Catryna Bilyk (Tasmania, Australian Labor Party) Share this | Hansard source

In 2016 I started a campaign to save the peak body for palliative care in Tasmania from closure. At that time, Palliative Care Tasmania was funded to deliver their services through a grant from Labor's Better Access to Palliative Care program. Palliative Care Tasmania was facing the tragic prospect of closing its doors because the federal government had not renewed its funding. After the grant period expired, Palliative Care Tasmania was only just staying afloat with the use of reserve funds. In order to survive, it had to close offices, sell vehicles and let several staff go, and their CEO even cut back her hours substantially. It is to her great credit that the CEO stayed on and continued fighting for the organisation, despite its tenuous future and the impact it had on her personally. It took almost a year of campaigning, but the government finally came through in 2017 with a three-year, $1.5 million funding agreement.

It's incredibly frustrating and very disheartening to have to return to this issue three years later and to once again have to plead for Palliative Care Tasmania's continued survival. Sadly, the latest three-year funding agreement is coming to an end in June this year, and neither the Morrison government nor the Gutwein government has committed to further funding. Earlier today I tabled a petition with over 900 signatures calling for the state and federal governments to work together to come up with a funding solution. This call was echoed by a resolution of the Senate, also passed today. If Palliative Care Tasmania does not receive further funding as well as funding certainty going forward then the Liberals should hang their heads in shame.

We're not talking about big bucks here; we're talking about a paltry $500,000 a year. What they achieve with those funds is incredible. In addition to the work that they do in advocacy and policy advice for palliative care services, they also have a highly successful community education and professional development program. This program, which covers palliative care, death, dying, grief and bereavement, reaches over 4,000 Tasmanians a year. To give you an idea of the impact this has, a report by the Grattan Institute titled, Dying well, found that 70 per cent of Australians want to die at home, yet only 14 per cent get to do so. Many Australians experience what the report described as impersonal, lingering and lonely deaths, mostly in residential aged care or acute care settings.

A key reason for the failure to provide Australians with a good death is that not enough of us write advance care directives or discuss our end-of-life wishes with family or close friends. This means, when someone is dying, often plans haven't been put into place to give them the end-of-life care that they wish for. It's even more problematic when the dying person loses the ability to communicate and their family struggles to know what their wishes are or, even worse, ends up arguing over what their wishes might have been.

As is explained in Palliative Care Tasmania's education sessions, palliative care is more than just health care. It addresses a patient's physical, psychological, emotional, cultural and spiritual needs. We know from research that the key to quality palliative care is planning for your future care and having conversations about your care wishes. This includes writing an advance care directive—which has legal force in all states and territories through either statutory or common law. Every Australian should make a written plan for their care when they have life-limiting illnesses and discuss these plans with the people closest to them.

As a society we need to be more open about death and dying. Regrettably, it is a somewhat taboo subject in Australia. Despite the taboo, it is quite amazing—once you start the conversation—how open people can be about the topic and what you can discover, not only about others participating in the conversation but also about yourself. I encourage anyone who is listening right now to give it a try with your family, friends or even your work colleagues.

There are many differences when it comes to where people would like to spend their final days, who they'd want to be with, whether they would like to have medical intervention to prolong their life, whether there are any cultural or religious rituals they would like to observe and so on. Some cultures, of course, are far more open about death—and you would be surprised what a difference that openness makes to them having end-of-life care delivered in accordance with their wishes. That's why Palliative Care Tasmania's community education program is so important and so valuable. It may sound like something fairly straightforward, but it's amazing what impact this program has. It is estimated that if the program resulted in only 10 per cent of participants understanding advance care planning and making an advance care directive, Tasmania's acute healthcare system would save $25 million a year. Conservatively, Palliative Care Tasmania could be achieving further savings of $30 million just through their work in residential aged care. That's $55 million in savings for an investment of only half a million. A savings ratio of more than 100 to one surely should be a reason, on its own, to save Palliative Care Tasmania.

But this is about more than just money. Palliative Care Tasmania is helping thousands of Tasmanians with life-limiting illness to have choice, control, comfort and dignity in their care. Their work is helping to avoid a great deal of unnecessary distress and suffering. And I'm talking not only of the distress and suffering experienced by people with life-limiting illness, but that of their close friends and families, as they support, comfort and care for their dying loved ones. I know this from personal experience: I recently supported a close friend with dementia through the final days of her life and I understand the massive difference it made to her to have her care wishes communicated to her family well in advance. Even with the best plans and care, dementia is a distressing disease, not only for the person living with it but for their loved ones. So imagine how much that distress and suffering must be exacerbated for people suffering dementia and other life-limiting illnesses when their care wishes are unknown and unplanned for—and imagine how much the distress and suffering is exacerbated for their families, too. Yet a simple, low-cost public education program, like that offered by Palliative Care Tasmania, can improve those circumstances for hundreds, if not thousands, of Tasmanians.

It's to the great shame of both the state and federal Liberal governments that neither of them will provide the small amount of funding it would take to save Palliative Care Tasmania from closure. Their current funding comes from a federal grant, but most state and territory palliative care peak bodies receive recurrent funding from state and territory governments. Having said that, I don't care for buck-passing or arguments over jurisdictional issues. I don't care whether the state government does it or the Commonwealth does it, or whether they work together on a joint plan. Someone, though, has to front up with the funding.

But it's not just a funding extension they need; it's funding certainty. Even if a further funding agreement is entered into, I don't want to be back in this place in another three years time pleading once again the case for Palliative Care Tasmania's survival. Any funding provided needs to be guaranteed annually over the forward estimates. Without providing that certainty, it not only makes it impossible for Palliative Care Tasmania to engage in long-term planning but it gives their staff a great deal of anxiety about their future.

Funding this organisation is an absolute no-brainer. It's actually an economic no-brainer. It would cost millions of dollars for the Tasmanian Health Service to have to deliver the same services. And while that's an unfortunate waste, the even greater waste would be if the services were no longer available to the sector. It would be the height of stupidity to let Palliative Care Tasmania close, and yet this is what the Liberals at both the state and Commonwealth levels appear to be about to do. Not only are they shifting the cost burden onto other services but they will be guaranteeing more distress, discomfort and suffering for thousands of Tasmanians who will not have their end-of-life care wishes carried out.

So shame on those opposite and shame on their colleagues in the Tasmanian government. Listen to the Senate, listen to the Tasmanian people and save Palliative Care Tasmania now.