ADJOURNMENT;Palliative Care – 30 Aug 2016

I, too, add my congratulations to you, Madam Deputy President, on reaching that esteemed position. I am sure you will fulfil your role absolutely wonderfully.

Tonight I rise—as did my state colleague Senator Polley—to speak about palliative care and, in particular, Palliative Care Tasmania. In 2012, the then Labor government provided $2.67 million over four years for the organisation to deliver the Networking End of Life Care Across Tasmania project. This funding was due to run out on 30 June this year. However, Palliative Care Tasmania have been able to use unspent funds to extend the program until the end of September. After that date, they have no guarantee of further funding.

Palliative Care Tasmania’s program covers a huge range of activities. They deliver education on end-of-life care for health, aged and community services staff and volunteers, and to the general community. They also promote discussion of death, dying and grief through innovative activities such as arts and youth based projects. As well as undertaking these activities directly, some of the funding is directed towards grants, administered by Palliative Care Tasmania, to community organisations to deliver their own activities. So far, more than 70 organisations have been recipients of grants totalling around $1 million. The program aims to increase the community’s awareness and understanding of palliative care and of grief and loss. It supports community recognition that death is a natural part of life. The program has been an outstanding success. In just the past 18 months, Palliative Care Tasmania’s activities have reached over 6,000 Tasmanians directly and more than 7,000 indirectly through their community grants.

So why is this so important? Much of the debate in this place focuses on how we go about improving the lives of Australians. And while we constantly talk about how to provide a good life for the people we represent, we tend to give very little attention to what our constituents need to have a good death. There is an urgent need to dramatically improve Australians’ experiences of dying. This was well illustrated in a 2014 study by the Grattan Institute titled Dying well. The study found that, despite 70 per cent of Australians expressing a wish to die at home, only 14 per cent managed to do so. This is half the rate of comparable countries, such as New Zealand, the United States, Ireland and France. More than half die in hospitals and a third in nursing homes, and the rate of hospitalisation is increasing as our population ages. The Dying well study found that many Australians feel disempowered in their final days, with many experiencing ‘impersonal, lingering and lonely’ deaths. Does this sound like the kind of experience we want for our friends and family members in their final days? I think not.

While there are a number of contributing factors to this problem, one of the major factors is quite simply and easily addressed: have the conversation. Not enough Australians are having conversations with their family members about how they wish to be cared for when dying. And not enough Australians express their wishes in writing. A lot of this comes down to the fact that death is an uncomfortable subject, and Australia seems to have a culture that shies away from talking about it. Unfortunately, in many instances the conversation comes too late, when a palliative care patient lacks the capacity to advocate for themselves or perhaps even the ability to communicate their wishes in any meaningful way.

There are two simple steps that every Australian can take which will give them a good chance of vastly improving their end-of-life experience: (1) write out your wishes in an advance care directive; and (2) discuss your wishes with your partner, your family, or a close friend or relative. While there is an element of personal responsibility in having these conversations, there is also a role for government in educating Australians about the importance of this responsibility. For those who do consider having the conversation, many Australians will not know how to start the conversation or what topics they need to cover. This is where Palliative Care Tasmania’s community education has been so effective.

It is estimated that, in Tasmania, the number of Tasmanians dying at home is now as high as 26 per cent. This is still well short of the 70 per cent Australia-wide who, according to the Grattan Institute, want to, but it is a significant improvement on the 14 per cent Australia-wide who do. The chance to die in your preferred setting can lead to a greatly improved end-of-life experience. But there are other benefits too. More Tasmanians dying at home means significant savings for our healthcare system. The difference in cost over a few months between delivering palliative care in hospital and palliative care in a home setting can amount to tens of thousands of dollars for just one patient. Investing in a program that encourages more Tasmanians to discuss death and dying, and more Tasmanians to discuss their wishes for end-of-life care, makes good sense both socially and economically.

The funding to Palliative Care Tasmania delivered by Labor was part of a broader palliative care package called the Better Access to Palliative Care program. The other components of this program included: $35.26 million to deliver at least 2,000 packages of community based palliative care through hospice@HOME, which Senator Polley mentioned; and $11 million to the Tasmanian Department of Health and Human Services to strengthen the capacity of palliative care services and networks to improve access to community based palliative care.

During the recent federal election, Labor committed to extending elements of the Better Access to Palliative Care program—including the funding for Palliative Care Tasmania. While our commitment was to continue the program just in Tasmania, we also said, quite clearly, we would evaluate it for a national rollout. That is how good this program is. The Turnbull government, by contrast, has yet to make any commitment to Palliative Care Tasmania beyond the end of their current funding agreement. I have started a petition in support of Palliative Care Tasmania’s funding, which I will be tabling in the Senate in the next sitting week, in mid-September. There is both a written and an electronic version of the petition, and so far both combined have attracted over 700 signatures—and that is in about just two weeks.

I also wrote to the Minister for Health outlining my concerns about the future of funding for Palliative Care Tasmania. In response to my letter, the minister’s office has advised that the entire Better Access to Palliative Care program is being evaluated for its appropriateness, effectiveness, efficiency and impact. Funding of $280,000 has been provided for the evaluation, which is being undertaken by Australian Healthcare Associates and is due for completion at the end of December. That response simply is not good enough. Even if the evaluation of the community education component is favourable, which I am sure it will be, Palliative Care Tasmania will not be able to hold out until December and they will have to close their doors. If the evaluation is favourable and Palliative Care Tasmania has already wound up, who is the Turnbull government going to give the funding to?

I doubt any other organisation will have the knowledge, skills and experience to deliver this whole program as effectively as Palliative Care Tasmania have, given they have already been delivering it for the past four years. It will be a less than ideal outcome if the government finally agree to continue this program only to find that they have to rebuild it from scratch. While I am calling on the government to fund the program for another four years, even some interim funding—say, $550,000 for the next 12 months—could help Palliative Care Tasmania to keep their doors open while the evaluation is being concluded.

At this point, I would like to acknowledge the support for my campaign offered by other members and senators. My Labor colleague the member for Franklin, Julie Collins, I know has promoted my petition, as have other state and federal Labor colleagues. Senator Lambie has also helped to promote my petition and has lent her voice to the cause. And, while he has not been as vocal, I know that Senator Abetz has been quietly advocating for Palliative Care Tasmania within government, and I do thank him for his support.

As I said earlier in this speech, Palliative Care Tasmania will not survive beyond September if the government does not agree to an extension of their funding. This is a program which has been successful in educating thousands of Tasmanians about having conversations about death and bereavement. It has improved the end-of-life care experience for many, many Tasmanians in their final days. It has been embraced and valued by Tasmanians, as the support for my petition shows. For the sake of the thousands of Tasmanians who have benefited from this program, I urge the Turnbull government to fund Palliative Care Tasmania beyond September—otherwise, they will simply have to cease to exist.

The DEPUTY PRESIDENT: Thank you, Senator Bilyk, and thank you for your congratulations.