The paradox of health funding for terminally ill older people: Espoused choices, marginalised voices Sue Duke Consultant Practitioner in Cancer Care Education, University of Southampton Jo Wilson Clinical Nurse Specialist in Palliative Care, Royal Berkshire and Battle Hospitals NHS Trust

Outline of research design Narratives in practice (‘within-time-ness’ Ricouer 1981): Older people’s preferred place of care Team’s experience of organising PPC Narratives analysis of case notes (‘historicality’ time Ricouer 1981) All notes older people referred to hospital palliative care team during 2005 (n=157) Identification of issues that influence PPC - within a perceived temporal plot

Co-researchers Supportive and palliative care team: Kay HargreavesOccupational therapist Carol HowardPalliative Care Nurse Helen AndrewsCNS Karolyn BakerCNS Rosie MillsonCNS Jen RamseyCNS Carole CallowayPalliative Care Nurse Lina DimaniSocial Worker Linda GrimblebyTeam Administrator Karla GrimwoodSecretary during study period With Margot GosneyConsultant Gerontologist

Sample characteristics Total number of people referred to hospital palliative care team Number of people referred over 70 years age157 (12%) Study group characteristics (n=157) Age range Malignant diagnosis Non-malignant diagnosis (73%) 31 (27%) PPC achieved Died before PPC achieved 115 (73%) 42 (27%) Required health funding to achieve PPC Discharged with health funding Died before care package in place (funding agreed) Died before health funding approved (care package in place) 97 (62%)

Issues influencing PPC Complexity of funding processes Meshing social and health care to meet needs Definition of terminally ill used in local guidance

Complexity of health funding applications Different in each local PCT (n=7) Process:  Prognosis confirmed by consultant in writing  Fax application form and consultant letter to PCT  Await provisional confirmation for organising care  Assessment of care need – nursing and OT  Arrange and cost care  Ensure PCT happy to fund  Arrange invoicing process between provider and PCT Time span – team standard of 14 days Patient contacts - average 5 direct and 18 in-direct

“.....However, despite advice, if it remains your express wish to return home we can provide care in the form of a 24 hour live-in carer...the sustainability of the care package depends on your co-operation with the carers involved. Should the package break down again then it will be necessary to arrange temporary admission to hospital whilst a nursing home placement is found for you”.

Complexity of organising health and social care – central issues Accurate transfer of information between health and social care teams (Payne et al 2002) Multi-disciplinary approach to assessment of need (Healey et al 2002) Effective team working and team processes (Hubbard and Themess-Huber 2005) Effective decision making processes (Cook et al 2001)

Definition of terminally ill The individual is in the final stages of a terminal illness and is likely to die in the near future. Distinction between someone who has cancer (funding straightforward, 90% PPC achieved) And someone who has non-cancer diagnosis – often seen as a natural and predictable deterioration, typically associated with old age, and not a terminal illness

Theoretical explanation: managerialism Health funding process - covert system of rationing (Vernon et al 2002) Matching need with eligitability criteria:  Dominance of professional over older people (Chevannes 2002)  Tension between agency centred and person- centred objectives (Richards 2001)

Exclusion of older people from health care and palliative care Focus on biomedical needs (diagnosis, prognosis) (Koch and Webb 1996)  older people objectified (Koch and Webb 1996)  physical care focus (Costello 2001) Older people’s cancer needs not met (Bailey and Corner 2003) Needs of people with non-malignant illness not met (eg Addington-Hall 1998, Skilbeck and Payne 2005)

Conclusion Narrative appropriate methodology to research practice and to understand issues influencing health funding and achievement of policy re PPC Where health funding required to fund PPC it is influenced by funding process, complexity of care needs and the definition of terminally ill used Research process has helped us to:  recognise older people’s palliative care needs  assess how these are being met and marginalised  recognise the skill required to work with older people and their families to achieve their PPC  challenge health funding process

Achieving PPC ‘Inclusion devices’:  Palliative care and elderly care team  Timely referral  Agreed processes  Resources available (equipment, out of hours services, medications, carers)

Family Important to patient achieving PPC Family to act as care co-ordinator/manager Informed consent

157 older people referred to team 2005 N= 60 do not require health funding to achieve their PPC N=97 require health funding to achieve their PPC N= 65 discharged with funding N= 32 died in hospital N=41 home with care package N=24 nursing home N=12 died in hospital with funding in place N=20 died in hospital as funding not in place PPC Nursing home = 17 PPC Home = 3 N=4 died before discharge could be achieved – care package in place PPC Nursing home = 2 (waiting for place) PPC Home = 2 (rapidly deteriorated) N=8 died care package not complete PPC nursing home =5 (family or social worker in process of choosing a home) PPC home = 3 (all rapidly deteriorated)

Preferred Place of Care HomeNursing home HospiceCommunity hospital Remain in current hospital Initial PPC Revised PPC Actual PPC