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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
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Narratives in practice (‘within-time-ness’ Ricouer
1981):
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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 Hargreaves
Occupational therapist
 Carol Howard
Palliative Care Nurse
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Helen Andrews
Karolyn Baker
Rosie Millson
Jen Ramsey
Carole Calloway
Lina Dimani
Linda Grimbleby
Karla Grimwood
With
 Margot Gosney
CNS
CNS
CNS
CNS
Palliative Care Nurse
Social Worker
Team Administrator
Secretary during study period
Consultant Gerontologist
Sample characteristics
Total number of people referred to hospital palliative care
team 2005
Number of people referred over 70 years age
1282
157
(12%)
Study group characteristics (n=157)
Age range
Malignant diagnosis
Non-malignant diagnosis
70-97
126 (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%)
65
12
20
Issues influencing PPC
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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
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Different in each local PCT (n=7)
Process:
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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
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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
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The individual is in the final stages of a terminal
illness and is likely to die in the near future.
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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
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Theoretical explanation: managerialism
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Health funding process - covert system of
rationing (Vernon et al 2002)
Matching need with eligitability criteria:
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Dominance of professional over older people
(Chevannes 2002)
Tension between agency centred and personcentred objectives (Richards 2001)
Exclusion of older people from health
care and palliative care
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Focus on biomedical needs (diagnosis,
prognosis) (Koch and Webb 1996)
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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
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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:
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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
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‘Inclusion devices’:
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Palliative care and elderly care team
Timely referral
Agreed processes
Resources available (equipment, out of hours
services, medications, carers)
Family
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Important to patient achieving PPC
Family to act as care co-ordinator/manager
Informed consent
N= 60
do not require
health funding to
achieve their
PPC
157 older
people
referred to
team 2005
N=97
require health
funding to
achieve their
PPC
N=41 home
with care
package
N= 65
discharged
with
funding
N= 32 died
in hospital
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
Home Nursing
home
Hospice
Community Remain in
hospital
current
hospital
Initial PPC
81
39
16
3
15
Revised
PPC
49
48
34
7
27
Actual
PPC
41
24
18
5
67