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