By Dr Yvonne Luxford
August 26, 2013
I have never heard a politician say that they want to die in pain and suffering. In fact, nobody has ever told me that they don’t want high quality care at the end of their life.
So why has this election campaign completely ignored palliative care? Have Australians stopped dying?
Obviously not – in 2011 nearly 147,000 Australians died. Of these, 107,000 would have benefited from access to palliative care services, yet only one third to one half did. You may know one of those who missed out, although I hope not. Their stories can be stark and harrowing, and leave you doubting that we are the compassionate society we imagine ourselves to be.
The issue is not just that we need to increase the specialist palliative care workforce (although we do), but it is also about ensuring that all health professionals are educated and kept up to date in advances in palliative care. We know that the majority of Australians want to be supported to die at home – to achieve this safely and appropriately we need GPs and community nurses who are confident in their generalist palliative care skills and knowledge. An afternoon training session a decade ago and a syringe driver just isn’t enough to support quality care.
The Productivity Commission Inquiry into Caring for Older Australians declared that palliative care is core business for aged care, and therefore for the education of aged care professionals. Yet we continue to hear of minimal training in palliative care – sometimes as little as one hour within an entire course. Even if you are lucky to receive appropriate training, your ability to care for the dying can be hampered by established programs and systems. This is why we are calling for the purchase of a license for the Gold Standards Framework with access for all aged care services. This highly successful UK program has been locally adapted in a few locations around Australia and has supported true culture change resulting in better care.
Given that the majority of Australians die in hospital we need to ensure that all health professionals, no matter their specialty, maintain currency of knowledge of palliative care. In some cases the specialist palliative care team may be needed, and it is important that everyone can recognise when this is appropriate. But mostly we need to be certain that whomever the treating professional is, that they are skilled to provide us with the best possible quality of life until the end.
Of course that quality of life can be significantly diminished if we are subjected to the indignity of unnecessary and futile tests, scans and treatments. Apart from embedding palliative care in the education of all health professionals, the other way to avoid this is to raise awareness amongst the entire community.
Palliative Care Australia (PCA) runs National Palliative Care Week each May in an effort to encourage the entire community to think and talk about death and dying. Every year the level of media interest grows exponentially, and hundreds of everyday Australians call their local radio station to join the conversation. We know that people actually want to talk about these issues – when he was Minister for Mental Health and Ageing, Mark Butler conducted a nationwide tour talking to older Australians. Every single community forum across the country raised the issue of death and dying. We need to expand these opportunities to raise awareness and start conversations.
We have been shining a light on the opportunity to have your wishes followed in your end of life care through the process of advance care planning and the appointment of substitute decision makers in case you lose capacity. Our annual surveys indicate that very few people have the conversation with their loved ones about what they want, but of those that do, their wishes are respected. Whether about where you would like to be cared for until you die, who you would like with you, or even what medical procedures you would prefer to avoid, we need to have these conversations – even if only to reduce some of the stress experienced by loved ones who don’t know what you would want.
The commitment to attach advance care directives to the Personally Controlled Electronic Health Record (PCeHR) will hopefully encourage greater use of this tool, but we also need it flagged and attached to all hospital records, GP records, community nursing records and aged care service records. What’s the point of having an advance care plan or formal directive if nobody else knows?
Of course, there are other barriers to overcome. Legislation regarding advance care planning is different in every state and territory. This is surely something that we can achieve national agreement upon to fix quickly so that both the community and health professionals feel protected. This has also been supported by COTA Australia and the Australian Medicare Local Alliance in their election platforms.
In most locations paramedics are required to actively intervene to extend life, despite a loving relative waving an advance care plan at them which requests the opposite. Unfortunately busy Emergency Department staff are known to send people straight back to an aged care facility without the treatment they need because they misinterpret the existence of an advance care plan to mean that no treatment should be given in any circumstances.
In both cases education is the key – education of all health professionals across their career, and appropriate protocols to support, respect and care for people appropriately and compassionately.
If it could all be solved with improved education the answer would be much easier, but we also need to address the lack of access to services in rural and remote Australia. Our current system seems to be predicated on the concept that if you live in the country you will be perfectly happy to leave your loved ones and move to the city at the end of your life. We need to provide better support for people to remain in their own communities, and in their homes if that is the preference of them and their family. This can be even more important for Indigenous Australians and others with strong cultural beliefs about where you spend the end of your life. The AMA has pointed out that the system for funding the medical care of palliative care patients is inadequate and therefore prevents access to GPs and results in more people ending up in hospital – this is exacerbated outside of urban areas where increased travel is the norm.
Palliative care is not just about cancer. It’s true that those dying with cancer have been most likely to receive palliative care, but we must expand access to include all chronic disease sufferers who could benefit. Change is slowly occurring with more people with renal disease receiving the benefits of palliative care, but many others – especially those with lung disease, heart disease, and dementia – continue to miss out.
Speaking at the National Press Club on August 13 Carol Bennett, CEO of the Consumers Health Forum, said that palliative care represented ‘a classic case in which we don’t address the real needs of older Australians, their carers and families. What they want and what they receive are often two very different things. Their experience is of an illness focused system seeking to prevent mortality at all costs – often disregarding the desires of the consumer.’
She noted the issue of appropriate palliative care as a critical issues, particularly the current disconnect between where people would prefer to die and actually die. ‘One in five Australians will die in an Intensive Care Unit. This figure is increasing. The fact that it continues to rise is an indictment on health care for older Australians.’
Some of the solutions we have identified for improving access to palliative care in the community include funding Medicare Locals to assess palliative care services and plan to meet local needs; funding research into the development of innovative service models for palliative care; providing in home respite care, as without the support of carers it is difficult for people to be cared for at home; and a national volunteering strategy to help meet the growing demand for palliative care in the community .
We must improve access to, and equity of, services. Palliative care must be available regardless of location, age, income, diagnosis or prognosis, social and cultural background, to support Australians to live well at the end of life. But we remain a very long way from achieving our goals, and Australians will continue to die inadequately supported, and in pain, until we address some core issues.
Let’s make palliative care everyone’s business this election campaign and provide Australians with what they want and deserve – access to high quality, reliable care over which they retain control, choice and dignity to the end of their life.
Dr Yvonne Luxford
Chief Executive Officer, Palliative Care Australia (PCA)
Yvonne is one of those boringly lucky people who works in a job she loves, in a field she is passionate about, with a team of wonderful people who care about what they do. Her background is predominantly in health – a field she doubts will ever become boring or appropriately funded.