For a number of reasons, not everyone who needs good end-of-life care is able to receive it, writes Yvonne Luxford
Perhaps it is because it is such a young discipline that palliative care engages in a lot of self-analysis. Unlike some other forms of navel gazing, this has positive ramifications for patient care and results in significant improvements in quality.
A major reason for Australia being awarded the interesting accolade of being the second-best place in the world to die is due to the federal government’s policy support for palliative care. This is represented in the National Palliative Care Strategy and various related funding initiatives, but significantly in the support for quality improvement initiatives.
The three programs aimed at improving quality in the sector itself – the National Standards Assessment Program, the Palliative Care Outcomes Collaborative and Caresearch – work closely and collaboratively to drive sector-wide improvement.
The ultimate result is that if you are fortunate to receive care from a specialist palliative care service you are very likely to experience the highest possible quality of life until the end, with your loved ones supported as they care for you, and into bereavement. Yet, access to palliative care in Australia is nothing short of a lottery, predominantly determined by your location, but also affected by your diagnosis, the education of your health professional, your cultural background and your age.
We are at somewhat of a crisis point. The fact that the Senate has launched an inquiry into the state of palliative care in this country is evidence that something needs to be done to improve the lot of Australians approaching the end of life.
But where do we start? Like most issues in health, the reasons that many Australians continue to miss out on palliative care services is complex. We need a rethink about the way that we do things.
Take education for example. We cannot deliver quality care without having an adequately trained workforce. Our rapidly ageing population relies heavily upon primary caregivers to deliver the right care at the right time. Yet a survey of GPs commissioned by Palliative Care Australia (PCA) this month showed that one third of those surveyed had received no palliative care training whatsoever as part of their medical degree.
How can we expect health professionals to deliver optimal care if their education completely ignores care of the dying? We need to make palliative care part of the core curriculum for all health professional training. And this must be true for every sector of the health workforce. Currently nursing education is quite likely to include palliative care in the curriculum, but medicine, aged care and pharmacy are lagging behind.
If you are only trained to cure, care of the dying is not intuitive. We need to ensure that the introduction of palliative care is not seen as giving up, but is recognised as the means of ensuring that people are empowered to die with dignity and respect.
But we also need to look at innovative ways of using our health workforce. Palliative care is delivered by a multidisciplinary team consisting of doctors, nurses, allied health, pastoral care and many more. A role that is really not understood is that of the palliative care volunteer. It is estimated that volunteers make up 60 per cent of the workforce of palliative care services in Australia, indeed, services would not be able to function without them.
Imagine the benefits of having a well-trained, well-managed palliative care volunteer workforce, freeing up time for health professionals to complete more complex tasks, and the outreach that could be achieved in community settings. This is certainly one area that needs more investigation.
Education is not just limited to those delivering care. We need the whole of society to be more knowledgeable about end-of-life issues. Australians aren’t afraid to say what they think. Why don’t we make our wishes about our end-of-life care clear?
In a survey commissioned by PCA for National Palliative Care Week, 88 per cent of people said they want to die at home if adequately supported to do so. However, when it comes to actually expressing these choices, either by talking to loved ones or health professionals, or writing them down in an advance care plan, we are silent. Some 78 per cent of people don’t know what advance care planning is, and of those that do, 90 per cent don’t have one.
We need national legislation around advance care planning. The current complexities around legal requirements, which differ from state to state, create barriers. Hitching up the campervan for a retirement trek is a dream and a reality, but will your advance care directive legally agreed in South Australia be recognised in Queensland? This shouldn’t be a concern for you or your treating clinician. We also need to ensure advance care plans form part of the eHealth records. Surely that goes without saying.
If we could get to a stage where people felt more comfortable talking about death and dying, where discussing how you wanted to be cared for at the end of life with those closest to you was the norm, as was recording these decisions well ahead of time, then it would be easier to deliver care that was in line with people’s preferences. Families would not be under pressure to make decisions that they don’t feel comfortable making at a time of great emotional stress, and services could be tailored to each person.
It sounds ideal doesn’t it? Providing person-centred care is unfortunately not as easy completing an advance care plan. It requires significant investment by governments to ensure that services are well resourced and able to meet demand.
We have seen some promising developments. The aged care reform package has a clear focus on providing care in people’s homes and giving them choice and control over their care, but we need more funding directed specifically to palliative care within this. The commitment to palliative care support and education in the package is a very welcome start, but doesn’t yet guarantee quality care at the end of life for all Australians.
We must improve the outlook for older Australians. The bottom line is that we must maintain and improve a quality of life and death that you and I would deem reasonable for ourselves and others, that ensures comfort, dignity and freedom from preventable pain.
Dr Yvonne Luxford is the chief executive officer of Palliative Care Australia.Do you have an idea for a story?
Email [email protected]