“Had he had cancer I’d have been fine”: inequalities in care provision at the...
Reconceptualising the family and care-centric models: What can a sociology of personal life bring to death studies? by Julie Ellis
1.
2. Symbolic power of family and death
Overview of literatures
Explore care-centric and family systems perspectives
Offer different conceptual perspective – family practices
Discuss what this approach brings to death studies
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3. Good death = accompaniment
(Seale, 1995)
‘Achieving the ‘good death’ depends
substantially on the family’s
competence in offering support,
facilitating preparation for dying and
affirming the patient’s dignity, as
well as saying farewell’
(Kissane and Bloch, 2002, p.1)
Avoiding lonely death: moral issue
Security, comfort, caring: normative about care and caring
idea of family
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4. ‘…much of the research effort has focused on carer’s experiences and
views’ (Kellehear, 2009, p.1)
=
Lack of empirical understanding of the dying person’s perspective
(Kellehear, 2009)
Family members predominantly the subject of empirical interest in
their capacity as carers and/or regarding their views about care
provision
Or, in other limited ways… such as providing proxy and retrospective
accounts of relative’s dying experience (Grande and Ingleton, 2008)
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5. Family/ personal relationships appear in…
1. Work which attempts to understand more general aspects of the
illness/ dying process (e.g. Lawton, 2000)
2. Within studies about something else associated with death (e.g.
what makes a ‘good death’ - Young and Cullen, 1996)
3. Seminal theoretical work related to dying (e.g. Glaser and Strauss,
1968; 1965)
There is little in the sociological literature that focuses primarily and
explicitly on everyday experiences of family life over the dying process
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6. Palliative, nursing and therapeutic literatures
Family conflated with care-giving and provision of care
Considered in relation to their views of care services and
relationships with health care professionals
Few studies take experience of everyday family life as
prime focus of investigation
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7. Family as a ‘unit’ of care (holism in hospice/ palliative care)
Functionalism: family as a system
- roles, functionality, equilibrium, adjustment, developmental stage theories, ‘life
stressors’ (Cook and Oltjenbrums, 1998), ‘adaptational tasks’ (Walsh and
McGoldrick, 2004)
Therefore, functional and dysfunctional families?
‘...very dysfunctional families show maladaptive patterns in dealing with inevitable
losses, clinging together in fantasy and denial to blur reality and insisting on
timelessness and perpetuation of never-broken bonds’ (Walsh and McGoldrick,
2004, p. 8)
Intervention and therapeutic practice in mind
Death is most likely to be experienced as a crisis at some level
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8. Mechanical representation of family, implying that families are
prone to breaking down and need to be fixed
A static, rigid view of family life
There are a series of core metaphors for family systems - the
idea of the family as a machine and a container are both
foundational in systems theory (Rosenblatt, 1994)
Metaphors of family as an entity and as a system neglect to
represent the unboundedness and fluidity of families and what
goes on ‘in’ them (Rosenblatt, 1994)
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9. Family systems and ‘coping’ frameworks represent a particular
way of thinking about families vis a vis death
This way of seeing contributes to a theoretical and empirical
tendency to marginalise the everyday and mundane aspects of
family life during life-threatening illness
Aligns with a problems-based perspective premised on ‘death as
crisis’ discourse
Thinking about family in this way leaves little conceptual scope
to understand dying experiences more holistically… to bring the
mundane and everyday aspects of being a family facing death
into our analyses
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10. Family Practices: ‘often little
In what ways are people fragments of daily life’ (1996, p.189)
doing being a family?
David Morgan (1996)
challenged the functional
notion of family as a static
unit
Practices: everyday actions
and interactions of family
members who are actively
creating family as a lived
experience
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11. Carol Smart (2007)
The interconnected ways in
which people feel and imagine
themselves as related
Thinking about/ imagining
relationships = feelings of
being embedded emotionally
and materially in the lives of
others
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12. ‘I wanted to move out of the flat
world of most sociological accounts
of relationships and families to
incorporate the kinds of emotional
and relational dimensions that are
meaningful in everyday life...
Although, following David Morgan
(1996), I acknowledge that family
is what families do, I also think we
need to explore those families and
relationships which exist in our
imaginings and memories, since
these are just as real’
(Smart, 2007, p.3-4).
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13. Personal/ relational life is:
- a process
- dynamic
- performed
- imagined
- embodied
- material
- felt
- achieved
- created
- produced in the everyday
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14. Addressing theoretical and empirical gaps in death studies, my research:
Stepped aside from more care-based analysis
Approached ill/ dying people and their relatives as family first and
foremost
Didn’t assume illness would be all-defining - to go beyond ‘patients’ and
‘carers’ and matters of ‘coping’
Used sociology of family/ personal life as a conceptual lens through
which to see the mundane and everyday in dying experiences...
challenging the dominance of crisis-based approaches
Produced a more holistic account of families’ dying experiences
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15. “I mean when they first, when they first
tell you that you have got cancer and
that you know for a fact that they can’t
get rid of it all then I did at very first like
when it came to the winter and I’m
thinking oh I don’t know whether to
bother (little laugh) buying a new
winter’s coat or not you know, I mean I
did I must admit I felt like that at first
but then this year I have been out and
bought one cos I thought oh its time I
had a new coat, even though I don’t go
out very often I want something when I
go out...”
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16. Thanks for listening
I would like to acknowledge support generously provided by
my supervisor, Professor Jenny Hockey
I would like to express thanks to the families that took part
in my research
Finally, thanks to the ESRC for funding my research
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