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.
