Sue Boyce (Queensland, Liberal Party) Share this | Link to this | Hansard source

Tonight I want to speak about National Palliative Care Week, which I acknowledge that Senator Bilyk mentioned earlier this week. National Palliative Care Week begins next week, 25 to 31 May, with the slogan, as all weeks have these days, of 'palliative care is everyone's business—let's work together'.

This year, Palliative Care Australia is celebrating the people who work in palliative care and the important role they play in ensuring quality care at the end of a person's life. They are also aiming this year to educate the community about all the different people, all the different professions and non-professionals who are involved in palliative care. Indeed, there will be an education day at Parliament House on Thursday, 29 May.

Death and palliative care are something of taboo topics in our society. Both death and palliative care are not discussed as much as they should be, so much so that there seems to be a preference for debating and advocating euthanasia instead. Perhaps that is because we have not fully come to terms with that middle ground between the binaries of life and death. And given the accounts I have heard from people about the suffering their loved ones have endured, I can understand that people would think euthanasia is a better option. It seems to me that, in many cases, those accounts are more about our poor or non-existent palliative care and that we need do something for all of our people to fix those problems with palliative care before we continue any sort of debate on the topic of euthanasia.

The process of dying can be very confusing and it is an uncertain time. For family and friends, there are overwhelming options and potential outcomes. A person receiving palliative care is likely to have an active, progressive and far advanced disease with little or no prospect of a cure and irrespective of age. The aim is to achieve the best possible quality of life for all those people—irrespective of whether they are children or elderly—for the people who care for them and for their families. This area of healthcare aims to provide relief from pain and the many other distressing symptoms that can accompany the end of life. Palliative care is about affirming life, and it regards dying as a normal process. It does not set out to hasten or postpone death. It offers a support system to help patients live as actively as possible until death, and it works to address the needs of their families. Palliative care deserves to have a lot more public conversation. As I said earlier, Palliative Care Week affirms that palliative care really is everyone's business.

I note that my colleague Senator Moore is in the chamber tonight. The Senate Community Affairs References Committee, of which we are both members, in its inquiry into palliative care, found that traditionally palliative care had been associated with caring for cancer patients—oncology was the first thing that people thought about. But as our population ages and life expectancy increases, so too the instance of the many life-limiting illnesses increases, including dementia and cardiovascular and respiratory diseases. These chronic and generally incurable illnesses often have a much longer disease trajectory than cancer, yet they similarly require the provision of palliative care services.

In recent years the broadening of patient groups accessing palliative care has begun to be recognised by policymakers and to some extent, somewhat belatedly, by the health and medical professions overall. In the future there will be a massive increase in demand for quality and effective palliative care services. Our Community Affairs References Committee inquiry heard that the majority of people, when asked, would prefer to die at home than in a hospital setting, yet only 20 per cent of them currently have this wish granted. Dying at home requires that a lot of support services be in place; it requires that the family and friends also understand the needs of those dying and what they are likely to experience.

The Australian Institute of Health and Welfare, in a report that they produced last year, made the point that palliative care is currently provided in almost all settings where healthcare is provided, including neonatal units, paediatric services, acute hospitals, general practices, residential and community aged services, and generalist community services. Specialist palliative care services operate from a variety of settings, including specialist inpatient consultant services, specialist inpatient settings, hospices and community based special services. The majority of people who are candidates for palliative care are telling us that almost none of those places are where they want to be. Yet there continues to be the problem that people who require palliative care end up in acute hospital settings—the absolute wrong setting for them—where people do not understand their needs or, in many cases, cannot provide the services that they require. It is in the home—and in hospices when that is not possible—that we should be looking at caring for people who require palliative care. It should absolutely not under any circumstances be in acute hospitals. Not only is that not the place where people needing palliative care want to be and where their families want them to be; it is also absolutely the most expensive way to go about providing palliative care and, as I said, it is palliative care that does not meet the needs of anyone involved.

To illustrate the broadening of the palliative care spectrum—the people who now require help—according to a recent report by the Institute of Health and Welfare there were 5½ thousand palliative care separations in 2010-1011 and 16½ thousand of those people had died with cancer as the principal diagnosis. I should explain that a separation means leaving the hospital, irrespective of the reasons for which you leave. Hopefully some of those people went home for their last days.

The growing number of palliative care cases was also examined by the AIHW. They found that there was a 49 per cent increase in palliative care related separations between 2001-02 and 2010-11. This certainly shows a significant shift in palliative care and the beginning of a change in sentiment, with people actually understanding what palliative care should be, what the people receiving palliative care should want and what the family wants. But there is a lot more work to do.

Palliative Care Australia reported in January this year that more than 50 per cent of people who had recently lost a loved one had not discussed end-of-life care with them, nor were they confident that their loved one's end-of-life wishes were carried out. Furthermore, 70 per cent of Australians think we don't talk enough about death and dying. I presume the same people who undertake those surveys then immediately went out and began those conversations. It is interesting to note that while Palliative Care Australia has the slogan 'Palliative care is everyone's business', those figures of what people should do and what people actually do simply do not tie up. So we must continue to make the point that not only is good palliative care about meeting our international obligations but it is also about our parents and our children listening to our community and keeping in step with the sorts of attitudes that must prevail.