Palliative care improvements needed in Australia

While Australian expertise in palliative care to ease the suffering of dying people has developed rapidly over the past 20 years, there is still a long way to go, writes Professor Margaret O'Connor, who holds the inaugural Vivian Bullwinkel chair in palliative care nursing at Monash.

In Australia there is much work to be undertaken in palliative care. There are still people in our community who are not dying well and who, for many and varied reasons, are not accessing the best care they could.

For example, people with diseases other than cancer, such as end-stage heart disease or motor neurone disease, still do not get easy referral or equitable access to palliative care services. While the reasons for this are unclear, it is thought that an uncertain prognosis and the demands on service providers for high levels of care might be some of the issues. Surprisingly too, given the amount of information available about palliative care and its demonstrated benefits for terminally ill people and their carers, lack of timely referral by health professionals also remains an issue. This may be because of ignorance, or health professionals' unwillingness to take a multi-disciplinary view of the holistic needs of the terminally ill person and their family.

Our society is at once abhorred and fascinated by death; thus death and dying issues are still not the stuff of easy conversation, even in some health care circles. Because of this there are still people who, unaware of the sorts of support that can be offered through palliative care services, may be driven to end their own life, viewing this as the only way to relieve their suffering.

Although the care of dying people has always been seen to be different to the care provided in acute settings (as evidenced by the number of well-established hospices throughout Australia), its more recent development during the 1970s and 1980s as a specialty area of health care was in response to a perceived need for more active intervention in assisting the dying person and their family in this final phase of life.

So, using a holistic model of care, physical symptom management remains a paramount skill for the clinical palliative care professional. But because the psychological, spiritual and social aspects of care are important, other health professionals who work on palliative care teams include social workers, psychologists, pastoral workers and physical therapists. In many settings, volunteers provide a vital role by reminding heath care professionals that dying is a human event. Dying does not always require health care intervention, but it will always need human support -- someone to sit with people and support them in their final journey.

As in all areas of health care, funding levels and models are of ongoing concern to palliative care providers. While services wish to respond to needs in a timely and effective manner, there is a tension between the levels of need and what can be provided, under current funding arrangements and with current models of care.

An increasing community awareness of services, the broadening of palliative care expertise to encompass care for more than cancer, and the ageing population all cause palliative care providers to be continually reviewing models and practices of care. While not all dying people will require palliative care, the expertise ought to be readily available to those who do require such care. So flexible models and those that encourage the generous sharing of expertise are two aspects of how palliative care will face the challenges of future demand.

There has been a rapid development of palliative care expertise at all levels in Australia over the past 20 years. Australia is well placed to meet the future service delivery challenges, from internationally respected research programs and significant work on service delivery models.

In relation to research, issues about how we can best deliver palliative care are indicative of an evolving discipline and of a discipline that can adapt to changing social times and individual needs. There has been much change in the short life of palliative care, particularly in the way services have become more part of mainstream health services and palliative care knowledge has become more widely disseminated.

But there has been little analysis on whether these changes have improved care for the dying. For example, does the service system work well when a person needs to move from home to the acute hospital or vice versa? Is there enough support for a person receiving care at home and how is this known? There are increasingly relevant areas of research about the applicability of palliative care for those people with illnesses other than cancer, for people dying in aged care facilities, and in addressing some of the ethical issues that arise in end of life care.

The discipline of palliative care is coming of age -- establishing its place in health care, creating firm linkages with other services that a terminally ill person might need, becoming better known in the general community and assuming an increasingly public role in advocating for the needs of dying people. Being a relatively new area means the pioneering excitement and challenge are not so far beneath the surface of hard work for those committed to seeing that all Australians have access to the best care at the end of life.