I rise tonight to speak on the government’s response to the 2012 Senate Community Affairs References Committee report, Palliative care in Australia. We know from a Grattan Institute report in 2011 that 70 per cent of Australians have expressed a preference to die at home, but, from the same report, we know that the number of Australians who actually die at home is about 14 per cent, with many others dying in hospitals and nursing homes. The sad reality is that the experience of most Australians in their dying days does not accord with their preferences. The Grattan Institute report describes their end-of-life experience as ‘impersonal, lingering and lonely’. I will repeat those words, and, as I do so, I encourage those in the chamber and the gallery, or listening to the broadcast of these proceedings, to imagine it as their family member, their relative or their loved one having this experience in their dying days: ‘impersonal, lingering and lonely’.
There is no easy solution to this problem, but there are some simple steps we can take that can make a big difference in improving the end-of-life experience for Australians. One of these is encouraging Australians to have conversations with their family members and loved ones about their wishes at the end of life. Not only is this necessary to ensure proper planning for end-of-life care, but some may not be capable of communicating their wishes. It is an uncomfortable but necessary conversation to have.
So how do we know how to start these conversations? How do we know what issues we need to cover? This is where we need to understand that everyone in the community, not just healthcare professionals, is responsible for end-of-life care, and there is a need for community education so that we all know how to have conversations with our close friends and family to ensure that their care wishes are met in their final days. The importance of having such conversations is covered in some depth in chapter 13 of the committee’s report, which deals with advance care planning.
Turning to the government’s response, I bring to your attention, Mr President, recommendation 11:
The committee recommends that service delivery models include a greater emphasis on community-based care, ‘dying in place’, and a reduction in unnecessary hospital admissions.
The government, in its response to this recommendation, included the following advice:
The Australian Government funds the $49.2 million Better Access to Palliative Care in Tasmania Programme, which is trialling a community-based palliative care model and aims to increase access to community-based palliative care for people with life limiting illness nearing the end of their life.
So I am surprised the government even knows what the BAPC program is, given the health minister’s continual confusion over it. In a letter to the Kingborough Chronicle published on 23 August, the minister referred to the BAPC program as part of the government’s commitment to palliative care. In fact, it was funded in 2012 by a Labor government, and, at the time the minister’s letter was published, most elements of the program were close to winding up, without a commitment to further funding.
In her letter about the government’s commitment to palliative care, the minister spoke about aged-care funding, when palliative care actually affects Australians of all ages, including children. In providing a comment to an article in the Hobart Mercury on 20 September, a spokesperson for the minister said that one of the recipients of funding under the program, Palliative Care Tasmania, had received over $60 million, when in fact they had received—listen to this—$2.67 million. It is a bit of a difference! The minister’s office also stated that Palliative Care Tasmania was given an extension of funding to meet their outputs, when in fact they underspent their funds and exceeded their outputs. So it is just atrocious.
I am appalled that the government would hold up this program as an example of their commitment to palliative care when they refused to continue funding it and do not seem to understand at all what it is about. Nor do they appear to understand how successful it has been.
As a result of this program, the number of Tasmanians able to die at home, in accordance with their wishes, has almost doubled, from 14 to 26 per cent. This has resulted in a dramatically improved end-of-life experience for many Tasmanians, and savings in Tasmania’s acute health care system. Despite its overwhelming success, the funding allocated to the BAPC program is about to run out.
This government has made it clear, through the health minister’s correspondence to me, that the National Palliative Care Strategy represents their commitment to palliative care. I read from this that the government is not going to entertain any changes to the strategy, or any new funding, despite the BAPC program currently undergoing an independent evaluation, which is due to be completed in December.
My colleague Senator Polley asked the Department of Health some questions for me about the future of the BAPC program in the latest round of Senate Estimates. Quoting the Department of Health’s Deputy Secretary, Mr Mark Cormack, in response to one of these questions, I say:
The evaluation will be a very useful piece of information for the department, and for the government should it turn its mind to further investments in palliative care, or further refinements in its overall policy approach to palliative care, anywhere in Australia, including Tasmania.
So, while it is comforting to know that the results of the evaluation will not be completely ignored, it is completely unacceptable for the government not to at least keep the door open to the possibility of extending any element of the BAPC once the evaluation has been completed.
What this government fails to understand is that, when the funding for each element of the BAPC program runs out, all the skills and knowledge gained by the staff delivering those services are lost. Even if the services are funded in the future in another form by another provider, this knowledge, this learning and experience, will take years to rebuild.
For one organisation, Palliative Care Tasmania, their funding has already run out, and they are now struggling for survival. This organisation was given an agreement to deliver community education about palliative care, dying, grief and bereavement, with a target to reach 1,000 people. They have instead reached more than 13,000.
Through this community education, Tasmanians have benefited from a greater awareness of the palliative care options for themselves and their loved ones. They have been given an awareness of the importance of having conversations with friends and family about their end-of-life-care wishes, and the importance of making advance care directives to help ensure that these wishes are carried out.
Nothing in the government’s response to this report gives me any confidence that this community education will be able to continue in Tasmania, or anywhere else across Australia. It is a relatively small investment that will pay huge dividends in improving the end-of-life experience for Tasmanians. And that is why Labor committed to continuing funding for Palliative Care Tasmania’s program and to evaluate it for a national rollout.
As I said in my most recent speech on this issue, I challenge the Minister for Health and Aged Care to come to Tasmania and explain to the staff of Palliative Care Tasmania, stakeholders and the thousands of Tasmanians who have benefited from their community education and advocacy services: what is going to fill the gap left by this government’s failure to continue funding for what has been a very highly successful program? I challenge her to explain to the more than 1,000 people who signed my petition why the Turnbull government does not consider this program worth funding—a program which has not only met but dramatically exceeded its targets.
This is my fourth time speaking in the Senate about this government’s failure to secure the future of Palliative Care Tasmania and I doubt it will be my last. We had, in my home state of Tasmania, a really successful community education program, that was allowing more Tasmanians to be listened to about their palliative care needs. It is a program that allowed more Tasmanians to talk to their loved ones and plan for their end-of-life care. It is a program that was saving money in Tasmania’s acute care system and contributed to ensuring that more Tasmanians who wanted to spend their final days at home had the opportunity to do so instead of experiencing the impersonal, lonely and lingering deaths to which the Grattan Institute referred.
It is a program that has come to an end, and may not be able to be revived, because of the inaction of this government. If the Turnbull government allows Palliative Care Tasmania to close its doors, I promise that between now and the next election, I will be relentless in reminding my fellow Tasmanians that it was this government that failed to rescue them.
I look forward to seeing the results of the government’s independent evaluation of the Better Access to Palliative Care program. And I look forward to it confirming what many Tasmanians already know about the success of Palliative Care Tasmania’s community education program. If Palliative Care Tasmania does not survive until then, it will be interesting, yet somewhat tragic, to hear how the Minister for Health and the Turnbull government intend to explain why they allowed this highly successful organisation to close. I just hope that they have the good sense to avoid having to give such an explanation, and instead save Palliative Care Tasmania with an extension of funding, which we have been asking for for a number of months. To date, they are still yet to come forward with any money.
Senate adjourned at 22:18