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Review of Koori Needs for
Community Based Palliative Care within the
Grampians Region
Presenter Anne Hayes
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INTRODUCTION
Funding of this research project was obtained through Department of Health in 2001, regional allocation one off grant.Grampians Regional Palliative Care Service submitted two proposals and were successful with both.
This report highlights the process by which we looked at Koori Needs for Palliative Care within the Grampians Region.
The idea arose from the simple (and obvious) question, “Why don’t more members of the Koori population use our service?”
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Acknowledgements
CONSULTANTS - Graham Atkinson
(Yurunga Enterprises)- Stephen Kerr
(Stephen Kerr & Associates)
STEERING COMMITTEE
Miss Wendy Lewis WHCG (chairperson)Mr Kim Galpin Koori Liaison, WHCGMs Estelle French DHSMs Nola Illin Board Member Goolum GoolumMs Alva Taylor Health Worker Goolum GoolumMr Edward Kennedy Board of Management Goolum Goolum (chairperson)Mr Allan Burns Board of Management Goolum Goolum, and BrambukInvited Representative Ballarat Aboriginal Co-operativeDr Natasha Pavlin General Practitioner Goolum Goolum SessionsMs Anne Hayes Wimmera Hospice Care
Goolum Goolum Aboriginal Co-operativeLinda Stewart, Senior Health OfficerKelly Britten, Aboriginal Health WorkerAndrew Brigen, Strengthening Families WorkerAlva Taylor, community memberCraig Cook, CEO Goolum GoolumJoe Edwards, Youth WorkerBrenda Harrison, Substance Misuse workerPeter Kennedy, CEO Werrimal CDEP
Dimboola Hospital Debbie Colquhoun District NurseGwen Carll, Unit ManagerDr John Pickering, GP
Wimmera Community OptionsJenny McInerney, Care ManagerJane McTaggart, Care Manager
Wimmera Hospice Care Jennifer Noonan, Registered NurseHorsham Medical Clinic Dr David Wilson, GP Sessions with Goolum GoolumBudja Budja Aboriginal Co-operative
Carla Taylor, Community Development Worker Stawell CHCTim Charfield, CEO
Ararat Hospital Robyn McIntyre, Palliative Care NurseBallarat Hospice Care Heather Robinson, Co-ordinator
Michelle Veal, Ballarat District Nursing & HealthcareBallarat & District Aboriginal Co-operative
Pauline Smith, Health Co-ordinatorGandara Hospice Dr David Brumley, P/C Medical Consultant for GrampiansDjerriwah Community Health Service
Robyn Tucker, Clinical Nurse Consultant for P/CAboriginal Community Elders Services
Fay Carter, AdministratorPalliative Care Victoria Margaret Box, Executive Director
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TERMS OF REFERENCE
Objectives:
Analyse the numbers of Koori people accessing Palliative Care Services in the past two years.
Work in partnership with Goolum Goolum Aboriginal Co-operative and Ballarat Co-operative establishing links for consultation.
Identify barriers and concerns of Koori community members towards existing community based Palliative Care Services.
Promote awareness of palliative care services to Koori communities.
Promote culturally appropriate service delivery models to meet the needs of Koori community members who are dying.
Improve access to community Palliative Care for Koori community members.
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Expected outcomes:
Increased awareness of the cultural needs of Koori community by existing service providers.
Improved access to community Palliative Care Service by Koori people.
Increased knowledge and understanding of Palliative Care Services by Koori communities.
Identification of opportunities to enhance community based Palliative Care Services for Koori communities if funding is available in the future.
Improved promotional material for Koori communities detailing the philosophy of Palliative Care.
This project can be adopted in other areas.
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Methodology
A systematic data collection was implemented over a period of three months involving consultation with representatives from Koori communities and palliative care service providers within the Grampians Health region.
The project was overseen by a project steering committee comprising of representatives from Koori communities and Health/Palliative Care services provides throughout the region.
Data was gathered from health services and ABS.
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Study Limitations
The evaluation process was time limited.
It was specifically focused on Koori access to services as perceived by service and agency staff.
Though the study located some material from hospital sources, the bulk of the information came from people, informed but subject observation.
The review was not asked to survey or explore the experiences of service users/consumers.
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BackgroundLiterature search revealed there was a limited amount of information available on Indigenous access to services and the problems they encounter.
National Aboriginal Health Strategy 1989
Human Rights & Equal Opportunity Commission 1993
Inquiry into the rights of people with mental illness (the Burdekin Enquiry)
Royal Commission into Aboriginal Deaths in Custody
National Commitment into Improve Outcomes in the delivery of Service to Aboriginal and Torres Strait Islanders.
All highlighted major failings in the provision of service to Indigenous peoples across a wide spectrum of areas, not to mention palliative care and the broader health area.
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The consultants noted there were two other Aboriginal
research programs running in Australia Con-currently.
National Indigenous Palliative Care Guidelines Project, Wodonga involving Mungabareena.
Aboriginal Corporation, Wodonga Institute of TAFE and Mercy Health Services.
National Indigenous Palliative Care Needs Study by Kate Sullivan and Associates.
Both funded by Commonwealth Department of Health and Aging.
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Policy & Service Development
In 1995 funding was granted by Department of Human Services for a study entitled “The Palliative Care Needs of Victorian Aboriginal People”.
This study was commenced by Leah Andrews and completed by Penny Wagstaff. 1996
In 1996 DHS sponsored a state-wide conference on palliative care. This included representatives from Aboriginal Health Services, mainstream palliative care services and senior departmental staff.
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Research Findings(as listed in Wagstaffs Report 1996)
Fewer statistics are available for Victorian Kooris than aboriginals in other states.
Koori people in Victoria report the highest rates of:-recent illness
-specific long term illness-smokers
Koori are dying at 3 to 5 times more than that of other Victorians.
Koori have life expectancy of 15 to 20 years less than other Victorians.
The majority of deaths occur in mid to adult years (20 to 55).
Koori experience late diagnosis and poor management of preventable disease.
Cancer is responsible for 10% of Koori deaths compared to 30% of non Koori.
If palliative care were extended to HIV, and end stage cardiovascular, respirator renal and neurological (ABI) disease, it would be more appropriate to Koori population.
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Wagstaffs Studyidentified further perceived
difficulties in meetingpalliative care needs of
Koori. Mainstream ignorance of Koori culture.
Koori mistrust of mainstream service
Prejudice on both sides
Mobility of Koori population
Isolation of some communities (Koori)
Difficulties in communication
Storage of narcotics in family homes
Flexibility in visiting
Need for Koori workers with Palliative Care training
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Issues For Aboriginal Population
Aboriginal people have a caring attitude and feel responsible to visit relatives when in hospital.
People suffering life-threatening circumstances relied on family visits to make it bearable for them to stay in hospital.
Remote living (and all that is associated with service provision).
End stage is a period when aboriginal people need most support and social contact.
Aboriginal people need aboriginal people to provide their health care (otherwise they often experience cultural isolation.
Care delivery flexibility.
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Current Service Description
GRAMPIANS HEALTH REGION
POPULATION
Indigenous population profile compared to total population.
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Table showing Indigenous access to Grampians
Regional Palliative Care Services 01/07/01 to
30/12/02
Access to GRPC Services 01 02
.xls
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Koori Health Services In The GrampiansGoolum Goolum Aboriginal Co-operative• Health Workers (including Maternal Child Health Worker)• Strengthening Families Worker• Youth Worker• Child Placement and Support Worker
Indigenous population by DHS Regions, 2001 estimates
9%9%
11%
6%
11%15%
15%
15%
9%
Barwon SW Eastern Metro Gippsland
Grampians Hume Loddon-Mallee
Northern Metro Southern Metro Western Metro
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Koori Service Description
Grampians Health Region
KOORI HEALTH SERVICES in GRAMPIANS
Halls Gap (Budja Budja Aboriginal Corporation)relatively new service with one community development officer employed through Stawell CHC.
Provides a number of cultural and environmental servicesWorking on providing more in the future.
GOOLUM GOOLUM ABORIGINAL CO-OPERATIVE (Horsham)
Health Workers Strengthening
Families Worker Youth Worker Child Placement &
Support Worker Medical services is
provided by referral to doctors across the street.
BALLARAT & DISTRICT ABORIGINAL CO-OPERATIVE (BADAC)
Mental Health Women’s Health Youth Workers Maternal & Child Health
Worker HACC services Health Promotion.
ABORIGINAL HOSPITAL LIAISON OFFICERS (AHLO)
of 20 in the state1 = Horsham, working well with hospital and co-operative
1 = Ballarat, working well with hospital but not so well with co-operative.
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Palliative Care Services
in Grampians Health Region
Ballarat Hospice Care Inc.
Wimmera Hospice Care (within Wimmera Health Care Group)
Djerriwarrah Palliative Care Service (within Djerriwarrah Health Services)
Grampians/Pyrenees Palliative Care Service (within Ararat Health Service)
Regional Palliative Care TeamThese services provide:
Nursing care/consultancy for in home, residential care and hospital based facilities.
Equipment loan Service co-ordination/brokerage Support services/volunteer service Bereavement follow-up Education and training Access to inpatient palliative care beds Medical consultancy as required.
Gandara Inpatient Unit (ten beds)
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CONSULTATIONSUnder the direction of the Steering Committee,
consultations were conducted with all care providers between late January 2003 and February 2003.
FINDINGS and RECOMMENDATIONS
Awareness of Cultural Needs
The report found that cultural awareness of local community need varied.
Some staff had actively informed themselves.
Mentioned frequently throughout the consultations was the issue of local community divisions and factional disputes in the Koori community.
All agreed there was room for more educational programs in this area such as regular cross cultural awareness training for mainstream staff.
All agreed these programs would need to include Aboriginal Health Workers.
Low numbers of Koori presentation limited mainstream works exposure to Koori population.
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Findings and Recommendations cont’d
Recommendation:
1. That a co-ordinated cultural awareness training program for service staff is essential for a sustainable Koori palliative care strategy.
2. That training take into account the relevance to Koori people of:• family• community• land (country)• spiritual belief• education• grief and loss• socio-economic disadvantage • mortality and morbidity• history for Koori service workers.
3. The current steering committee be responsible for developing managing and evaluating a regional cultural awareness strategy which is inclusive of mainstream training and professional development.
4. Funds be accessed from key funding agencies such as Department Human Services (DHS) (Commonwealth) Office of Aboriginal and Torres Strait Health (OATSIH) and Commonwealth Department of Health and Aged Care to employ a ‘dedicated position’ to assist the steering committee in the implementation of these measures.
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Findings and Recommendations cont’d
ACCESSCurrent situation:Bacchus Marsh and Ararat have very little demandHorsham has potentially greater demand but has recorded few deaths in recent years.Ballarat has the largest demand but no evidence of access to palliative care services.
The consultants made it clear that in their opinion, there was no significant evidence of unmet demand but there was potential.
They acknowledged the small size of indigenous population.
Also the ‘traditional’ target group for palliation being cancer has further restricted demand from the indigenous community.
Appropriateness of modelHolistic model of care was seen as appropriate to Koori community.Flexibility of service delivery within that model was applauded.Family involvement in careBrokerage model was seen as having potential to involve Koori health services
Model also provided cover to the more remote areas of the region.Consultants felt the model would need to change to become moreinclusive, for example; changes in referral patterns to meet the needs of patients with;
-cardiovascular disease-Renal disease-ABI-Diabetes.
Grief Counselling
This was seen as an opportunity and potentially very valuable free service to the Indigenous community.
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Findings and Recommendations cont’d
Recommendations:
1. That each local service provider identify a worker to liaise with Koori Health Service and aboriginal hospital liaison officer.
2. That a memorandum of understanding be adopted by each service provider within local Koori Health Service.
3. That evidence of this be included as part of service funding and service agreements.
4. That aboriginal liaison officers assist with referrals to palliative care services.
5. Grief counselling services be offered to the Koori community via (and in partnership with) Koori Health Service.
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Findings and Recommendations cont’d
UNDERSTANDING of
PALLIATIVE CARE SERVICES
Koori population have many and a varied understanding of service, ie. nursing home, cancer, death.
They also report illness much later and are sicker and usually die quicker and much younger than mainstream users.
They are likely to:
avoid approaching mainstream service due to past negative experience.
be unfamiliar with services promoted by written word only due to poor literacy skills.
rely on ‘word of mouth’ for information. fear the prospect of isolation, disconnection from
family, particularly if they might die.
Recommendations:1. Koori Health Services at local level need education
2. Koori staff Aboriginal Liaison Officer, Health Workers need education
3. Development of Koori public awareness plan for palliative care.
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Findings and Recommendations cont’d
SERVICE DELIVERY
Developing expertise in Indigenous palliative care.
This study has identified a gap in service provision in that no expertise in indigenous palliative care has been formally recognised or resourced.
Aboriginal Community Elders Service (ACES) as a major provider of residential and aged care packages is a provider of palliative care service in itself.
The consultants felt this service ought to be supported as a specialist indigenous broker/adviser to all palliative care in the state.
Recommendations:1. Monitor indigenous access to palliative care
service on regional basis.
2. ACES receive funding to provide indigenous brokerage/advisor service to palliative care service providers in the state.
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Findings and Recommendations cont’d
PROMOTIONAL MATERIAL
A key aspect of the material is the need to specify tangible benefits of the service to the Koori community in a culturally and traditionally acceptable manner.
Recommendations:Koori Health Services and Palliative Care providers develop promotional strategies which.
1. Promote palliative care material in Koori communities.
2. Recognises literacy and numeracy skills problem in the Koori community
3. Includes flexibility for information sessions to be one on one or group based.
4. Presents information in a user friendly easy to read, including posters, brochures etc.
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Findings and Recommendations cont’d
Service Model Adaptation
The review concluded that community based palliative care services are uniquely placed to provide sensitive and relevant services to Koori people.
Among the model’s strengths is its focus on empowering those living with terminal illness.
Equally important is the model’s attention to holistic issues such as the cultural, social, emotional and spiritual as well as the physical needs of the patient, which closely matches some of the key principles of Koori Health Services.
It is therefore critical that the mainstream sector consider developing effective working partnerships with local Koori services, including protocols for working with Koori communities.
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Recommendations:
That key guidelines be developed promoting a service model.
1. recognise that Koori Health Services in Horsham, Halls Gap and Ballarat have differing funding levels which will impact on their capacity to address palliative care needs.
2. Education and training programs for nursing, medical and allied health are an intragyral part of service model.
3. Culturally sensitive service needs be delivered when needed, not when it suits the organisation or the worker.
4. Local palliative care services need to have cross cultural training and form collaborative partnerships with Koori Health Services.
5. Koori workers need training in symptom management, grief and bereavement.
Findings and Recommendations cont’d
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SUMMARY
The consultants proposed a three year action plan, utilising existing service delivery models within the Grampians Regional Health Service.
They recommend this plan be overseen and evaluated by the steering committee.
Formal agreements be developed between Koori Health Service and mainstream health providers on all matters pertaining to palliative care.
Education needs to be a ‘two way’ experience for health workers from both communities.
They recommend government funding be provided to fund a position to assist the steering committee to implement this action plan.
Consultants felt this model of service delivery could be relevant to other areas.
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The End
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Table showing Indigenous population by Age by LGA
0
20
40
60
80
100
120
140
Ararat Ballarat Golden Point Hepburn Hindmarsh Horsham
Moorabool NorthernGrampians
Pyrenees West Wimmera Yarriambiack
