Last week I spoke in the Senate about the importance of having conversations with friends and families about how we wished to be cared for towards the end of our life. I explained that, by taking the time to have these conversations and write an advance care directive, we are more likely to have the opportunity during our final days to be cared for in our preferred setting and in accordance with our wishes. We know that for 70 per cent of Australians that means dying at home. Sadly, only one in five people who would prefer to die in their own home will get that opportunity. Instead, thousands of Australians will experience what the Grattan Institute refers to as ‘impersonal, lingering and lonely’ deaths.
I also spoke last week about Palliative Care Tasmania and the fantastic work they do educating the Tasmanian community about end-of-life care, and pointed out that their funding runs out at the end of this month. As it currently stands, Palliative Care Tasmania will soon have no choice but to close their doors, and Tasmania will lose a very, very valuable service—a service which has now helped to educate over 13,000 Tasmanians about end-of-life care, dying, grief and bereavement.
Earlier today in the Senate, I tabled a petition which called for an extension of funding to Palliative Care Tasmania. There were hard-copy and online versions of the petition, which received about 940 signatures, combined, in just one month. This goes to show the appreciation that people have for this important program. They understand that planning for end-of-life care is as important as, if not more important than, planning a funeral or writing a will.
Too often we give consideration to the arrangements for after our death but not enough to what happens in the days or weeks leading up to it. And—even when we do consider having these conversations—without community education, how can we be sure how to start the conversation or know what issues we need to cover?
Community education about issues around dying and end-of-life care is relatively inexpensive when you consider the benefits. It is amazing how much the end-of-life experience for hundreds, possibly even thousands, of Tasmanians has been improved because of the services provided by Palliative Care Tasmania.
Twenty-six per cent of Tasmanians die at home, and that is almost double the national average. Palliative Care Tasmania have no doubt contributed to this increase, working together with the various providers delivering the Better Access to Palliative Care Program. Along with the support for the petition I tabled, this outcome is a testament to the success of this fantastic community education program. Surely, rather than shutting the program down, we should be considering it for a national rollout, just as Labor committed to before the federal election. Just imagine how many thousands of Australians could have their end-of-life experiences improved by this program if it were rolled out nationally.
You have heard what I have to say about the value of the program to Tasmanians, but you do not have to take just my word for it. One of Palliative Care Tasmania’s partners in the delivery of their program, the Tasmanian branch of Council on the Ageing, or COTA, was interviewed by the ABC recently about their program. COTA’s CEO, Sue Leitch, said:
If you can get a family in to support a person’s wishes around what they want to have for their end-of-life care I think it’s a very important thing that can happen and this is the sort of the work that Palliative Care Tasmania was doing.
And, in relation to Palliative Care Tasmania’s ongoing funding, Ms Leitch said:
I do hope that they see wisdom in the benefit of this proposal because I think, for one thing, ending life in an acute care hospital situation costs a lot of money to the system and it also causes distress to families.
To give you an idea of the value of this program to the community, I will read some of the comments from people who signed the online petition. To comply with Senate tabling rules, I was not able to include these comments in the tabled petition, but it would be a shame not to get at least some of them into Hansard and on the public record. Greg of Mornington wrote:
I have had two immediate family members affected by terminal illness whose final days with their family at home were much better than they would have been if they been in hospital. This is about dignity in one’s final days—there’s not much more important than that.
Sheelagh of Hobart wrote:
As a former Palliative Care nurse I ‘get it’. Community Palliative Care is a vital service to give people the choice of dying in their own homes with some dignity and adequate pain relief. Palliative care nurses provide much needed care and support for all the family not just the patient.
The cold hard fact is that it is far more economical to nurse people in the comfort of their own home than it is to provide similar care in a hospital setting.
Maggy, also of Hobart, wrote:
During the last 5 years the researched and evidence based information which has been gathered by the PCT has been invaluable. Many diverse communities where able to dialogue, explore and unite together to help make the dying process a transitional journey. So thankful for many diverse grants that were available in order for the work to commence. To openly discuss the dying process is a huge hurdle in western society.
The final comment is from Dee in Lilydale:
Investment in the work Palliative Care Tasmania does is wise indeed as it imporves the quality of life for the dying and their carers. Dying at home is a natural choice and saves governments thousands of dollars in the long run. The emphasis on self expression and the role the arts play in this area is well recognised by PCT and cannot be translated to in dollar values. Art plays a vital role in the realm of healing and positive health. The dying have already too few options!
These are just a handful of the just over 100 heartfelt comments that were submitted with the petition. They demonstrate that there is not just a breadth, but also a depth, of feeling about this issue.
I have been told by the office of the Minister for Health that there is an evaluation being conducted of all the elements of the Better Access to Palliative Care Program, which includes the community education program run by Palliative Care Tasmania. It is expected to be completed in December this year. But, unfortunately, this will be too late for Palliative Care Tasmania, whose funding will not last beyond the end of this month. They have already started closing offices and dismissing employees in order to keep going.
So tonight I am calling on the Turnbull government, again, to extend PCT’s funding for another four years, but if I can secure funding of even half a million dollars for the next twelve months, that will be a great outcome. It will at least keep Palliative Care Tasmania going until the evaluation process is complete, and I am confident—absolutely confident—that the outcome of that evaluation will be favourable to them. If the government has made a commitment to continuing this program after the evaluation, it would be a huge shame for them to lose the skills, knowledge and experience that Palliative Care Tasmania holds. This would mean having to rebuild the program from the ground up, re-establish infrastructure, rebuild partnerships and train new staff. And that is why the Turnbull government needs to make a funding commitment to Palliative Care Tasmania now, because time is running out.
I have also written to the Prime Minister, asking him to intervene and to make sure that Palliative Care Tasmania funding is continued, at least until after the evaluation process has taken place, because it is just not smart. It is not smart to have a program that has helped so many people through such a sad and complicated process. They are going to cut the funding. It ends in September. At that end of December, when they have done the evaluation and decided that it was a wonderful program, they have to start again.
I have seen Senator Lambie in the chamber. I know Senator Lambie is supportive of the Palliative Care Tasmania process. I understand that she has had quite a number of conversations. And can I say some of my colleagues from Tasmania from the government side have also been very supportive. So this is not a partisan position. This is something that we are pushing for the benefit of all Tasmanians, and nationally, because it is absolutely imperative that programs like these continue.
To have to start again seems utterly, utterly stupid to me. I do not know why the government cannot come to a decision, make a decision, give Palliative Care some security so that they know they are there at least until the evaluation process is rolled out, and then they have everyone in place ready to roll when they realise how good the process had been and how good the programs have been, and it can become part of a national program.
It is absolutely time in Australia we started talking about how to die well and how to die with dignity. This program needs to be kept going. So, once again, I am calling on those opposite to talk to their colleagues, to talk to the Minister for Health and to talk to Mr Turnbull, the Prime Minister, to make sure this program continues.