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Can guidelines and routine screening improve the match between levels of needs and utilisation of palliative care
services?
Professor Afaf Girgis Director, Centre for Health Research & Psycho-oncology (CHeRP)
The Cancer Council NSW, The University of Newcastle & the Hunter Medical Research Institute
T he situation of Mount L ofty was found
from hen ce and from som e other cr os s
bearings, to be 34¡ 59' south and 138¡ 42'
eas t. N o land was visible so far to the
nor th as where the trees appeared above
the hor iz on, which showed the coast to
be very low, and our sound ings were
fast d ecreasing.
From noon to six o'clock w e ran thir ty
m iles to the n or thwar d, skirting a sandy
sh or e at the distance of five, an d thence
to eight miles; the dep th w as then 5
fathom s, an d w e dropp ed the anch or upon
a bottom of s and, m ixed w ith pieces of
dead cor al.
Flinders University
The
University of
Newcastle
T he situation of Mount L ofty was found
from hen ce and from som e other cr os s
bearings, to be 34¡ 59' south and 138¡ 42'
eas t. N o land was visible so far to the
nor th as where the trees appeared above
the hor iz on, which showed the coast to
be very low, and our sound ings were
fast d ecreasing.
From noon to six o'clock w e ran thir ty
m iles to the n or thwar d, skirting a sandy
sh or e at the distance of five, an d thence
to eight miles; the dep th w as then 5
fathom s, an d w e dropp ed the anch or upon
a bottom of s and, m ixed w ith pieces of
dead cor al.
Flinders University
The
University of
Newcastle
Outline of presentation
• National policies on specialist palliative care (SPC)
• What do we know about SPC referrals & utilisation in Australia?
• Can we bridge the gap between current and best practice?
• What next?
National policy on PC ……
PCA landmark documents provide a framework for needs-based and equitable access to quality end-of-life care:
• Palliative Care Service Provision in Australia: A Planning Guide (2003)
• Standards for Providing Quality Palliative Care for all Australians (2005)
• A Guide to Palliative Care Service Development: A population based approach (2005)
Definition
Palliative care:• Aims to optimise level of function and
comfort for people with life-limiting illness (LLI) and their support network
• Includes physical, psychological, spiritual, cultural, financial, sexual and social domains of care
PCA (2005). A Guide to Palliative Care Service Development: A population based approach.
T he situation of Mount L ofty was found
from hen ce and from som e other cr os s
bearings, to be 34¡ 59' south and 138¡ 42'
eas t. N o land was visible so far to the
nor th as where the trees appeared above
the hor iz on, which showed the coast to
be very low, and our sound ings were
fast d ecreasing.
From noon to six o'clock w e ran thir ty
m iles to the n or thwar d, skirting a sandy
sh or e at the distance of five, an d thence
to eight miles; the dep th w as then 5
fathom s, an d w e dropp ed the anch or upon
a bottom of s and, m ixed w ith pieces of
dead cor al.
Flinders University
The
University of
Newcastle
What do we know about SPC referrals & utilisation in
Australia?
A majority view:“I think (of palliative care) really as the patient thinks, that I talk about end of life … I would prefer to retain the term palliative care for what the ordinary punter understands it to be, which is end of life issues”
Perceptions about PC ……….
A minority view:“I don’t believe it’s the time at which a referral to palliative care is done, but the critical thing is the nature of the event that precipitates the referral”
Johnson 2006 (n=40 doctors from across Australia – qualitative study)
PCA (2005). A Guide to Palliative Care Service Development: A population based approach.
Not all who have a LLI will need specialist care - needs-based model
Require ongoing specialist care
Require consultation care
Incr
easi
ng in
tens
ity o
f nee
ds
But, is there a mismatch between needs and SPC utilisation?
Currow et al. Specialist palliative care needs of whole populations: A feasibility study using a novel approach. Pall Med 2004;18(3):239-247
PLLI who utilise a SPCS
Yes No
Yes 54% (42%-62%)
16% (11%-31%)
70% PLLI who would benefit from a palliative care service (need)
No 2.1% (1.6%-20%)
28% (21-41%)
30%
56% 44% 100%
Who misses out on PC?
• The elderly• People in rural & regional areas• People of lower SES• Indigenous Australians• People whose primary life-limiting
illness is not cancer
Eager et al 2004, Good et al 2004, PCA 1999, Hunt et al 1996, McNamara et al 2004, Higginson et al 1999, Sullivan et al 2003
T he situation of Mount L ofty was found
from hen ce and from som e other cr os s
bearings, to be 34¡ 59' south and 138¡ 42'
eas t. N o land was visible so far to the
nor th as where the trees appeared above
the hor iz on, which showed the coast to
be very low, and our sound ings were
fast d ecreasing.
From noon to six o'clock w e ran thir ty
m iles to the n or thwar d, skirting a sandy
sh or e at the distance of five, an d thence
to eight miles; the dep th w as then 5
fathom s, an d w e dropp ed the anch or upon
a bottom of s and, m ixed w ith pieces of
dead cor al.
Flinders University
The
University of
Newcastle
Can we bridge the gap between current and best
practice?
“(Palliative care is beneficial) in being sure that all their needs are being met …. just in terms of having aids for daily living, for which people may be afraid to ask, rails for the toilets …having foods that are appropriate for them, and other issues such as having their financial and relationship affairs in order”
Johnson 2006 (n=40 doctors from across Australia)
Challenges, eg:
• Misperceptions about PC • Limited or stretched PC resources• Changing the balance to needs-based
rather than prognosis-based referrals• Ensuring multiple SPC entry points for
those who need it most• Facilitating exit from, as well as entry to
SPC services
Support for patients, families and carers in
the community
Increased access to palliative care
medicines in the community
Education, training and support for the
workforce
Research and quality improvement for
palliative care services
PBS listings for palliative care
medications
Community Awareness PEPA
Nurses, GPs, Allied Health,
Rural Palliative Care Program
Knowledge Network & CareSearch
NHMRC Research Program
Advance Care Planning Bereavement
Undergraduate Curriculum
Postgraduate Courses Palliative Care
Outcomes Collaboration
Guidelines for needs-based
assessment & referral
Vocational Education
Guidelines for a Palliative Approach in aged care – RACF and Community
Paediatric Palliative Care
Resource
Carers of Palliative Care patients Information development
framework to support quality improvement
Quality use of medicines
Palliative Care patients living at
home
Local Palliative Care Grants Program
Palliative Care Clinical Studies Collaborative
Palliative Care Medicines Working Group
RURAL AGED CARE PAEDIATRIC INDIGENOUS
Department of Health & Ageing
Centre for Health Research & Psycho- oncology (CHeRP) Team: Afaf Girgis, Claire Johnson, Amy Waller
National Project Team: David Currow, Linda Kristjanson, Geoff Mitchell, Patsy Yates, Brian Kelly, Martin Tattersall, David Sibbritt, Amanda Neil
Palliative Care Program TeamT he situation of Mount L ofty was found
from hen ce and from som e other cr os s
bearings, to be 34¡ 59' south and 138¡ 42'
eas t. N o land was visible so far to the
nor th as where the trees appeared above
the hor iz on, which showed the coast to
be very low, and our sound ings were
fast d ecreasing.
From noon to six o'clock w e ran thir ty
m iles to the n or thwar d, skirting a sandy
sh or e at the distance of five, an d thence
to eight miles; the dep th w as then 5
fathom s, an d w e dropp ed the anch or upon
a bottom of s and, m ixed w ith pieces of
dead cor al.
Flinders University
The
University of
Newcastle
Why another set of Guidelines?
Systematic reviews conclude that Guidelines:• Improve the process of care• Improve patient outcomes• Increase involvement & confidence in
decisions• Are useful training tools
Grimshaw JM, Russell IT, Lancet 1993;342(27):1317-1322; 45. Boon K, Tan H. Int J Health Care Quality Assurance 2006;19(2):195-220.
Developing the Palliative Care Needs Assessment Guidelines• Extensive literature review & rating of levels
of evidence• National expert review panel (n=66)
– referrer groups (incl oncologists, physicians, surgeons GPs
– palliative care clinicians– learned colleges – consumer advocates; patients and carers– nurses, allied health & supportive care providers– health ethicists, clergy, researchers, health economists
Developing the Palliative Care Needs Assessment Guidelines• Extensive literature review & rating of levels
of evidence• National expert review panel• National consensus meeting (n=66)• Revision of Guidelines – 9 chapters &
summary of key evidence:– Background– Utilisation of PC services– Patient issues – physical, psychosocial, spiritual,
cultural and other relevant issues– Caregiver and family issues– Health professional issues
Guidelines will:
• Help health professionals whose primary work is not in PC (GPs, community nurses, specialists, allied health professionals, etc,) to objectively determine whether or not they are currently meeting the needs of individual patients and their families.
• Provide a framework for initial and ongoing assessment of the need for and degree of SPC team involvement in the care of individual patients and their families.
Facilitating the uptake of the Guidelines
Endorsement by key bodies• Accompanying screening tools or
checklists• Appropriate training and dissemination• Consumer resources
Screening tools and checklists
With appropriate instruction, can:• Facilitate communication between patients,
caregivers and health professionals• Facilitate tailoring of interventions - prioritise
limited resources • Increase detection of issues • Increase referrals
Wen KY, Gustafson DH. Health & Quality of Life Outcomes 2004;2(1):11Tamburini M et al. Annals of Oncology 2000;11(1):31-37.
The Palliative Care Needs Assessment Tool (PC-NAT)
Principles underpinning the PC-NAT:• Completed in very short time (~5 minutes) • Encompasses all needs domains in the
Guidelines• Can be administered by any health professional• Draws on information that should already be
available• Able to be transferred to electronic data
collection tools in the future
Health ProfessionalsFor all patients who present with metastatic, recurrent or locally extensive disease or cancer that is not amenable to cure, or with haematological malignancy where there is
relapse, resistant or refractory disease.
CompletePALLIATIVE CARE NEEDS ASSESSMENT TOOL (PC-NAT)
Care by primary health care
provider
Short-term involvement of a SPCS, with
continuing care from primary health care
provider
Degree of ongoing involvement of a
SPCS for foreseeable future
Ongoing, consistent
involvement of SPCS until death
If minimal criteria are met(to be developed)
If minimal criteria not met, continue care and reassess at next visit
(advise patient/family on action to take if patient status changes)
SPCSSPCS to conduct comprehensive assessment and recommend degree of specialist
team involvement based on level of need/strength & availability of services (including skills of referrer)
Needs of patient, family/caregiver or service providerAt all levels, primary care providers make referrals to SPCSs based on needs
and are supported in their roleLOW HIGH
Confirmation of primary care
approach
Brief SPCS Consultation
Consultation with
intermittent follow-up
Ongoing, high level
involvement
Rea
sses
s at
nex
t vis
itR
eass
ess
at n
ext v
isit
Rea
sses
s at
nex
t vis
it
Figure 1: Model for needs-based assessment and triage to appropriate level of palliative care service involvement
Health ProfessionalsFor all patients who present with metastatic, recurrent or locally extensive disease or cancer that is not amenable to cure, or with haematological malignancy where there is
relapse, resistant or refractory disease.
CompletePALLIATIVE CARE NEEDS ASSESSMENT TOOL (PC-NAT)
Care by primary health care
provider
Short-term involvement of a SPCS, with
continuing care from primary health care
provider
Degree of ongoing involvement of a
SPCS for foreseeable future
Ongoing, consistent
involvement of SPCS until death
If minimal criteria are met(to be developed)
If minimal criteria not met, continue care and reassess at next visit
(advise patient/family on action to take if patient status changes)
SPCSSPCS to conduct comprehensive assessment and recommend degree of specialist
team involvement based on level of need/strength & availability of services (including skills of referrer)
Needs of patient, family/caregiver or service providerAt all levels, primary care providers make referrals to SPCSs based on needs
and are supported in their roleLOW HIGH
Confirmation of primary care
approach
Brief SPCS Consultation
Consultation with
intermittent follow-up
Ongoing, high level
involvement
Rea
sses
s at
nex
t vis
itR
eass
ess
at n
ext v
isit
Rea
sses
s at
nex
t vis
it
Figure 1: Model for needs-based assessment and triage to appropriate level of palliative care service involvement
Pilot testing of PC-NAT• Sample (n=103):
– 18 GPs - Launceston (CME points)– 25 Oncologists (radiation, medical, haematology, PC) -
Brisbane & Newcastle– 39 nurses (community, radiation oncology, palliative
care, haematology) - Brisbane– 21 allied health workers (social workers, occupational
therapists, radiation therapists, speech pathologists, dieticians and pastoral worker) - Brisbane
• Simulated patients & caregivers with GP, oncologist, nurse - DVD plus “referral form”
Pilot testing of PC-NAT
High content and face validityEasy & quick to completeEncourages consideration of range of needsCan be completed by any health care provider
X Low reliability was found for the patient spirituality, information and health beliefs- cultural-social domains; and for the caregiver functional status and bereavement domains
Facilitating the uptake of the Guidelines
Endorsement by key bodiesAccompanying screening tools or checklists
• Appropriate training and dissemination– Academic detailing– Training resources for future use by PC
services and the RACGPs– National “Train the Trainer” program in 2009– National dissemination plan in 2009
• Consumer resources
T he situation of Mount L ofty was found
from hen ce and from som e other cr os s
bearings, to be 34¡ 59' south and 138¡ 42'
eas t. N o land was visible so far to the
nor th as where the trees appeared above
the hor iz on, which showed the coast to
be very low, and our sound ings were
fast d ecreasing.
From noon to six o'clock w e ran thir ty
m iles to the n or thwar d, skirting a sandy
sh or e at the distance of five, an d thence
to eight miles; the dep th w as then 5
fathom s, an d w e dropp ed the anch or upon
a bottom of s and, m ixed w ith pieces of
dead cor al.
Flinders University
The
University of
Newcastle
What next?
Aim: • To evaluate the degree to which
systematic utilisation of the Guidelines and PC-NAT increases the match between the levels of unmet patient and caregiver needs and service utilisation
Evaluation of Guidelines and PC-NAT (Aug 2006 – Dec 2008)
Phase 5:• Develop national dissemination plan• Deliver “Train the Trainer” program nationally• Develop training resources for future use by
PC services and the RACGPsPhase 6:• Guidelines and Tool generalised and pilot
tested with one non-malignant palliative group
Training & Dissemination (Jan 2009 – Dec 2009)
Support for patients, families and carers in
the community
Increased access to palliative care
medicines in the community
Education, training and support for the
workforce
Research and quality improvement for
palliative care services
PBS listings for palliative care
medications
Community Awareness PEPA
Nurses, GPs, Allied Health,
Rural Palliative Care Program
Knowledge Network & CareSearch
NHMRC Research Program
Advance Care Planning Bereavement
Undergraduate Curriculum
Postgraduate Courses Palliative Care
Outcomes Collaboration
Guidelines for needs-based
assessment & referral
Vocational Education
Guidelines for a Palliative Approach in aged care – RACF and Community
Paediatric Palliative Care
Resource
Carers of Palliative Care patients Information development
framework to support quality improvement
Quality use of medicines
Palliative Care patients living at
home
Local Palliative Care Grants Program
Palliative Care Clinical Studies Collaborative
Palliative Care Medicines Working Group
RURAL AGED CARE PAEDIATRIC INDIGENOUS
Department of Health & Ageing
Funding:• Australian Government Department of
Health & Ageing• The University of Newcastle RCG Grant &
PhD scholarship for A Waller• Effective Healthcare Australia• Cancer Trials NSW supported
AcknowledgementsT he situation of Mount L ofty was found
from hen ce and from som e other cr os s
bearings, to be 34¡ 59' south and 138¡ 42'
eas t. N o land was visible so far to the
nor th as where the trees appeared above
the hor iz on, which showed the coast to
be very low, and our sound ings were
fast d ecreasing.
From noon to six o'clock w e ran thir ty
m iles to the n or thwar d, skirting a sandy
sh or e at the distance of five, an d thence
to eight miles; the dep th w as then 5
fathom s, an d w e dropp ed the anch or upon
a bottom of s and, m ixed w ith pieces of
dead cor al.
Flinders University
The
University of
Newcastle