Senate debates

Wednesday, 22 June 2011

Matters of Public Interest

Palliative Care

12:59 pm

Photo of Sue BoyceSue Boyce (Queensland, Liberal Party) Share this | | Hansard source

I want to talk today about a couple of topics that I do not think we discuss often enough. They are the topics of death and pain. The Palliative Care Association of Australia had its conference in this very building earlier this month and their campaign slogan for this year is 'Let's chat about dying'. It is a confronting slogan and I have been quite amused sometimes at the depth of concern it has raised with others. Nevertheless, we do need to chat more about dying. It is something we do not want to talk about. We also do not bother, because we do not talk about it, to fund or support quality modern end-of-life care in Australia well. We do not seem to care about how people die and whether they are unsupported, alone, in pain or neglected.

I tabled in this house yesterday a petition signed by 4,180 Australians who do care. The petition was designed to honour those who need palliative care by making sure that every single Australian gets quality modern palliative care when they need it so that people can die with dignity. The thousands who have signed this petition supported a preamble which in part said that there is tremendous concern with the failure of government to properly fund and support the provision of modern quality palliative care to all Australians as an essential part of a modern healthcare system. Not only is death with dignity a fundamental human right—or it should be—but the provision of modern palliative care would dramatically reduce the number of people who, because of their health circumstances, see no other alternative than to seek assisted suicide.

The provision of quality modern palliative care should mean that no person dies in pain. Eighty-five per cent of Australians have been reported as supporting death with dignity but this should not just be about legalising euthanasia. It should be about ensuring that the aged, the sick and the disabled are not at risk of being seen simply as a burden to be deleted. If we as a society believe in the concept of death with dignity we should be investing first in quality palliative care not in encouraging suicide. To me it is alarming that we spend so much time, energy and money discussing euthanasia and assisted suicide instead of first focusing on the quality of care that we give people in Australia who are dying. It is disgraceful that this issue does not have a higher priority with the Labor government federally or their Queensland cousin. It is said that you can always tell what is important, what counts, by following the money and you can discover also who cares by following the quality of management. On both scores Labor governments at all levels fail.

I would like to look at the recent Commonwealth and Queensland Labor budgets in this case. What those calling for action on palliative care got from the Gillard-Swan budget was a promise which said:

The Government will improve access to palliative care by promoting better planning, delivery and coordination of health services and developing an integrated palliative care system.

There was, it is true, funding for about 70 beds a year. These were sub-acute beds and sub-acute beds are not actually necessarily used for palliative care. They have many other uses. So we have a share of 70 beds per year nationally as the government's response to what needs to be done. It is an absolute drop in the ocean. I was pleased to see that the Victorian government in fact invested just as much as the federal government—$34.3 million over three years is what the Victorian government has put into this issue.

In the Queensland budget palliative care hardly got a mention. There was an announcement of 10 new palliative care beds but what the budget forgot to mention was that 12 months ago the Queensland government stopped funding 10 palliative care beds to assist them in fixing their health payroll debacle. These beds were at Canossa, part of the palliative care training program in Queensland, run by the Royal Australasian College of Physicians, so they were, in fact, assisting doctors everywhere in how to undertake palliative care. So we get 10 new beds, but shame about 10 that they got rid of last year. The result in Queensland is a zero result for palliative care. They saved a whole $1.8 million, believe it or not, by cutting the Canossa program.

Palliative Care Australia recommends that 6.7 palliative care beds per 100,000 population is what this country needs now. This is a number that will probably increase as the population ages. What we got here was a promise from the Gillard government and zero from the other government. The Minister for Mental Health and Ageing, Mark Butler, recently announced $3 million in funding to help state governments pay for equipment loans that are given to patients who need specialised equipment when being cared for at home. Again the only problem with that was that the Queensland government terminated their funding for specialised equipment in their previous budget. Once again it is about not even maintaining the status quo but trying to.

I was at a function at the weekend held by the Motor Neurone Disease Association of Australia. They made the point to me that, with current waiting times to get specialised equipment under the government's medical aids subsidy scheme, people with motor neurone disease often get equipment when they can no longer use it. Motor neurone disease, as some people may know, can progress quite slowly or quite quickly. There is no use providing a wheelchair to someone after two or three months if that person in that time has lost the ability to use the wheelchair. So even in this there is no sensitivity around how this is happening. It has been a complete policy failure by the federal government.

This is an issue we need to manage well. I commend the many organisations involved in the development of palliative care and chronic pain management for the work they do with the very little funding they receive. A strategy paper was released earlier this year by the Australian Pain Management Association. They made the point that one-third of older Australians live in chronic pain. These are not necessarily people who are going to die. They identified a huge number of gaps in the knowledge and the services that are available to Australians living with pain. Amongst those was the fact that there is inadequate pain relief for end of life care. Think about that sentence not just as a statement but in terms of what it would mean if it were a relative of yours who was experiencing inadequate pain care in their last days. It is shameful.

They also pointed out that another major gap was that there was too little pain management training for current medical, nursing and allied health staff. The effect of this is that a lot of postoperative and other hospital patients receive inadequate pain treatment. Think about if that were you or a relative.

As I said earlier, we need to deal with this issue now. In 1907, 45,000 people died in Australia and their mean age was 41. In 2008, 144,000 people died in Australia and their median age was 80.9. It is a growing issue and we need to address it. We have one of the highest life expectancies in the world and that brings with it higher rates of chronic disease, including cardiovascular and respiratory diseases. It is great for us to work on preventing these diseases, but right now we have people who are going to die of these diseases and, if we do not do it well, they are going to die painfully and their deaths will be poorly managed for themselves and their families.

When you ask most healthy Australians where they would like to die they nominate their home as their preference. The funding we currently have available does not allow that to happen very often at all. The statistics indicate that that is relatively uncommon. Only 16 per cent of people die at home—that is, they get to die where they want to die—20 per cent of people die in hospices and 10 per cent die in nursing homes. That leaves the majority of people, more than 50 per cent, dying in hospitals. Not only is this not what people want but it also places a very high cost burden on our health system and results in a poorer quality of death, particularly, as I pointed out before, given there is so little training going on in the area of pain management.

There are numerous opportunities for improvement through training, revising the funding instruments and working towards the integration of service provision. I was stunned when I asked the Department of Health and Ageing during estimates recently how many palliative care beds there were in Australia to receive the answer that, firstly, they did not know because it was a state issue and, secondly, no-one talked about 'palliative care beds'; they talked about 'palliative care hours'. Palliative care hours might be what someone is measuring, but I can assure you that even the Queensland state budget uses the term 'palliative care beds', not 'palliative care hours'. How the heck can we talk about integration of these services when we cannot decide what term we should use to get linkage between the federal government and the states on these issues?

The petition, apart from calling for better funding and training, said we should create the procedures, education and funding needed to make palliative care a fundamental part of our national healthcare system and ensure the states address the chronic underfunding. We have done nothing to make it a fundamental part of our healthcare system. We also suggested that, as a matter of urgency, end of life care should be made a basic competency for aged-care workers. Aged-care worker education and ongoing training should be a core part of that. We also called for the integration of the national palliative care standards into the aged-care accreditation standards. Again, how can we talk about an integrated system when we do not integrate palliative care into the aged-care system?

The petition also says we need to create and fund a campaign to educate the public about the role of palliative care in the healthcare system and its contribution to the quality of life and death. This is becoming an urgent issue. I appreciate that death and pain are not topics people want to talk about, but they are topics we must talk about if we are to have a system that allows us to feel the deaths of our relatives and our friends, all our loved ones, occur in a dignified way. Nurse Jennifer Rowe and Ms Geraldine Reardon from Roma, who signed the petition, said:

We in rural South-West Queensland are happy to forward to you 652 original signatures collected primarily from the residents of Roma, Wallumbilla, Injune, Mitchell and Surat. We sincerely hope that the strength shown in support of the petition assists in the Australian Government finally addressing the call in recognising palliative care as part of the health care system.