Wednesday, 10 October 2012
Community Affairs References Committee; Report
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.
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.
Every committee hearing that we attend we learn more about people who want to talk with us about their individual issues, and through this particular inquiry over a number of meetings across several states we have so many memories from people who came to tell us about their need. I just want to quote one woman who I think stayed with all of us—Kim from Victoria. This quote sums up to me so much about the spirit of people and their needs.
We were talking about this one day and a nurse said to me, 'If you had a choice, would you prefer to die at home or would you prefer to die in hospital?'
A question that people get asked.
I said, 'If I had a choice, I would prefer to die at home.'
Then she went on to say that she had thought about what was going to happen to her and that if anyone had asked her a few months ago was she going to die, she would have said, 'There's a fair chance of that!' Then she got a diagnosis. She had a fair idea that she was going to die someday. The only difference between her dying someday and dying soon was her diagnosis.
I think that was one of the key messages for all of us in this inquiry.
This issue belongs to all of us, yet one of the key aspects learnt from working with people who are interested in caring about palliative care is that so many of us do not want to talk about it. The major focus of this report is to get people to have the conversation. We have 38 recommendations from the inquiry and they are all important, every single one of them. We did not write a frivolous one. Everyone of them is looking at a need for funding, for training, for access or for coordination but the No. 1 item in the process is that all of us need to think about what we want towards the end of our lives, no matter which way the end happens.
One of the sad things about this inquiry is that we had no success in getting any media coverage. Sometimes when we bring down inquiries for our committee we have lots of people around and lots of interest shown and lots of cameras present and lots of radio interviews. At no stage did anyone ring up and ask: 'What's this inquiry about? Are you coming to talk to us? You've got 23 witnesses who have said they want to come and talk with you.' None of the media picked it up at all. So one of the key things for me out of this inquiry is this: please get the message out in the wider community. Let us talk about the issue because it belongs to all of us.
I particularly want to commend the work of Palliative Care Australia. They drove this inquiry. They were the ones who haunted our offices and said: 'This is what's happening in our country. We all need to understand the reality of palliative care.' It worked, because when you sit down and have these discussions you know that there is someone in your family or someone in your neighbourhood who is working through these issues and that one day it will be you too. One of the chapters I refer people to—and I think we will be talking about this a number of times in days to come—is the one on advanced care planning. This chapter is so important because we make recommendations about what we should do to coordinate this across the country so that your choice will be what will happen to you when you need it. There are all kinds of comments made about people who have not had their choices respected. That makes the sorrow and the pain greater. We all have the ability to make a choice about what we need, and this is one of the areas in which we can do that. So it is about a simple way of understanding the way advanced care planning can operate, its legal status and the way it will work across state boundaries—to me that jumped out from the process that we had. At the moment it is a mess. It is very uncertain how it will be handled. People know about it but the first question asked is not about that signal point, that this is what the person wants—and we are asking that that be turned around in the future.
I also express the wishes that Senator Siewert expressed about our secretariat members. We take them for granted because they always deliver. We should never do that. The secretariat worked with us through the evidence, some of which was harrowing. All of it was ennobling. Every single witness was ennobling in terms of their own experience. But while we were there as senators every single one of our secretariat members was being touched by it and I think we need to acknowledge that. The quality of the report speaks for itself. People's stories are in it and their interests are in it, so please follow it all up. We, as a committee and as a parliament, will need to follow up the recommendations about funding, which we will talk about later. But I want to acknowledge here Kim, her partner, all the people who came to talk to us and the wonderful workers across the program in Australia. Palliative care is an important issue, one that should have more focus on it. I think the No. 1 issue arising from this report is that we take it seriously.
I rise to support the comments of Senator Siewert and Senator Moore in relation to this Community Affairs References Committee report and say that it was very important for the senators participating in this inquiry to make sure that our report was one that was agreed to across party lines. Whilst there were some minor issues on which we made some changes, it was really good that we were able to deliver a report that certainly reflects and does credit to, as Senator Moore said, the evidence that was given to us in the various hearings. Also, it respected the difficulty that many encountered in giving evidence that was so personal. When one talks about dying it is never easy, particularly when one talks about how one wants to die and is facing those issues that many of us do not want to talk about as we think that we are going to go on and on and on. The story of Kim and the story of so many others demonstrated that while we are here today we may not be here tomorrow and how we exit this life is certainly very confronting for many.
I would like to touch on a couple of areas in relation to this. As shadow minister for ageing, obviously my interest was most especially from the ageing perspective and, as Senator Siewert correctly said, whilst most of the palliative care in Australia is delivered predominantly in an ageing setting we cannot forget the young people receiving it. Probably the hardest evidence that we received was from parents of young children and I think Senator Smith will probably say something more about those young children.
I would like to particularly mention a couple of recommendations that were in the Productivity Commission Caring for older Australians report and on which I particularly want to focus from the ageing perspective. Firstly, one of the Productivity Commission recommendations was that the Australian government should ensure that residential and community care providers receive appropriate payments for delivering palliative and end-of-life care and that those payments should form part of an assessed entitlement determined by various processes. Secondly, there was the recommendation that talked about how providers of aged-care services should have staff trained to be able to discuss and put in place advanced care directives, so very much picking up those points made here about advanced care. So I did spend quite a bit of time talking about and exploring the possibility of how an entitlements system could operate in a palliative care setting. Certainly palliative care is very complex and this became very clear throughout the course of this inquiry.
In particular, Senator Moore acknowledged the work of Palliative Care Australia. I acknowledge the presence in the gallery of Dr Yvonne Luxford, the Chief Executive Officer of Palliative Care Australia. As Senator Moore correctly said, they very much drove this inquiry.
In terms of the Productivity Commission and its issues about entitlement, I am very pleased that we were able to explore that in this inquiry and look at the practical way that, under an entitlement system, palliative care could be rolled out and most especially in the home. It became very clear to me that people want to die in their own home. As we look at changes to the aged-care system, we should look at ways that we can facilitate that. Certainly the evidence that was given to us indicated that palliative care can be rolled out quite effectively under an entitlement system.
The other aspect was advanced care planning. I would like to touch just briefly on the cultural reluctance to discuss death and dying. It will be very important if we are going to effectively do advanced care planning in Australia to meet the barriers that do exist in raising awareness, especially in special needs groups, and meeting those cultural barriers which do exist. I was very proud to be part of this inquiry and I commend the report to the Senate.
I also want to speak on the report of the Community Affairs References Committee into palliative care in Australia. The report is most definitely a timely reminder of the importance of palliative care in the Australian community. There are a number of elements of palliative care that I would particularly like to draw to the attention of the Senate. The first is its commitment and the place it plays in affirming life and regarding dying as a normal process and its place in recognising the integration of psychological and spiritual aspect of patient care, but also its place in offering a support system to help patients live as actively as possible until death and in offering a support system to help the family cope during the patient's illness and in their own bereavement.
Much attention has been given to the palliative care needs of older and ageing Australians and those enduring the debilitating effects of various cancers and their treatments. This is a powerful demonstration of the value we put not just on human life but also on living life. I would like to use the limited time available to me to draw attention to the palliative care needs of children and adolescents. I am pleased the report contains special reference to the palliative care needs of this special part of our community. On a personal level, it has been empowering to understand more about the need for and availability of special palliative care services for babies, both perinatal and neonatal. Like others, I am concerned about the lack of specialist perinatal and neonatal palliative care in Australia.
The committee was presented with evidence of several case studies which demonstrated the urgent need for perinatal palliative care. The final report details concerns of one professional about the misunderstanding, miscommunication, suspicion and neglect from medical professionals, specifically with regard to perinatal and neonatal palliative care needs. I want to specifically acknowledge the contribution of Professor Wilkinson, the Associate Professor of Neonatal Medicine and Bioethics at the University of South Australia. I want to share some comments made by Professor Wilkinson to the inquiry which demonstrate the significance of this all too forgotten area of palliative care need. In his contribution, he said:
Every year in Australia there are approximately 1,200 infants who die before their first birthday, most in the first days or weeks of life. Some of these infants die suddenly and without warning but for about two-thirds their death is expected or anticipated and those caring for the infant have recognised that they are unable or unlikely to survive. There are two main groups of infants. One group of infants have received life support and intensive treatments but have deteriorated despite treatment. For example, in the neonatal intensive care unit where I work there are a small number of babies who had been born extremely prematurely who have then developed very serious complications of being born so early and whose parents now face the difficult prospect of losing them after weeks or even months of treatment in hospital. There is a second group of babies who have been diagnosed in the womb as having a serious congenital malformation so serious that it is likely to lead them to dying both or in the newborn period. Their parents face the heartbreaking choice of either terminating the pregnancy or continuing it but in the prospect of spending only a short time with their baby.
I am pleased to say Professor Wilkinson's evidence also provides and identifies significant opportunity and hope for the needs of these families with unborn and recently born children. People are welcome to visit the Hansard to look at what I thought was a very hopeful contribution.
The committee's report contains a specific recommendation which addresses the special but neglected needs of neonatal and perinatal palliative care. The committee has recommended that the Commonwealth government give increased attention to the need for improved research, education and services to support the perinatal and neonatal palliative care needs of health professionals, pregnant women and their families and newborn infants.
Finally, I want to like pay very special recognition and appreciation to the courage and advocacy of Mrs Fiona Engwirda and Mr Richard Burnet who spoke of their very personal and individual experiences in identifying and securing palliative care needs for their young children. Again, their contribution has gone a very long way to building a better understanding of the palliative care needs of our community. As a result of the evidence presented, I am pleased that the committee has recommended that government give careful consideration to the special circumstances of families caring for terminally ill children when considering future changes to the eligibility criteria of the carer allowance and the childcare rebate. This inquiry was my first full inquiry since I was appointed to the Senate Community Affairs References Committee and I would just like to acknowledge the work of our chairman, Senator Siewert, the dedication and enthusiasm of my colleagues and the work of the secretariat. I seek leave to continue my remarks.
Leave granted; debate adjourned.