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
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
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)
THEMES Uncertainty & Reassurance Roles &Relationships Communication
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
TRIADIC CARE & SUPPORT PLACE OF CARE Patient Informal Formal care care & & support support
PRACTICAL ASPECTS OF CARE‘Broadly, the person who has emerged from much of this literature isan automaton who lifts, toilets, washes, medicates, cleans, shops,feeds, watches over and, most of all, worries.’ (Jones 2001: 18)
THE ROLE OF FAMILY CARERS Responsibility and decision making Carer as expert
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 rightuntil 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.
“Erm some people can‟t and I understand that. Erm ,it‟s just how youare 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 aswe could for him. Erm and everybody else helped by doing their bit, sothat was good really”.Sharon, cared for her husband who was diagnosed with ProgressiveSupranuclear Palsy (PSP). He died at home.
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 ofthe 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 wantedwhat- while she was in that state, for her to have the best treatment and I knewthat [name of Hospice] would give her the best treatment. So it was peace ofmind for me and I‟d know that while she was there, that er, she was getting thevery best”.Paul, middle aged gentleman, cared for his wife who had cancer with the support offormal carers, district nurses and his family.
ROLES & PLACE OF CARE“…coz you know, a nurse is trying to speak tosomeone and the buzzers going off and everybodywants the commode... and then the patients, they‟rewetting themselves or they‟re getting angry orthey‟re getting upset and....it was just horrible towatchand as I say, thankfully my mum had me and....andI....I feel sick at the thought of if I hadn’t been”.Jean, carer for her mother, who was diagnosed with COPD.
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)
“Erm, but the worst of it was when you‟ve have, certainly a couple of the nurses who wouldsay, “oh I, I need to look at him” because he‟d had er he had morphine only you know 2 or 3 hoursbefore erm, and er you know erm, and then they‟d look and they‟d say “well he doesn‟t appear to be inpain 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 itfor me?” I had to be very strong to be able to say that and er, and you know, often after it had beendealt with you know I would break down in tears [upset] because I felt that I was being questioned anderm, er, whether they had seen me as somebody who was trying to kill my husband er and as I sayquestion 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 inknowing how to er, er treat the patient and being available all the time to do it. Checking regularly er onthe patient, I‟ve seen it happen. Erm and as it is on the on the general medical ward, that regularchecking simply doesn‟t happen. I mean you have to do it yourself, you have to ask for it and you have tosay “can you come, can you, you know, can you do this” …..Catherine, cared for her husband who had Multiple Sclerosis.
“I kept a diary to help myself, stop myselfgoing insane in those eight months and Iactually wrote on the front of the diary, “Ifeel like I‟m on an escalator going downinto hell.” Because that was how I felt”.
“I think we just felt that a huge weight hadbeen lifted off our shoulders when he went intopalliative care. I could stop being a carer and Icould become a wife for those last weeks.It wasn‟t that they stopped us caring forhim...but they took all that responsibility awayfrom me and I just felt as if a huge weight hadbeen lifted.[Pause]That was just absolutely wonderful”.
“I could sit by him and I wasn‟t worried about makingmeals like I was at home and worrying about giving himhis medication and worrying about getting him on thetoilet in time. And I could just sit and talk to him. I justtalked and talked and talked- talked about from when wemet – we were going out from when we were eighteen...”
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
REFERENCESBury, M. (1982) Chronic illness as biographical disruption, Sociology of Health and Illness Vol. 4 No. 2Collins English Dictionary (2012), www.collinsdictionary.com/dictionaryJones, 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.366629Lowson, 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.