Despite Australia’s high international ranking in the general provision of end of life care, access to palliative care in our nation has been described as a lottery. One’s chances in that lottery are determined by location, diagnosis, the relevant experience and training of one’s health professional, cultural background and age.
It would be good to take some of the uncertainty out of end of life circumstances – including in areas where settlement is sparse and specialised palliative care support thin on the ground. In these areas, providing support and pain relief for people with terminal conditions is a particular logistical and workforce challenge.
Palliative Care Australia (PCA) is leading work to reach a position where everyone can look forward to having choice and control at the end of their lives, including where they want to be cared for and by whom. Death should not necessarily be in a hospital or away from home. Approaches to dying should recognise that many people want their final weeks and hours to be in familiar surroundings, in the company of people who care for them - and without pain.
For country people this can pose particular challenges. Sometimes, terminal illness will require specialised hospital care that reduces choice about location. Transfer to a hospice for palliative care may mean the person has to be a long way from home at the end of life.
It is troubling that the finance available for community support for end of life care varies markedly between jurisdictions. Some health and aged care professionals, Indigenous health workers and community service staff have little or no training in appropriate end of life care. Carers and volunteers in rural and remote areas cannot get the same level of support as people in larger centres where a palliative care team is more easily accessible.
Rural health and aged care workers, volunteers, family members and carers should have access to training, support and professional assistance. Relevant programs need to be flexible enough to meet rural needs such as the additional costs of travel, backfill to attend courses in the city, or even to take time out of caring or work responsibilities. The provision of targeted information will assist with sourcing of aids to end of life care and overcoming other particular rural challenges.
A focus on better end of life care is related to the rebalancing of the aged care system, to give greater emphasis to care in their own home for the elderly and those with terminal illness. The recent Government announcements of plans to improve palliative care for older people at home or in residential care from 1 July 2012 are welcome and important.
Other improvements will come from greater support for Patients’ Assisted Travel Schemes and further developments in telehealth services. The latter will link people in more remote areas with specialist palliative care services and advice, and keep family members in touch.
More and better data on rural aspects of palliative care is needed, suggesting that it is a fruitful area for research. One relatively straightforward improvement would be to have a single national instrument for advance care planning, integrated with the eHealth record, and with harmonisation of its practical and legal status across jurisdictions.
Palliative care can and should improve end of life outcomes for Aboriginal and Torres Strait Islander people, and services for those of them who live in rural and remote areas must meet both cultural safety and particular rural/remote imperatives.
Palliative Care Week is a chance to focus on what Palliative Care Australia terms ‘the social determinants of death’ – the characteristics that determine the chances of dying with maximum choice and with loved ones and carers, supported by expert professionals providing pain and symptom control.
Lesley Barclay - Chair: 0412 282 801
Gordon Gregory - Executive Director: 02 6285 4660