While the use of the word ‘holistic’ has become a cliché in connection with almost any service, it’s true meaning is apt to palliative care.
Even the roots of the word ‘palliative’ indicate an ‘embrace’, coming from the Latin ‘pallium’ – ‘a cloak’ – which metaphorically signifies an intention to wrap around and comfort the patient.
Archbishop Coleridge encouraged this expanded meaning of the discipline recently when he wrote, “controlling pain is part of it, but true palliative care is broader and deeper, embracing the whole person – physical, emotional, psychological and, not least, spiritual – as they face the great mystery of death.”
As Australia celebrates Palliative Care Week (May 23-29) some new research by a peak body reveals good levels of awareness but a limited understanding of what palliative care truly is.
The key findings of the most recent Palliative Care Australia (PCA) survey revealed the public’s good disposition but general lack of knowledge about palliative care, most tellingly:
- Three quarters of Australians (76%) are likely to ask for palliative care for themselves or someone close to them if they have a serious, prolonged or terminal illness.
- Only four in ten Australians (39%) think a person can first ask for palliative care when they are first diagnosed with a terminal, chronic, or degenerative illness.
- Fewer than one third of Australians (31%) think that GPs can provide palliative care.
The survey results underscore the need for the new campaign Palliative Care – It’s More than You Think which PCA will launch across May, June and July.
PCA Chair Professor Meera Agar said the campaign would challenge perceptions and start conversations about end-of-life care.
“At its heart, the campaign is aimed at informing, empowering and encouraging Australians living with a life-limiting illness to engage with their health care professionals early in their diagnosis, so as to live as well as possible for as long as possible,” Professor Agar said.
“While the true definition of palliative care is much broader than the care provided at the end-of-life, as many Australians incorrectly believe, all palliative care shares one key characteristic in common.
“It is about quality of life and helping people with a life-limiting illness live their lives as well as possible for as long as possible.
Resources that explain clearly and simply what palliative care is, who it is for, who can provide it, and where palliative care can be provided form a key part of the campaign.
“Palliative care really is more than you think. It’s for anyone of any age – from babies to older adults – who have been diagnosed with a life-limiting illness, and it can be provided alongside curative treatments, or when those treatments have ended,” Professor Agar said.
If the PCA survey results indicate a public lack of understanding about palliative care, the trend is likely repeated amongst State Parliament MPs, many of whom are due to vote on euthanasia and assisted dying laws in the coming months.
To do so without knowing how proper palliative care could extinguish the need for such legislation represents an alarming blind spot.
Speaking at a recent webinar “The Care First Approach to End of Life Care”, St Vincent’s Hospital Palliative Care specialist Dr Phillip Good said the palliative care question was more urgent to address than draft VAD legislation.
“Palliative care is a health issue and voluntary assisted dying is a societal issue and I think people seem to sort of confuse the two,” Dr Good said.
“People come to palliative care because they want to live; they want to live as well as possible, usually as long as possible.
“I think my concerns are echoed by a lot of palliative care clinicians in Queensland; we all think there should be really excellent access to palliative care and that should be the first thing that the government should be investing in.
“No one should choose Voluntary Assisted are dying because they don’t feel they can get adequate palliative care,” Dr Good said.
It is no small irony the Queensland Premier aired the first reading of the euthanasia and assisted suicide (aka as VAD) draft legislation in state parliament during National Palliative Care Week 2021.
This is because palliative care practitioners purposefully exclude euthanasia and assisted suicide as part of their suite of offerings – on the basis it is not a medical treatment.
Only a tiny percentage of Queenslanders may access Euthanasia, but 100% of Queenslanders will require palliative care – and the cost of proper palliative care is small in comparison to the State health budget.
Industry bodies estimate a properly funded palliative care system would cost less than $400 million per annum, or under 2% of the Queensland Health Budget.
Unfortunately the focus on palliative care has been lost amid the haste to introduce euthanasia.
That will leave Queenslanders without the dignified end to their life that they deserve.
Instead of being offered palliative care, they will be offered death.
It certainly undermines the often cited reasoning for VAD being about ‘choice’.
Until every Queenslander has access to high quality palliative care there is no ‘choice’.