Why the Palliative Care Service Development Guidelines are important and what were the biggest changes from the previous guidelines
A blog post written by Jane Fischer, President of Palliative Care Australia, Calvary Health Care Bethlehem
In 2017 Palliative Care Australia undertook a review and update of the reference documents A Guide to Palliative Care Service Development: A population based approach and Palliative Care Service Provision in Australia: A planning guide. Together these key reference documents have provided a framework for the ongoing development of palliative care policy within the health care system for the last fifteen years.
PCA has undertaken a review and released a new service development document, Palliative Care Australia’s 2018 Service Development Guidelines (340kb pdf) with an accompanying Background Report (741kb pdf). The Guidelines are intended to inform and influence governments in making decisions on the development of palliative care services, influence private health insurers about which services to fund, and for public and private sector providers of palliative care to organise and deliver services.
The Guidelines were developed through the following processes:
- A literature review, together with analysis of data on the demand for, and supply of, palliative care services (this piece of work formed the Background Report);
- Consultation with the palliative care sector and other stakeholders with an interest in palliative care;
- Review and consensus decision-making through a committee including Palliative Care Australia Board members, jurisdictional representatives and other experts.
The Guidelines communicate the expectations of PCA for the range of palliative care services that should be available to people living with a life-limiting illness, their families and carers; and the workforce and system capabilities required to deliver an effective network of palliative care services using a population-based and geographic approach to service planning. The Background Report underpins the guidelines with its review of the policy context, relevant evidence and analysis.
The guideline document comprises five chapters. The first chapter looks at a person-centred approach to palliative care. Current patterns of death in Australia and an overview of illness trajectories are outlined. It also examines the need for a public health approach to palliative care to support broader public debate about dying, death, loss and grief, including policies to encourage uptake of advance care planning.
The concept of palliative care is explained in the second chapter identifying the difference between specialist palliative care and palliative care provided by other health professionals and the value of the early introduction of palliative care. The third chapter looks at palliative care service evidence and the demand for, and utilisation of, palliative care services. It draws on Australian and international estimates of population-based need for palliative care and presents a conceptual model of level of need for palliative care, recognising the value in aligning workforce capability with people’s diverse levels of need for palliative care.
Chapter 4 presents a systems framework for the palliative care service system. It identifies key elements of a person-centred and effective continuum of palliative care services for people living with a life-limiting illness, their families and carers. These key elements are referral and assessment services; settings for the provision of palliative care; a team-based approach to service provision; and continuity and coordination of care. For families and carers, the key elements considered are: information, education and support; after-hours access; equipment and medical supplies; respite; and bereavement support.
Finally, chapter 5 examines the workforce and system capabilities required to deliver high-quality palliative care services. An updated workforce capability framework is developed that includes greater specification of the scope of services that should be provided for each level of palliative care service. A regional approach to planning of palliative care services is outlined, together with a framework to ensure effective networking between and across palliative care services and other health services. Systems capabilities such as professional education and training; workforce support; and research, evaluation and benchmarking are noted.
A significant area of work undertaken by the working group was the definitional work. In alignment with the WHO definition, Palliative Care Australia defines palliative care in the contemporary Australian context as being:
Person and family-centred care provided for a person with an active, progressive, advanced disease, who has little or no prospect of cure and who is expected to die, and for whom the primary treatment goal is to optimise the quality of life.
Palliative Care Australia considers that the following elements are integral to understanding this definition of palliative care:
- Palliative care should be strongly responsive to the needs, preferences and values of people, their families and carers. A person and family-centred approach to palliative care is based on effective communication, shared decision-making and personal autonomy.
- Palliative care should be available to all people living with an active, progressive, advanced disease, regardless of the diagnosis.
- Palliative care affirms life while recognising that dying is an inevitable part of life. This means that palliative care is provided during the time that the person is living with a life-limiting illness, but it is not directed at either bringing forward or delaying death
Finally , the guidelines highlight that all health professionals who provide care to people living with a life-limiting illness, their families and carers should have minimum core competencies in the provision of palliative care. People with more complex needs should be able to access care provided by specialist palliative care services comprising multidisciplinary teams with specialised skills, competencies, experience and training in palliative care. Palliative Care Australia refers to the care that is provided by specialist palliative care services as ‘specialist palliative care’. Palliative Care Australia refers to care that is provided by other health professionals, including general practitioners, as ‘palliative care’ (although it is also sometimes known as ‘generalist palliative care’).
Palliative Care Australia’s 2018 Service Development Guidelines are intended to complement, but not duplicate, other key resource documents for the palliative care sector including:
Palliative Care Australia hopes that State and Territory Governments who have responsibility for planning and organising the provision of publicly funded palliative care services; private health insurers who pay for palliative care services for privately insured patients, with these services being delivered by private or public providers; directors of specialist palliative care services; and other health professionals involved in providing palliative care in all service settings will all utilise both of these key documents to assist them in planning for services and workforce requirements into the future to ensure the delivery of a palliative care service system that will meet the needs of patients and their families.
A guest blog post by Jane Fischer, President of Palliative Care Australia, Calvary Health Care Bethlehem