Palliative Care: A Policy Perspective A whirlwind tour Caroline Chisholm Centre for Health Ethics 3rd October 2013

Palliative Care –A Policy Perspective What is meant by policy? History of palliative care in Australia Role of Commonwealth & jurisdictions Current issues: Senate inquiry into Palliative care Regional Cancer Centres Specialist palliative care and advance care planning advisory services Advance care planning Private Health insurance and palliative care Emerging issues

Catholic Health Australia Catholic Health Australia is the largest non-government provider grouping of health, community and aged care services in Australia, nationally representing Catholic health care sponsors, systems, facilities and related organisations and services. Established to promote and strengthen the organised expression of the Catholic health ministry

Director of Strategic Policy

What is policy? Policy world is the theory and practice of politics and government Public policy – how issues and problems come to be defined and constructed and how they are placed on the political and policy agendas. Studying public policy tells us how and why and to what effect government pursue particular courses of action AND inaction

Public Policy

History of Palliative Care in Australia

History of palliative care in Australia Over past twenty years in Australia Palliative care has moved from informal networks that were sporadically funded to fully funded and recognised. In this time there has been increase in terms of knowledge, improvements in symptom control, understanding the physical, emotional and social journeys of dying people

History of palliative care in Australia In UK by the 1980s, there were 100 new hospices came into being during that decade - most of these were in the voluntary and charitable sector. In Australia in 1988 Professor Ian Maddocks was made the Foundation Professor of Palliative Care at Flinders University, the first such post in the world.

History of palliative care in Australia

New government New government New ministers Sport will move to the Department of Health New department will be known as ‘Health’. Responsibility for Ageing will move to the new Department of Social Services

Commonwealth through the National Palliative Care Program: Through use of funding Through agreements with states and territories Through consideration of issues by the Palliative Care Intergovernmental Forum Input from stakeholders What palliative care is Who receives it Where services are provided Who provides it

National Palliative Care Strategy The National Palliative Care Strategy 2010 – Supporting Australians to Live Well at the End of Life (the Strategy) represents the combined commitments of the Australian, state and territory governments, palliative care service providers and community-based organisations. It guides the development and implementation of palliative care policies, strategies and services across Australia.

National Palliative Care Strategy

Palliative Care Intergovernmental Forum Have developed four nationally agreed performance indicators These high-level performance indicators were agreed by the Palliative Care Intergovernmental Forum (PCIF) in 2003 and are designed to assist in the evaluation of progress against the objectives of the National Palliative Care Strategy, in relation to the planning and delivery of palliative care services.

Palliative Care Data Working Group

National Palliative Care Program - sources of funding Palliative Care in the Community – to improve the standard of palliative care in the community; Palliative Care National - $14 million over four years; and Strengthening Palliative Care Services (Local Palliative Care Grants) –to help health-related services provide better support to people needing palliative care, and their families.

National Palliative Care Program - sources of funding In addition, the Australian Government provided $500 million to States and Territories for the enhancement of sub-acute care services (including palliative care) under the Council of Australian Governments (COAG) significant National Partnership Agreement on Hospital and Health Workforce Reform – this expired June 2013.

National Palliative Care Program Offers support in four broad areas: 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; and research and quality improvement for palliative care services.

1. Support for patients, families and carers in the community grants to local groups, health and aged care providers and church and charitable organisations to support patients and their families receiving palliative care. Eg: Local Palliative Care Grants Program , Rural Palliative Care Project , Respite care, Carer information brochures , Community Attitudes Towards Palliative Care, Bereavement - literature review on complicated grief , Paediatric Palliative Care

2. Increased access to palliative care medicines in the community the Palliative Care Clinical Studies Collaborative (PACCSC) manages multi-site clinical drug trials in order to gather the scientific evidence required to register palliative care medicines on the Australian Register of Therapeutic Goods and possible listings on the PBS.

3. Education, training and support for the workforce Program of Experience in the Palliative Approach (PEPA)- a work placement training program for health professionals in a specialist palliative care service of their choice

4. Research and quality improvement for palliative care services Australian Palliative Care Outcomes Collaboration (PCOC) supports services to consistently compare and measure the quality of their outcomes, and through this ensure continued quality improvement. The consortium is divided into the following four zones: Centre for Health Service Development, University of Wollongong (PCOC Central) Institute of Health and Biomedical Innovation, Queensland University of Technology (PCOC North) Western Australian Centre for Cancer and Palliative Care, Curtin University of Technology (PCOC West) Department of Palliative and Supportive Services, Flinders University (PCOC South)

4. Research and quality improvement for palliative care services PCOC provides a national network for palliative care services to assist with the collection of information and reporting outcomes. PCOC supports services to consistently compare and measure the quality of their output in order to facilitate a process of continuous service improvement. This is achieved through: education, training and support to services in the use of data to improve service quality, including information technology training, establishment or modification; collaborating with participating services on analysis and data, including the development of data subsets that will be the basis of benchmarking; and a program of continuous improvement.

4. Research and quality improvement for palliative care services Palliative Care National Standards Assessment Program The NSAP enables specialist palliative care services to undertake consistent self-assessment against the national Standards for providing quality palliative care for all Australians. The standards are aimed at enhancing workforce skills, improving coordination across the continuum of care and developing and implementing best practice.

4. Research and quality improvement for palliative care services The Palliative Care Research Program, managed by the NHMRC, aims to improve the quality of palliative care, inform policy development, improve clinical practice and develop researcher capacity, by funding priority driven research grants, training awards and research development grants. The Palliative Care Knowledge Network (CareSearch) is a web-based one stop shop of information and practical resources for clinicians, other health care professionals providing palliative care, researchers, patients and carers.

4. Research and quality improvement for palliative care services Australian Institute of Health and Welfare (AIHW) involved AIHW has also released its report into the development and trial of community-based client data collection, to ensure the use of nationally agreed definitions and mechanisms in collecting and measuring palliative care information.

National Performance indicators The proportion of administrative health regions that have a written plan for palliative care which incorporates palliative care elements. The proportion of palliative care agencies, within their setting of care, that routinely undertake or undergo formal assessment against the Palliative Care Australia Standards.

National Performance Indicators 3. The proportion of palliative care agencies, within their setting of care, that actively collect feedback from clients and staff (within the workforce) relating to services and service delivery. 4. The proportion of palliative care agencies, within their setting of care, that have formal working partnerships with other service provider(s) or organisation(s).

Performance indicators -results

Role of Commonwealth & jurisdictions

Senate Inquiry into Palliative Care in Australia Reported 10th October 2012. TOR: the factors influencing access to and choice of appropriate palliative care that meets the needs of the population, the funding arrangements for palliative care provision, including the manner in which sub-acute funding is provided and spent; the efficient use of palliative, health and aged care resources; the effectiveness of a range of palliative care arrangements, including hospital care, residential or community care and aged care facilities; the composition of the palliative care workforce;  the adequacy of standards that apply to the provision of palliative care and the application of the Standards for Providing advance care planning;  the availability and funding of research, information and data about palliative care needs in Australia.

Senate Inquiry into Palliative Care in Australia 38 recommendations Normal time frame for government response 3 – 6 months Commonwealth currently re-writing their response for the new government, few months away. Commonwealth has been challenged in writing a response to such a sizeable report

Regional Cancer Centres Australia-wide network of 26 regional cancer centres and associated accommodation facilities $556 million was committed in the 2009-10 Budget to establish a network of best practice regional cancer centres and associated accommodation facilities The aim of the Regional Cancer Centres initiative is to help improve access and support for cancer patients in rural, regional and remote Australia, and to help close the gap in cancer outcomes between the city and the country.

Regional Cancer Centres Has not been an absolute requirement that these cancer centres have palliative care embedded as an approach. It is an option for consideration Need to individually check and advocate

Specialist palliative care and advance care planning advisory services As part of the Living Longer Living Better aged care reform package, the Government has invested $19.8 million over five years from 2012-13 to establish specialist palliative care and advance care planning advisory services for aged care providers and GPs caring for clients of aged care services.

Specialist palliative care and advance care planning advisory services Aligns with the National Palliative Care Strategy through the following goals: Goal 2 – to enhance community and professional awareness of the scope of, and benefits of timely and appropriate access to, palliative care services. Goal 3 – appropriate and effective palliative care is available to all Australians based on need. Goal 5 – to build and enhance the capacity of all relevant sectors in health and human services to provide quality palliative care.

Specialist palliative care and advance care planning advisory services Also announced at the same time was investment of $1.9 million over five years to expand the existing Program of Experience in the Palliative Approach to provide palliative care training for staff in residential aged care facilities and Home Care package services.

Specialist palliative care and advance care planning advisory services The objectives of the advisory services are to: provide specialist palliative care and advance care planning advice to aged care providers and GPs caring for recipients of aged care services; improve linkages between aged care services and palliative care services; improve the palliative care skills and advance care planning expertise of aged care service staff and GPs caring for recipients of aged care services; and improve the quality of care for aged care recipients, prevent unnecessary hospital admissions and shorten hospital stays.

Specialist palliative care and advance care planning advisory services Funding is provided for: innovative palliative and advance care planning advisory services that operate in, and provide full coverage of, all states and territories; and the delivery, at a minimum, of these services from Monday to Friday, 09:00 – 17:00 inclusive, in the time zone of the respective state or territory.

Specialist palliative care and advance care planning advisory services The establishment of the services will deliver the following outcomes: the empowerment of GPs and aged care providers with knowledge of palliative care and advance care planning relevant to their situation; the creation of links between aged care and palliative care; and the provision of advice about palliative care, advance care planning and advance care directive resources, processes, legislation and accountabilities in the state or territory in which the aged care provider or GP is located.

Specialist palliative care and advance care planning advisory services Consortium – RPC, PCA, ACSA, LASA, QUT Currently undertaking scoping study to see what support exists ACP support wont be provided as a 24hr hotline Support will also be provided through web based tools Desk top audit looking at linkages between spec pall care & aged care (QUT)

Advance Care Planning From 2013-14, the Government is investing $10 million to enable Advance Care Directives to be stored on the Personally Controlled Electronic Health Record (PCEHR) Australian Government is also providing an additional $800,000 over two years for the evidence-based Respecting Patient Choices advance care planning project. This is aimed at developing nationally consistent advance care planning practice guidelines, expanding advance care planning in general practice and contributing to the development of advance care directives for PCEHRs.

Advance Care Planning Member of PCEHR Advance Care Plan Steering Committee Member of the PCEHR Advance Care Plan Consultation group ACP & PCEHR due March-May release 2014 Concession made that ACP can be uploaded as a PDF

Advance Care Planning & PCEHR

Advance Care Planning

Inadequacy of private health insurance to cover palliative care Has long been an issue recognised by the Commonwealth, but not acted upon Private Health Insurance Act 2007 - introduce innovative service delivery of treatment and services –traditionally delivered in hospital –to holders of private health insurance outside the hospital setting. Broader Health Cover

Inadequacy of private health insurance to cover palliative care Private health insurance to provide coverage for home based community palliative care: Maximise choice for consumers, increase demand for home based services Decrease pressure on hospitals and hospices Offer opportunity & incentives for private practice (medical, allied health)

Inadequacy of private health insurance to cover palliative care Most funding models do not recognise the role of Specialist Palliative Care services in supporting primary care services.

Inadequacy of private health insurance to cover palliative care 9mths ago AHMAC tasked the PCIF to write a business case for the budget that investigates the issue of PHI and palliative care. Was not taken up

Emerging issues What burning issues do you have? What hasn’t been mentioned today?