 A conscious, prepared death, detached and with the
mind on God
 Rites of purification, penance. May fast
 Unfinished business dealt with
 Family around to say goodbye, help the person move
to next life with prayers etc.
 Death in sacred space of home, with Ganges water or
Amrit (for Sikhs) in the mouth

4. Familial Cultures
 In Asian relationship-centred cultures, the concept of
symbiosis-reciprocity is typified by an intense emotional
connectedness and interdependence among members of the
closely knit extended family. (Boyle 1998)
 Because of this powerful bond, the person who separates from
it through migration or death may experience profound
‘psychic stress and heightened inner conflict.’ (Kakar 1978)

5. Family Agendas
 While desiring to protect the patient, relatives may have their
own agenda to prevent death (separation fears, etc.). ‘Patients
who have been suffering the disease do not necessarily share
the same evaluations of quality of life with their family
members…[they may be] at different stages on the continuum
between denial and acceptance. (Haley 2002)

6. Disclosure issues with S. Asians
 ..There is a “discourse of palliative care as represented in the literature
[which] invokes a prescriptive culture of dying in terms of open awareness
and a 'new regime of truth ' …with fixed scripts for the patient and the
family for 'coping' and mourning. Any deviations from the script are easily
dubbed as 'denial', while some are perceived as being 'at risk' for
mourning…..
..Qualitative literature conducted across countries reveals a subtle tension
between the varying needs for information and desire to maintain hope
through avoidance of 'unsafe information’".
Chatoo et al, 2002

7. Primacy of the Family
 “Issues of control are not just ones of paternalism but
include deeply held beliefs surrounding individual choice
and 'rights' [which] come up against not only the practical
issue of language, but also beliefs concerning the primacy
of the family, gender relations, and Bengali [and other
South Asian] ideas of appropriate treatment for the
dying” (Gardner 2001:242).

8. Family Rights
 The rights of families to medical knowledge and their
roles in decision-making are just as valid, inalienable and
crucial to the cultural belief systems of many ethnic
minority communities as patient autonomy models are to
Western patient autonomy models. (Kip Jones 2003)

9. ‘They Care For Their Own’ syndrome
 This assumption affects decision making over referrals to hospice or palliative care.
 It is impossible to generalise or stereotype South Asian families, and one cannot
assume there will be an extended family or helpful neighbours.
 Some illnesses are stigmatising, creating shame in admitting anything is wrong.
 Asking for or accepting help from ‘outside’ may also be shameful, and lead to a
loss of honour in being seen to be unable to cope.
 There may be severe financial difficulties and carers (especially women) who may
not know English or where to get help.

10. Culture of Medical Professionals
 All medical staff are equally products of their culture and not just rational,
impartial or
‘effectively neutral actors in relationships with patients, while the patients
themselves are pictured as the ones bringing to the encounter emotion,
pain, values and particular attitudes…whether …Welsh, Cypriot or Sikh’.
Blakemore & Boneham’ (1994)
 Nurses ‘tended to locate western culture and rational, but also located the
South Asian patients’ culture as inferior, bizarre and irrational.
(Vyedelingham 2005)

11. Cultural Competence and Safety
 The concepts of cultural competence, and cultural safety move beyond
practical skills to attitudinal change. Not only do they denote skills and
knowledge which accept “the legitimate values, beliefs and behaviour patterns
of people who are from another ethnic group” which transcend language,
ethnicity, culture and upbringing, but insist on empowering the ethnic
minorities themselves to be involved in the development of culturally safe
practice in partnership with the majority community (Alexander 1999).
 Thus cultural safety aims to provide care which will “recognise, respect and
nurture the unique cultural identity [ ] and safely meet their needs,
expectations and rights”. (Polaschek 1998)

12. A User’s Comment
 Well,… you got to find out the identity of a person to even get to know
them. So I think that's a big ‘if’..
Because if you don’t know a person, you got to find out his identity, go
where he lives, where he goes, where he was born, who’s in his family. And
he’s got to open up, and tell you these things. Because the more you know
about this person, his family, then that’ll make you know more about you.
An African American man, in Kagawa-Singer and Blackwell, 2001