A presentation from the BSA Death, Dying and Bereavement Conference held on 19 November 2012.

1. The role of family carers in end of life care
Laurie Dunn
Academic Palliative and Supportive Care Studies Group (APSCSG)
Department of Health Services Research
University of Liverpool
Supervisors: Professor Mari Lloyd-Williams
Dr Paula Byrne

2. BACKGROUND
 There are 6.8 million family carers in the UK
 Who are informal caregivers?
 spouse, other family, friends, neighbours
 There is usually one main family caregiver, but sometimes caring is
split between a number of family members.
 Focus of this study is main caregiver
 Both patient and carer aged 18+
 Informal caregivers may also get additional support from paid
(formal) caregivers, through the NHS or private organisations

3. METHODS
 51 retrospective narrative interviews with bereaved family caregivers,
interviewed between 3 months and 5 years after death.
 Thematic and narrative approach adopted (Riesmann 2008)

4. THEMES
Uncertainty &
Reassurance
Roles &
Relationships
Communication

5.  Unanticipated sudden role vs gradual role
“I was washing her and um....doing whatever and that was basically
the beginning of it.” Jean
 Relatives primarily identify themselves as a person’s ‘daughter’ or
‘husband’.
 Relatives rarely identified themselves as a ‘carer’ until later in the
illness trajectory.
 Legalities
 Issues around confidentiality

6. TRIADIC CARE & SUPPORT
PLACE OF CARE
Patient
Informal Formal care
care & & support
support

7. PRACTICAL ASPECTS OF CARE
‘Broadly, the person who has emerged from much of this literature is
an automaton who lifts, toilets, washes, medicates, cleans, shops,
feeds, watches over and, most of all, worries.’
(Jones 2001: 18)

8. THE ROLE OF FAMILY CARERS
 Responsibility and decision making
 Carer as expert

9. RESPONSIBILITY & DECISION MAKING:
HOW FAMILY CARERS UNDERSTAND THEIR ROLE
“It were just giving me a little break, but I wanted to care for my wife right
until the very very end.”
“But er, I did feel that they was doing a job that I should‟ve been doing. I
always felt that it were my job to look after her [upset]. And, but I did feel
er...that they was helping me. You know, I do need a break, I do. Probably-
if she‟d had lasted another few weeks, I‟d of had a nervous
breakdown........They were long days, and I did struggle, but it was my
own- [it was] what I wanted. Help was there if I needed it.”
Harry, elderly gentleman who cared for his wife who had lung cancer, at home.

10. “Erm some people can‟t and I understand that. Erm ,it‟s just how you
are I think erm and if you can do it, I think you should do it really…
Erm, it helps I think in the grieving situation as well; I‟m still grieving,
but not as bad because I‟ve done it and I know that we did as much as
we could for him. Erm and everybody else helped by doing their bit, so
that was good really”.
Sharon, cared for her husband who was diagnosed with Progressive
Supranuclear Palsy (PSP). He died at home.

11. RESPONSIBILITY & DECISION MAKING:
DECISION MAKING ABOUT PLACE OF CARE AT END OF LIFE
“I kept [my wife] here „til the day before [she died] and then it was only sort of
the last 24 hours when she went into an unconscious state where I thought well,
it wasn‟t the fact that I couldn‟t or I didn‟t want to look after her, I just wanted
what- while she was in that state, for her to have the best treatment and I knew
that [name of Hospice] would give her the best treatment. So it was peace of
mind for me and I‟d know that while she was there, that er, she was getting the
very best”.
Paul, middle aged gentleman, cared for his wife who had cancer with the support of
formal carers, district nurses and his family.

12. ROLES & PLACE OF CARE
“…coz you know, a nurse is trying to speak to
someone and the buzzers going off and everybody
wants the commode... and then the patients, they‟re
wetting themselves or they‟re getting angry or
they‟re getting upset and....it was just horrible to
watch
and as I say, thankfully my mum had me and....and
I....I feel sick at the thought of if I hadn’t been”.
Jean, carer for her mother, who was diagnosed with COPD.

13. CARERS AS ‘EXPERTS’
“A person who has extensive skill or knowledge in a particular field”
Collins Dictionary (2012)
 Carers as experts model (Nolan et al 1996)
 partnership between formal and informal care
 recognises the importance of change over time
 acknowledges that a shifting balance between power and expert knowledge
at different points of the illness trajectory (Nolan, 2001)
 Power dynamics at home vs in hospital
Traditional care relationships (Throne et al 2000, Nolan 2003)
 From ‘conductor’ to ‘second fiddle’: an orchestral analogy (Lowson et al 2012)

14. “Erm, but the worst of it was when you‟ve have, certainly a couple of the nurses who would
say, “oh I, I need to look at him” because he‟d had er he had morphine only you know 2 or 3 hours
before erm, and er you know erm, and then they‟d look and they‟d say “well he doesn‟t appear to be in
pain to me” and I said “well he is in pain”, you know, “I saw it, I can see it er, er and will you please get it
for me?”
I had to be very strong to be able to say that and er, and you know, often after it had been
dealt with you know I would break down in tears [upset] because I felt that I was being questioned and
erm, er, whether they had seen me as somebody who was trying to kill my husband er and as I say
question your erm, decision making. Erm, that was awful, that was awful, absolutely awful.
That wouldn‟t have happened in a hospice, because erm, the hospice would be on top of it and skilled in
knowing how to er, er treat the patient and being available all the time to do it. Checking regularly er on
the patient, I‟ve seen it happen. Erm and as it is on the on the general medical ward, that regular
checking simply doesn‟t happen. I mean you have to do it yourself, you have to ask for it and you have to
say “can you come, can you, you know, can you do this” …..
Catherine, cared for her husband who had Multiple Sclerosis.

15. Pauline‟s experience…

16. “I kept a diary to help myself, stop myself
going insane in those eight months and I
actually wrote on the front of the diary, “I
feel like I‟m on an escalator going down
into hell.” Because that was how I felt”.

17. “I think we just felt that a huge weight had
been lifted off our shoulders when he went into
palliative care. I could stop being a carer and I
could become a wife for those last weeks.
It wasn‟t that they stopped us caring for
him...but they took all that responsibility away
from me and I just felt as if a huge weight had
been lifted.
[Pause]
That was just absolutely wonderful”.

18. “I could sit by him and I wasn‟t worried about making
meals like I was at home and worrying about giving him
his medication and worrying about getting him on the
toilet in time. And I could just sit and talk to him. I just
talked and talked and talked- talked about from when we
met – we were going out from when we were eighteen...”

19. CONCLUSION
 Complex role of family carers- much more than practical aspects of
care
 Importance of both formal and informal support for both carers and
patients
 Inadequate and poor quality support leads to worry and anxiety,
feeling isolated, alone and overwhelmed
 Possible biographical impact of this (Bury 1982)
 When formal and informal systems of care interact, it is possible to
deliver the best possible quality of life for the patient and indeed for
the carer

20. REFERENCES
Bury, M. (1982) Chronic illness as biographical disruption, Sociology of Health and Illness Vol. 4 No. 2
Collins English Dictionary (2012), www.collinsdictionary.com/dictionary
Jones, K. (2001) Narratives of Identity & the Informal Care Role, PhD thesis, De Montfort University. Available at
http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.366629
Lowson, E., Hanratty, B., Holmes, L., Addington-Hall, J., Grande, G., Payne, S. and Seymour, J. (2012) From
`conductor' to `second fiddle'- older adult care recipients' perspectives on transitions in family caring at hospital
admission. International Journal of Nursing Studies, (in press)
Nolan, M. R., Grant, G., Keady, J. (1996). Understanding Family Care. A multidimensional model of care and
coping. Buckingham. Open University Press.
Nolan, M.R. (2001) Successful ageing: keeping the ‘person’ in person centred care, British Journal of Nursing,
10(7): 450– 4.
Nolan, M., Lundh, U., Grant, G., Keady, J. (2003). Partnerships in Family Care: understanding the caregiving
career. England. Open University Press.
Riessman (2008) Narrative Methods for the Human Sciences. London, Sage.
Thorne, S.E., Nyhlin, K.T. and Paterson, D.L. (2000) Attitudes towards patient expertise in chronic illness,
International Journal of Nursing Studies, 37: 303– 11.

21. e-mail: ldunn@liv.ac.uk