Tonight I wish to speak on a subject that many people feel uncomfortable talking about—that is, death or, more to the point, caring for people who we know are going to die sooner rather than later. After all, we are all going to die sometime. It is an inescapable fact of living, an unalterable facet of life and a normal process. For those with an active, progressive and far-advanced disease, with little or no prospect of cure, palliative care is there to ensure the best possible quality of life for the individual patient, their carers and their family.
What palliative care is and how it works is often not well understood in the community. A 2006 survey about community attitudes towards palliative care issues conducted by Campbell Research and Consulting for the palliative care section of the Department of Health and Ageing found that, overall, Australians had a low to moderate knowledge and understanding of palliative care. Around 16 per cent of Australians had never heard of palliative care, while 13 per cent had heard the phrase but did not know what it meant. A further 33 per cent knew a little about palliative care, while just 38 per cent knew what palliative care was and could explain it to another person. Yet around 46 per cent of Australians have had someone close to them, such as a friend or family member, who required or had used palliative care services.
National Palliative Care Week was held between 22 and 28 May. It is one of the biggest events in Palliative Care Australia’s calendar and it aims to increase understanding of palliative care amongst the community. The theme of this year’s National Palliative Care Week was: ‘Let’s chat about dying’. The aim was to promote the message that it is okay to talk about dying. By doing so, we can provide the opportunity to maximise the experiences still left to us while minimising the suffering of, as well as making the experience easier for, our loved ones.
Palliative care is composed of a number of elements. It affirms life and treats dying as a normal process. It neither hastens nor postpones death. It provides relief from pain and other distressing symptoms. It integrates the physical, psychological, social, emotional and spiritual aspects of care with coordinated assessment and management of each person’s individual needs. It offers a support system to help people live as actively as possible until death. Very importantly, it offers a support system to help the family cope during the person’s illness and in their bereavement. Families provide much of the care for people who are dying, and practical and emotional support for them in this role is critical.
Palliative care is not just for the elderly. It is available for anyone who is dying, no matter what their age. It is dependent not on having a specific medical condition but on the needs of the patient. Palliative care can be accessed by referral from your doctor or the palliative care services at your nearest hospital or hospice. It can be provided in a variety of places: in the home or in community based settings like nursing homes, palliative care units and hospitals. This flexibility is a necessity, as people who are dying need to be able to move freely between these places in response to their medical care and support needs. Each individual requires and is provided individually tailored care. Factors which influence their care may include geography, the services in an area and the needs and desires of the person, their family members and their friends. In general, palliative care is best provided in close proximity to the person’s own local environment and community, for obvious reasons.
Palliative care is team based in nature. It involves the coordination of the skills disciplines of many different service providers. Those involved may include specialist medical, nursing and allied health staff that have undertaken further study in palliative care or have significant experience in the area. It might also include more generalist medical, nursing and allied health staff working in other areas of the health system who have a professional involvement with people requiring palliative care. Finally, palliative care also includes support services, including assistance with the processes of daily living, enhancing quality of life and/or providing emotional and spiritual support.
The National Palliative Care Strategy is the policy document that the Australian government and state and territory governments use to guide palliative care policy development and service delivery across Australia. The strategy was endorsed by the Australian Health Ministers Conference in November 2010. The strategy focuses on four key areas: awareness and understanding, appropriateness and effectiveness, leadership and governance and capacity and capability. More specifically, these areas aim to: significantly improve the appreciation of dying and death as a normal part of the life continuum; enhance community and professional awareness of the scope of and benefits of timely and appropriate access to palliative care services; ensure that appropriate and effective palliative care is available to all Australiansbased on need; support the collaborative, proactive, effective governance of national palliative care strategies, resources and approaches; and build and enhance the capacity of all relevant sectors in health and human services to provide quality palliative care.
Palliative Care Australia is the peak national organisation representing the interests and aspirations of all who share the ideal of quality care at the end of life. Palliative Care Australia’s membership comprises the eight state and territory palliative care organisations and the Australian and New Zealand Society of Palliative Medicine. These organisations created and share the vision, mission and aims of Palliative Care Australia and operate through a federated governance structure.
During Palliative Care Week, the Minister for Mental Health and Ageing, Mark Butler, announced that the government will provide Palliative Care Australia with up to $3 million in funding to purchase new, special ised palliative care equipment. This funding will be used by Palliative Care Australia to operate an equipment loans scheme, which will provide palliative care patients with access to specialised equipment when being cared for in a home setting. This will signifi cantly increase community access to new equipment such as electronic beds and pressure care mattresses and will enable pal liative care patients to remain in their home, close to their family and loved ones. This funding could provide an additional 200 electronic beds and pressure care mattresses, 2,000 wheelchairs or 300 hoists and slings. Access to such equipment should help ease the suffering and increase the comfort of many, many Australians.
In addition, a further $5.6 million in grants of up to $150,000 each will be provided to 81 community groups, healthcare and aged-care providers and charitable organisations under round 6 of the Local Palliative Care Grants Program. Tandara Lodge in the town of Sheffield in my home state of Tasmania has recently been awarded a local palliative care grant of $34,580. Tandara Lodge has been providing a high standard of care and quality of life for the Kentish community since the 1970s, and I am sure this grant will help improve the quality of care at this facility.
The Local Palliative Care Grants Program is one component of the government’s commitment to improve palliative care support and services for patients, their families and carers through the National Palliative Care Program. The program aims to improve access to, a nd quality of, pallia tive care. The government currently provides over $23 million to the program, which offers support in four broad areas: 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. Other initiatives under the program include Palliative Care in the Community, which aims to improve the standard of palliative care in the community, and palliative care national, which is funded at $14 million over four years. In addition, the Australian government has provided $500 million to states and territories for the enhancement of subacute care services, including palliative care. This comes under the Council of Australian Governments significant National Partnership Agreement on Hospital and Health Workforce Reform.
This government is committed to improving the public’s understanding of palliative care and of the palliative care services available, as well as providing the support and the resources that the palliative care sector needs. Through improved funding and better community understanding, it is expected that an improvement in the quality of care for those in palliative care will help family, friends and carers cope with what is an incredibly distressing process.