The paradox of health funding for terminally ill older people: Espoused choices, marginalised voices

Sue DukeConsultant Practitioner in Cancer Care Education, University of Southampton

Jo WilsonClinical 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-researchersSupportive and palliative care team: Kay Hargreaves Occupational therapist Carol Howard Palliative Care Nurse

Helen Andrews CNS Karolyn Baker CNS Rosie Millson CNS Jen Ramsey CNS Carole Calloway Palliative Care Nurse Lina Dimani Social Worker Linda Grimbleby Team Administrator Karla Grimwood Secretary during study period

With Margot Gosney Consultant Gerontologist

Sample characteristicsTotal number of people referred to hospital palliative care team 2005

1282

Number of people referred over 70 years age

157 (12%)

Study group characteristics (n=157)Age rangeMalignant diagnosisNon-malignant diagnosis

70-97126 (73%)

31 (27%)

PPC achieved Died before PPC achieved

115 (73%)42 (27%)

Required health funding to achieve PPCDischarged with health fundingDied before care package in place (funding agreed)Died before health funding approved (care package in place)

97 (62%)651220

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 placePPC Nursing home = 17PPC 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

Home Nursing home

Hospice Community hospital

Remain in current hospital

Initial PPC 81 39 16 3 15

Revised PPC

49 48 34 7 27

Actual PPC

41 24 18 5 67