End of Life Alliance

In June 2008, Palliative Care Queensland (PCQ) hosted the ‘A Matter of Life and Death’ forum. This was one of a series of national forums sponsored by Palliative Care Australia (PCA) as part of National Palliative Care Awareness Week 2008. The aim of each forum was to provide an opportunity for both members of the general public and health professionals to discuss and debate current issues within the palliative care sector. The Queensland forum culminated in a clear mandate for PCQ to steer the creation and development of a palliative care ’summit’, bringing together the most senior representatives from Queensland Health and non-government providers of palliative and end-of-life care services in Queensland. 

To this end, on 27th May 2009 PCQ organised and hosted the inaugural meeting of the Queensland End of Life Alliance (EOLA) at the Riverside Hotel in Hamilton. Representatives were invited from a broad range of stakeholder services and sectors (both Government and non Government) providing end of life care in Queensland. The meeting was facilitated by Professor Sue Hanson, Director of Quality & Standards at PCA. The EOLA was also attended by a number of staff from the Policy, Planning and Development Department of Queensland Health, including Professor Andrew Wilson, Deputy Director of Policy, Planning & Development. 

The inaugural EOLA meeting was extremely successful. Each representative was given the opportunity to express their three most pressing issues for end of life care in Queensland and a consistent message was the lack of coordination in service planning. Representatives agreed that the EOLA should take a broader focus than service provision or palliative care and that it is an opportunity to discuss, debate and contribute to policy and planning for end of life care in Queensland. 

An important outcome of this meeting was the commitment from Queensland Health to fund a project which will provide recommendations for a model of end of life care delivery in Queensland. PCQ has since secured the funding for a Senior Project Officer until 30th September 2009, when the first draft of the final project report is due. 

The objectives of the project are: 

  • To review end of life care provision in Queensland; 
  • To determine and document current status of end of life care provision in Queensland following extensive consultation with stakeholders, and 
  • To provide recommendations to Queensland Health with regard to a state-wide model for palliative care provision

These objectives will be met by implementing the following actions: 

Review end of life care provision in Queensland 

The EOLA project runs concurrently with a mapping project that is being conducted by Queensland Health’s Policy, Planning and Development Department. The aim of this second project is to map the existing palliative care services in Queensland, a process that will complement the work of the EOLA project. The EOLA project will review the following: 

  • Population trends in Queensland
  • Mortality and morbidity in Queensland
  • Palliative care service provision models in other states and territories in Australia
  • International perspective
  • Funding sources for end of life care 

Determine and document current status of end of life care provision in Queensland 

As this project will seek to consult extensively across Queensland, the methodology includes three major components: 

1.      End of Life Alliance (EOLA): 

The EOLA consists of members drawn from a broad range of service providers, organisations and sectors providing end of life care in Queensland. The role of the EOLA in this project is to provide information, advice and direction to the content. The contribution of the EOLA will be invaluable for this project.

2.      Focus groups: 

Seven health professional focus groups will be conducted across Queensland. Focus groups will comprise service providers and staff working in services that provide palliative or end of life care. The locations for these groups have been chosen on the basis of projected population growth and the principal of equity. The locations are: 

  • Townsville
  • Gold Coast
  • Brisbane Metro x 2
  • Toowoomba
  • Cairns
  • Sunshine Coast

Participation at the groups will be by invitation only, largely due to the time constraints and limited resources of the project. The following government and non-government employed groups will be represented: 

  • Specialist palliative care providers (doctors & nurses)
  • Primary care providers (GP’s and Domiciliary Nursing Services)
  • Residential Aged Care
  • Paediatrics
  • Allied Health

In addition to the focus groups above, a meeting will be held in Brisbane for representatives of other medical specialties that provide end of life care. This will be hosted by Palliative Care Queensland (PCQ) and will be facilitated by Dr Louise Welch, President of PCQ. The specialties represented will be: 

  • Cardiology
  • Respiratory Disease
  • Neurology
  • Geriatrics
  • Cancer
  • Renal Disease

Queensland has a rich and diverse cultural mix and for this reason, it is essential that this project seeks to engage representatives from the various cultural communities. Dr Deborah Prior is a member of the EOLA and has extensive experience of working with Aboriginal and Torres Strait Islander communities throughout Queensland. The project will engage Deborah to canvas the perspective of these communities

An additional focus group will be held in Brisbane for representatives of culturally and linguistically diverse communities. The purpose of this focus group will be specifically to establish current end of life care provision in Queensland from the perspective of diverse cultural groups and to determine areas for improvement.

3.      Surveys:

The final strategy for consultation is to use surveys. There were two online surveys that were accessible via this website. One survey was targeted at the general Queensland public and the second was targeted specifically at people who work in the health care sector. These surveys were voluntary, no identifying data was collected, and the information gained was used for the purposes of this project only. As this survey has been classified as a quality assurance activity, ethics approval is not required.

General Queensland Public Survey:

The purpose of this survey was to engage consumers and members of the Queensland public, and to provide an opportunity for these groups to comment on existing service provision, but also to make recommendations for improving the quality of end of life care in Queensland. The date for completing this survey has past.

Health care professional survey:

The purpose of this survey was to provide an opportunity for health care professionals to contribute to this report and to add to the body of data gained from the focus groups. The date for completing this survey has past.

 Provide recommendations to Queensland Health with regard to a statewide model for end of life care.

Following the processes of review and consultation, it is the role of the EOLA to analyze the data collected, and to draft recommendations for end of life care provision in Queensland. This will include a recommendation for a specific statewide model of care for service delivery. It should be noted that the recommendations will not only focus on palliative care, but upon all care provided to Queenslanders who are dying. The EOLA will therefore seek to ensure both equity of access to quality care at the end of life, and the coordinated, efficient and effective utilization of public resources in doing so.