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

Two and a half years ago I successfully campaigned to save Palliative Care Tasmania from closure. I'm bitterly disappointed to have to rise again in this place and plead for their continuing survival. The organisation's three-year funding agreement, granted in 2017, expires in June 2020 and neither the Morrison government nor the Hodgman Liberal government in Tasmania has given them any further funding commitment. Palliative care throughout Australia is already grossly underfunded and under-recognised, as it has been for decades. So the thought that we would allow services to go backwards is mind-boggling.

Let me give some background on exactly what palliative care is and what Palliative Care Tasmania does, to explain why this organisation cannot be allowed to close its doors. Palliative care is defined as care for people with life-limiting illness. But it's not just medical care. As I explained a few weeks ago in this place, it is more a holistic form of care that covers many aspects of a patient's needs—physical, psychological, emotional, social, cultural and spiritual. Looking at care from this perspective, we can see that taking a purely medical approach to caring for someone in the end stages of life can actually do them more harm than good. People in the end stages of their life want their wishes to be carried out around how pain is managed, under what circumstances they will or won't receive medical intervention and, importantly, where they want to spend their final days.

But the purely medical approach to palliative care is what happens all too often. I've mentioned many times before the Grattan Institute's 2011 Dying Well study, which found that 70 per cent of Australians would prefer to die at home but only 14 per cent get to do so. Why does this happen? It is because too many people think of palliative care as just medical care and they either don't consider the other aspects of palliative care or, sadly, consider them too late.

In my recent adjournment speech about palliative care for people with disability, I mentioned that the response of some disability service providers is to immediately send someone into acute care when they have a life-limiting illness. While a person may receive the best medical care possible in hospital, it does not necessarily give them ready access to the emotional support and comfort they could receive by being in a familiar environment and continually surrounded by people they love.

Best practice in palliative care tells us that we need this holistic approach to be adopted through policies in every setting that may have caring responsibilities for people with life-limiting illnesses—settings such as aged and disability care, for example. But let's not forget that it can also apply to children with life-limiting illnesses. These policies need to clearly identify that all aspects of care are to be addressed, and training and professional development must be provided to back up these policies.

But even that is not going far enough because everyone, for the sake of their own care and care of their loved ones, needs to understand what palliative care is. Every adult should make an advanced care plan in readiness for a time when they have a life limiting illness and discuss that plan with family members or close friends. Why do we all need to do this? Because if we don't have care plans by the time we need them, it could be too late. I do need to remind people that not everybody dies old and that a lot of people really don't know when they will die, so you really need to think about an advanced care plan while you're healthy.

Advanced care planning is vital to having a good death. Unfortunately, most Australians are very uncomfortable with talking about death and dying. We even avoid the words and replace them with euphemisms like 'passed away', 'gone' or 'departed'. To get Australians talking about their end-of-life wishes we need to get them to overcome their reluctance to discuss death, and this means driving a cultural change.

This brings me to the importance of organisations like Palliative Care Tasmania. Not only are they advocating for more government investment in quality palliative care but they are also driving cultural change in attitudes to palliative care within other organisations. They do this through policy advice and training. A case in point is their recent project, the Tasmanian Palliative Care Community Charter, which is an agreement on the principles of palliative care developed in consultation with service providers and the Tasmanian community.

Palliative Care Tasmania also held a conference in Hobart a few weeks ago, which I had the pleasure of attending and addressing on behalf of shadow health minister Mr Chris Bowen. The conference had around 200 delegates, from Tasmania and around Australia from the palliative care sector, who came together to share ideas on best practice in palliative care. There are some world-leading examples in Tasmania, such as the work of Li-Ve Tasmania, which I referred to in a previous speech in this place. Palliative Care Tasmania is not just improving the state of palliative care through their work with the sector; they're also driving cultural change throughout the broader community.

A community education program covering aspects of palliative care, death, dying, grief and bereavement, which was started with funding through Labor's Better Access to Palliative Care Program, has now been delivered to between 25,000 and 30,000 Tasmanians. One of the simplest ways to help people have a good death is to make sure they plan for and discuss their end-of-life wishes before they end up requiring palliative care. That's why community education is so important. It raises awareness for the need to plan now for the care you may need later in life.

If Palliative Care Tasmania loses its funding and is forced to close its door, this work will just grind to a halt. This means fewer Tasmanians will make advanced care plans, fewer Tasmanians will discuss their end-of-life care wishes with family or close friends and fewer Tasmanian organisations, such as residential aged care facilities and disability care facilities, will provide and facilitate quality palliative care. What is the ultimate consequence of this? Fewer Tasmanians will have a good death. In fact, more Tasmanians will likely experience what the Grattan Institute's Dying Well report referred to as a lonely, lingering and impersonal death. Is this what those opposite, the Tasmanian parliamentary Liberal colleagues, want?

Palliative Care Tasmania's core funding is $500,000 a year. In the overall scheme of both the state and federal budgets, it's a drop in the ocean. With the amount of work they are doing, the goals they have been kicking and the respect they have from the sector, Palliative Care Tasmania is providing incredible value for money. The case for funding this organisation really should be self-evident. If the Tasmanian government tried to deliver these services directly through the Tasmanian Health Service, it would cost them millions more. With over 2,000 Tasmanians dying each year, surely half a million dollars is a small price to pay to ensure that a good portion of them can have a better end-of-life experience than they otherwise would have. But both the Tasmanian and Australian governments keep passing the buck to each other.

I've little time for the arguments over whose responsibility it is to provide the funding because, frankly, I don't really care. Either government needs to step up to the plate, or, failing that, Minister Hunt needs to get together with the Tasmanian health minister Sarah Courtney and work out a solution. Whoever comes forward with the funding, it simply won't be good enough to throw another three-year grant at Palliative Care Tasmania and then wait for them to again come begging, cap in hand, at the end of the grant period.

In addition to funding, they need funding certainty going forward. Without that certainty, each time the organisation comes to the end of a three-year grant period, their staff have to deal with the uncertainty of not knowing whether or not they will have a job. As staff leave the organisation, they take valuable knowledge, skills and contacts with them—assets which are extremely difficult to replace in this area. It also makes it impossible for Palliative Care Tasmania to engage in any meaningful, long-term planning—something which, from a policy point of view, is badly needed in the area of palliative care. Most other states and territories have palliative care peak bodies that receive ongoing, recurrent funding—not one-off grants every three years.

I've organised a petition on this issue, which so far has gathered hundreds of signatures, and I'll be tabling this petition in the Senate during the first sitting week of next year. I sincerely hope that, when the time comes to table the petition, it will have been made redundant. If, for the sake of saving a paltry $500,000 a year, the Morrison and Hodgman Liberal governments force Palliative Care Tasmania to close, they really should hang their heads in shame.