Rachel Siewert (WA, Australian Greens) Share this | Hansard source

I present the report of the Community Affairs References Committee on palliative care in Australia, together with the Hansard record of proceedings and documents presented to the committee.

Ordered that the report be printed.

I move:

That the Senate take note of the report.

It is with pleasure that I table the Community Affairs References Committee report into palliative care in Australia. A great deal of work from a great number of people has gone into enabling us to table this report today. I particularly wish to thank all those who gave evidence to the committee and presented submissions. We had 138 submissions and many, many people gave evidence during the hearings. Because I always leave them until last I think I will start at the beginning this time and thank the secretariat in particular for the hard work that has gone into this inquiry and, of course, the senators of the community affairs committee. It is always a pleasure to work with the senators on the community affairs committee because we work on so many issues that we all care about.

I would like to thank Palliative Care Australia, who put so much effort into this committee's report. I would like to start by quoting Palliative Care Australia. Palliative Care Australia explained to the committee that palliative care is really about life and that it needs to be an integral part of our health system. They said:

In whatever way we perceive palliative care to be, the bottom line is that it is about life ‐ about the proper care of someone who is alive, someone who still has days, months or years remaining to their life. It is about maintaining and improving on a quality of life that you and I would deem reasonable for ourselves and others that ensures comfort, dignity and freedom from preventable pain. This is not an impossible ask. In fact it is imperative that we, as a civilised nation, ensure our end days are filled with good experiences and memories of meaningful and worthwhile relationships.

Palliative care is an issue that everyone needs to think about, but as Palliative Care Australia said to the Senate committee, despite government commitment and the dedication of health professionals, carers and volunteers, many Australians continue to miss out on receiving appropriate end-of-life care. It became clear during the Senate inquiry that not all Australians who do require palliative care are receiving that appropriate care, and we outline some of those examples. The committee did hear of many examples of excellent palliative care, but unfortunately we also heard some pretty harrowing cases of failures to provide appropriate palliative care—in fact in situations where services were not able to support somebody and they had passed away before they could get to them on their list.

We received submissions from 138 organisations, carers and individuals who shared their accounts and their personal experiences. In many cases those personal experiences were very intense and in some cases harrowing, but they taught us some valuable information. Palliative care has tended to focus in the past, and presently, on the aged and malignant influences such as cancer. We learned that we need to broaden that focus to ensure that there are proper services for younger people and for non-malignant diseases. We clearly heard that people want to die in place—they want to pass away in their place of choice, be that at home, where many people to choose to be, or in an aged-care residency, which for some people is at home. In many cases people's choices are not being met. Care depends very strongly on the care provided by both professional paid care and a vast number of unpaid carers. We need to care for those people too.

We need as a community to be discussing dying and palliative care, because if we do not have these discussions we are not going to be able to provide and get the service support for palliative care that is needed. Part of that discussion that Australians need to have is a need to talk about advanced care planning and directives. That discussion needs to be held so that when people are in a situation of making choices about their palliative care, they can have that discussion, but also when they are no longer in a position to be able to discuss it, their choices had been made clear.

The committee has made 38 recommendations. In other words we have said that there needs to be a number of things that need to be done to support palliative care better in this country. Some of those do include a recommendation for a national model framework for advanced care planning and directives, because they are different. We recommended that we need to be looking at national standards and potentially linking them to accreditation.

We have also talked in a number of recommendations about the need to look at palliative care funding. At the moment palliative care funding is delivered via the subacute funding category. We think that that needs to be looked at and that there probably needs to be a separate category for palliative care funding. We also need to look at activity based funding and we need to ensure that it deals with the complexities of palliative care. In some cases we are finding that palliative care funding is getting reduced and not getting adequate support and funding that it needs.

One of the things that we heard very clearly is that people need access to information. We heard so many accounts where people did not know where to go in a crisis situation to be able to find out about how they can get support, either for themselves or their loved one. That needs to be clear. There needs to be more accessible information. Websites need to be clear about where you can get information. There needs to be education and training across the board of healthcare professionals and of carers, and also education of the community.

In particular, we also make a recommendation around the need for case management. People explained to us that, when they are trying to make decisions in quite desperate and crisis situations, they do not know where to go to and they do not know how to arrange the care. In fact, they are not in a position to be able to make some of those decisions without that information, so case management would help. We also recommend the need for case management. As I said, we need to look at training. We have talked about equipment, we have talked about funding for community care and looking at HACC—Home and Community Care—and the possibility of being able to fund palliative care out of that.

We also talk about the specific needs for specific communities and culturally appropriate delivery of services to Aboriginal and Torres Strait Islander communities and what palliative care means for them. We talk about the need for CALD communities, for the needs of the LGBTI communities and for children. We really do need a national conversation around palliative care. We have made 38 recommendations. I commend this report to the Senate. I thank everybody for their involvement. Once again, I thank the secretariat for their support. As always, they have produced outstanding work in a pressurised situation. I commend the report to the Senate.