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WHEN I started working in palliative care nearly 20 years ago, most people thought it was only relevant to cancer patients, and availability of specialist services was patchy at best
The evidence base we used to manage patient symptoms then was also limited.
Today, the place of palliative care in the health system has changed radically.
Continuing developments in the sector and greater acknowledgement that palliative care is everyone’s business has prompted Palliative Care Australia (PCA) to review its Standards for providing quality palliative care for all Australians, and now we are ready for feedback from doctors as part of the palliative care community.
Palliative care was described as “core business for aged care” in the Productivity Commission’s 2011 report Caring for older Australians.
This greater recognition of its benefits means more people with a range of chronic diseases and conditions other than cancer now have access to care. There is also growing recognition of the need to provide better community palliative care services to keep people out of acute hospitals at the end of life.
The PCA’s standards can guide doctors practising in most areas of medicine on how to deliver the best possible care to their patients. For example, the draft standards offer advice on equitable access to care, and the role of quality improvement and community support.
At a practical level, the standards cover the critical elements of assessment and symptom management, as well as specific issues for patients in the terminal phase. The important area of family and carer support is also addressed.
While palliative care today is an integral component of our health care system, there are still some gaps in how it is delivered and it can be a challenging area of practice.
Standards for practice must clearly spell out what we can and should do for people who are dying. For example, one of the biggest issues which prevents people from accessing palliative care is a willingness to talk about death and dying.
In 2013, PCA conducted a survey of people who had recently lost a loved one. It revealed that half of those surveyed had not discussed care preferences with their loved ones and only 15% had a plan for the end of life. Only 27% of people who had died did so in their homes, despite 88% of people wanting this.
Doctors play a central role in encouraging people to talk about dying and palliative care. Having these sorts of discussions helps put a greater focus on palliative care and drive community demand for more and better quality care.
Although advocacy and awareness-raising is one of PCA’s major activities, we need the help of those involved to make change happen. Doctors, particularly GPs, have a prominent role in ensuring people know what palliative care does and how it can help them.
Another unpublished survey by PCA found 96% of 300 GPs agreed that they had an important role to play in supporting people at the end of life and, not surprisingly, in supporting family. They are often the first person families turn to for help in decision making regarding the end stages of life.
Specialists are also often at the centre of decision making about a patient’s care, and provide a great deal of leadership and guidance throughout the dying process.
Discussions about death and dying, along with early referrals to palliative care, can alleviate stress for the dying person and for their loved ones, and create an environment where doctors work together as a team — one of the success factors for palliative care.
This is why PCA wants doctors’ views on the standards, to ensure they reflect what is happening in practice. It is also about highlighting the importance of doctors’ role in the end-of-life process, and how essential the role is in determining the type of death that a person will have and what their the loved ones will experience.
The consultation on the draft of the new standards is open, with submissions closing on 26 September.
This is just one step in the process of increasing awareness, expanding access and improving quality in palliative care. We look forward to receiving your feedback.
Professor Patsy Yates is the president of the Palliative Care Australia board.