Amanda Rishworth (Kingston, Australian Labor Party, Shadow Parliamentary Secretary for Health) Share this | Link to this | Hansard source

I move:

That this House:

(1)   notes that National Palliative Care Week is being held between 25 May and 31 May, with this year’s theme being Palliative care everyone’s business: let’s work together;

(2)   recognises that with an ageing population in Australia the demand on palliative care services will increase, while also noting that palliative care is required by people of all ages;

(3)   acknowledges:

(a)   that providing high quality palliative care in a range of settings including in the home is critical to ensuring that patients and their carers have their wishes respected; and

(b)   the important role of the health workforce, trained volunteers and all those who are involved in delivering quality palliative care; and

(4)   calls on the Government to:

(a)   increase community awareness and understanding about palliative care and the importance of advance care planning; and

(b)   ensure adequate funding for palliative care services through both commonwealth and state and territory agreements, as well as through the National Palliative Care Program.

This motion is very important and I am pleased to have this opportunity today to talk about palliative care and its critical importance to Australia. The first point of the motion notes that last week was National Palliative Care Week. I joined with a lot of colleagues, including the member for Forrest, in a wonderful event held in the Great Hall of Parliament House. We had some really wonderful speakers shining a light on the importance of palliative care. The theme for the week was that palliative care should be everyone's business. That is an important element and it is the reason I rise to speak about this today.

The second point of the motion recognises that more Australians are going to need access to high-quality palliative care services because our nation is growing older and living longer. We want to be able to die with dignity and to choose where we spend the final weeks of our lives. There are many people who want to die in their own home and this motion acknowledges their desire. Worryingly, research by Palliative Care Australia found that only one in 20 Australians has an advanced care plan that outlines their end-of-life wishes. As I outlined in the five points of this motion, the government needs to do more to raise awareness about the importance of advanced care planning. National Palliative Care Week was also a good opportunity to celebrate the fantastic work of those who provide palliative care—the GPs, nurses, allied health professionals and trained volunteers. They are all doing a tremendous job and we should recognise this fact.

As our population ages, the demand for palliative care will increase and the pressure on these front-line services to deliver good, high-quality palliative care will be immense. We need to make sure that we are listening to those around the world who are putting this at the forefront. On 21 May the World Health Assembly adopted its first ever palliative care resolution on the integration of hospice and palliative care into national health services. This requires that we ensure that palliative care is included in national health policies. It is vitally important that palliative care is not seen as just an add-on but as an integral part of our healthcare system. The resolution also calls for palliative care to be part of the curricula for all health professionals. Health professionals play a key part in delivering dignified end-of-life care and that was one thing that came through very clearly at the breakfast: when a health professional has a deep understanding of what high-quality palliative care is about the families, and indeed the individual needing palliative care, had a much better experience. Ensuring that it is known not just to a select group of health professionals who understand this area—that it is wide-ranging—is really important.

We need to prepare the whole health workforce for delivering palliative care to ensure that Australians are given a high-quality end-of-life service. Palliative care is often focused on older Australians and, while that is where the great demand is, I do not think we can forget that palliative care is also needed by young people. We heard, at the breakfast, a brave mother who stood up and talked about her young boy who had needed palliative care for 17 years. That is really important, and it is also recognised in the motion. We need our government to invest to ensure that each and every health professional receives palliative care training.

The resolution also highlights the issue of access to essential medicines, particularly strong pain medications. Earlier this year the Worldwide Palliative Care Alliance, with the World Health Organisation, published the First Global Atlas of Palliative Care at the End of Life. The report found that 80 per cent of countries globally have low, or very restricted, access to strong pain medications—which means millions of people are dying in pain or distress. This issue is particularly prevalent in rural and regional Australia where a lot of care is delivered by doctors who may not have the necessary experience. We need to support our doctors in rural and regional areas, as well as our nurses and other health professionals. This motion is a really important contribution. I commend the motion to the House.

Ian Goodenough (Moore, Liberal Party) Share this | Link to this | Hansard source

Is the motion seconded?

Jill Hall (Shortland, Australian Labor Party) Share this | Link to this | Hansard source

I second the motion and reserve my right to speak.

Nola Marino (Forrest, Liberal Party) Share this | Link to this | Hansard source

I can reassure the member for Kingston, who moved this motion, that palliative care is an important part of the government's healthcare agenda. I am sure that she and other members would be particularly pleased to see the $52 million that the government announced during National Palliative Care Week to improve palliative care services and training. While I am here I want to acknowledge the work of the board and CEO of Palliative Care Australia and congratulate them on the work they do, particularly in raising the awareness of palliative care, as we saw, through National Palliative Care Week.

The slogan—and it is not just a slogan—is: 'Palliative care is everyone's business: let's work together.' I would like to mention in my contribution today two people who have had firsthand experience in recent times, two people that I was very close to, who are no longer with us but who lived a great quality of life due to the care they received from palliative care professionals—Kaye Sales, a lady in my electorate who was the face of palliative care launched last week in the wonderful video, and Gail Catalano. They were two people who were very close to me. I had the fortunate experience to be with them in their last days and they were very grateful recipients of a life that was assisted by palliative care.

The 25 per cent increase into palliative care services and training will help to improve and support education and training opportunities in palliative care for health professionals and promote the importance of advanced care planning. I have spoken about this previously in this place. It is very important that we all have an advanced care plan so that our wishes and our values and our choices are respected. We know that less than one per cent of Australians over 70 actually have an advanced care plan directive in place. It lets our loved ones and our doctors and health professionals know about the level of care and quality of life that we would like to have if we are no longer able to make those decisions on our own. It is a conversation that we need to have with our families, and it is very difficult.

One of the speakers on the day at the launch of National Palliative Care Week was Dr Sarah Winch. She said:

Dying shouldn't be left to chance. Sometimes after a catastrophic diagnosis that leaves you feeling flattened and powerless—you can assume control. When we feel like all hope is gone a new hope emerges; a 'good' death according to our wishes and beliefs.

She went on:

Each and every Australian needs a plan to die—a plan that sets out what you want and guides your loved ones and health care professionals.

The things that she recommended that we think about were: what life means to me; what a good death is; a 'bucket list' of things that you want to do and things that you never want to do again; how to build a support crew; how to write down a care wish list; where you would like to be; the legalities; the cultural and religious requirements to communicate; going to what you want and how to get it to help you resolve your care and treatment issues. She said, very rightly, that facing death is never easy, but that we have world class health and palliative care services available in Australia and bringing them together is important. She said:

The most powerful thing we can do is make a clear plan that simply states our wishes to enable those caring for us to follow them through when the time comes.

I did have those very clear indications particularly from the lady who was my cousin, Gail Catalano. She left us in no doubt as to what she wanted in those last days. One of the most important things, as her very close relative helping to make those things happen, was knowing what she wanted, how she wanted it and making sure that she got her wishes so that she was left able to live in the way that she wanted to until she died. That was the greatest gift, along with the gift we had of sharing those final days and weeks and months and being able to make sure that she had the things that made her happy right up until the end.

We will make sure that general practitioners, medical specialists and allied health professionals and nurses who give their time—and they are such wonderful people; I cannot speak highly enough of those—and provide the palliative care and really do care about the people they manage at this time are acknowledged.

Jill Hall (Shortland, Australian Labor Party) Share this | Link to this | Hansard source

I would like to congratulate the member for Kingston for bringing this very important motion to the parliament and acknowledge that last week was Palliative Care Week and that the theme was: 'Palliative care is everyone's business: let's work together'.

The Shortland electorate is an older electorate, one of the oldest electorates in the country, and the need for palliative care services is great. In saying that, I do not wish to leave out those young people who also need palliative care. In the Hunter we have had a very special program that was built with the assistance of so many parents who had lost their children. There is a very good palliative care program there where support is offered to parents and families who are facing the loss of a child, which is exceptionally hard. As I mentioned, palliative care is imperative for people in the last days of their life. Only one in 20 people have an advanced care plan. I will be encouraging people in my electorate to prepare such a plan.

Palliative Care Week celebrated the work of people who work in palliative care and the quality care that these people provide to people who have a limited life, their families and their carers. I have been able to see this happen on the ground in my electorate. I have seen the role that nurses, GPs, specialists, allied health professionals, volunteers and family carers play.

Last year, unfortunately, I lost a very dear friend—the former member for Swansea, John Bowman. He was diagnosed with gallbladder cancer. He used palliative care services. Initially he had someone from the palliative care team visit and support him in his home but at the very end he went to the hospice at the Mater hospital in Newcastle. I must put on record the fantastic work that the Mater hospital does and the fantastic work that the palliative care team in the Hunter does. He was provided all the support anyone could wish for over the last days of his life. He was able to plan how he wished his last days to be spent. This was because we have such a strong palliative care team in the Hunter.

I would like to put on the record my support for Marion McAndrew OAM, who was instrumental in setting up the palliative care team that works out of the Mater in the Hunter. She is very dedicated to making sure the end of life treatment and support of the person is exactly how it should be.

Another close friend, Tony Dybell, had it a little differently to my good friend Don. His wife, Vera, had ovarian cancer. She stayed at home until the last moment with the support of the palliative care team. She was able to die in her own bed in the arms of her own family. This is what palliative care delivers to people.

There are unsung heroes who support Australians through the end stage of their life. There is one certainty in life and that is that eventually everybody will die. For those people who know in advance that they have a limited life, it is very important that they put in place a plan and that they work towards ensuring that the end of their life is a fantastic experience and one that carers, friends and families can share with them rather than it being an alienating process. I congratulate everybody involved with palliative care within the community.

Karen Andrews (McPherson, Liberal Party) Share this | Link to this | Hansard source

I am pleased to support this motion by the member for Kingston. Palliative care is the area of health care that is possibly the least discussed and least recognised and yet the one that has the most impact on families at a very stressful and emotional time. National Palliative Care Week, which finished on Saturday, was an opportunity to talk about the role of palliative care and the incredible job that those who work in palliative care do. The theme of this week was: let's work together. It is great that we can come together in this place from across the political spectrum to agree on the need for more public awareness of palliative care.

We have had a lot of debate and discussion recently about the need to address the challenges that come with an ageing population. The fact is that between 2010 and 2050 the number of people aged 65 to 84 will more than double, and the number of those aged 85 will more than quadruple. It stands to reason that the need for palliative care services will also increase in the coming decades.

I particularly want to recognise, as part (3)(b) of this motion does, those dedicated healthcare workers and volunteers who choose to work in palliative care. Just about every other aspect of health care is aimed at recovery and helping an individual to get well. An intrinsic satisfaction of the job must be seeing and assisting in that recovery process. Palliative care workers do not have the satisfaction of that recovery process, but they do have a vitally important job in relieving suffering, in helping individuals and their families to deal with their circumstances and start the journey through grief, and in ensuring that their patients leave this world in as peaceful and as dignified a manner as possible.

I was very pleased to note that last Thursday the Assistant Minister for Health announced that the federal government will provide $52 million over three years to improve palliative care services and training. This funding is in addition to the support the Australian government provides to states and territories to operate palliative care services, the subsidies for palliative care medicines under the Pharmaceutical Benefits Scheme and palliative care consultations under the Medical Benefits Scheme. While the state and territory governments are responsible for the delivery of palliative care services, the funding we have announced will continue to support education and training opportunities in palliative care for health professionals and to promote the importance of advance care planning.

I want to take some time in this debate to discuss advance care planning, which is mentioned in part (4)(a) of this motion. It is important that we discuss the value of planning when it comes to making our wishes and intentions clear. Less than one per cent of Australians over 70 have an advance care directive in place. An advance care directive lets your loved ones, your doctor and other health professionals know about the level of care and the quality of life you would like to have if you are no longer able to make those decisions on your own. It is also very difficult and at times heart-wrenching for our loved ones to have the responsibility of making decisions on our behalf if we have not let them know how we feel and what we would want. The Palliative Care Australia website, www.palliativecare.org.au, has a section on advance care planning, including a number of resources and links to help people consider their options.

Finally, I want to take a moment to recognise the charity Queensland Kids, which I understand is very close to its aim of establishing a children's hospice and respite care centre in Brisbane, to be called Hummingbird House. Hummingbird House will operate as an eight-bed, 24/7 medical facility including physician and nursing support, pain and symptom management, both scheduled and emergency respite care and end-of-life care. The government has made a commitment of $5.5 million to help fund the facility, and the state government is also providing funding, but it is largely through the efforts of the dedicated founders of Queensland Kids, Paul and Gabrielle Quilliam, that this project will become a reality.

It is incredible that there are only two children's respite care and hospice facilities in Australia, located in Sydney and Melbourne. There are 3,700 Queensland families with children who have a life-limiting condition. As a parent, I cannot imagine a more difficult, stressful or emotional situation to have to deal with. A dedicated facility is desperately needed and will provide a vital service to these families. Fundraising for Hummingbird House is in full swing, and I wish Queensland Kids every success and encourage anyone listening to this debate to donate to this worthy cause.

I am pleased to be part of a government that recognises the importance of palliative care and is taking steps to ensure that spending on vital health services is sustainable in the future.

Stephen Jones (Throsby, Australian Labor Party, Shadow Parliamentary Secretary for Regional Development and Infrastructure) Share this | Link to this | Hansard source

I am delighted to speak on this motion. It gives us the opportunity to recognise the professionals, the carers and the families who are involved in palliative care. I note in passing that the week just past was National Palliative Care Week. This is also the opportunity to talk, as a number of speakers have, about the importance of having in place an advance care plan, and I will say something about that in a moment. Thirdly, it gives me the opportunity to talk about and promote the great work of an organisation in my electorate: Southern Highlands Community Hospice.

Australia's population is ageing and this is due to increasing life expectancy and a sustained low fertility following the postwar baby boom. Palliative care is not just about ageing, as previous speakers have said, but the fact that Australians are living longer has made us all critically aware of the importance of palliative care and end of life issues. In 1901 older people constituted just four per cent of Australia's population. This ballooned 70 and 80 years later to 14 per cent of the population, and that percentage is increasing every year. For those aged 85 and over, it has almost tripled from 0.5 per cent to nearly 2 per cent of the population. This has focused our attention on the important policy issues that we need to address, which started with the importance of occupational superannuation in ensuring that we have decent retirement incomes. I take the view that the former Labor government's Living Longer Living Better package was the first time a federal government had grasped the nettle on what was needed in healthcare policy.

Half of all palliative care patients are under the age of 75 and 12 per cent of patients are under the age of 55. This underscores the point that I made earlier that it is not just an ageing issue. We know there are gaps in the provision of palliative care services. The gaps are more prevalent for Indigenous Australians and those who are living in rural and regional areas, such as my own, where there are high levels of chronic diseases and much less provision of needed services. It is also worth noting that we have fewer cancer care facilities in those areas as well, and we know that cancer accounts for six out of every 10 admissions for palliative care. We have a policy challenge and we know we need to do more to look after people requiring palliative care, particularly in rural and regional Australia. We know that over 80 per cent of the existing services are in metropolitan areas and that people in regional and rural areas have the same, if not greater, needs for palliative care services.

I was very pleased to see that this year the World Health Organisation passed its first palliative care motion which called for palliative care to be integrated into national health care services, including Australia's. I think that is the right direction. Other speakers have pointed out the importance of people having in place a care plan. It is of great concern that in a recent survey conducted in conjunction with national Palliative Care Week less than five per cent of Australians responding to that survey have such plan.

In my own electorate the community is filling the gap. They look at the great work of Katharine House that has been in operation for 25 years in the UK. They saw a gap in their community and they are campaigning to put in place a voluntary community hospice. They have raised over $1 million so far and they aim to have 200 to 300 volunteers to provide services to palliative care patients in the Southern Highlands. In the time I have left I want to pay tribute to the great volunteers and fundraisers who are making this dream possible.

Ken Wyatt (Hasluck, Liberal Party) Share this | Link to this | Hansard source

I wish to associate myself with the comments of all members on the motion proposed by the member for Kingston. It is interesting in life that we often do not think of death or the stages of dying until we are impacted upon at the family level where it becomes personal. I spent a period of my life working for an undertaker and I lived on the premises, which meant that I was in constant contact with people who had lost family members. Often those people would seek your advice or counsel because they had gone through a stage of watching somebody in their family pass away through a death that was unkind or painful. In sharing their thoughts, in some cases their guilt and in some instances the joy at having lost a family member who had suffered pain, the thing that I heard about consistently was the workers and staff in hospitals or hospices, who provided a level of care that made the last stages of life much easier. The ones that were most rewarding were those who took a family member home to care for them themselves in a loving environment in which they focused on giving them options to do things within the home instead of being hospitalised.

Last week, at the launch of National Palliative Care Week, that came back to me through its theme 'Palliative care is everyone's business: let's work together'. If we take that concept truly, we as families should be at every phase and stage of the life that exists of the person that we love. I listened to Peter King, who was interviewed by Trish Crossing, formerly an ABC radio personality. She asked him some questions about the stage of his wife's life in which cared for her at home. The thing that was enjoyable in that moment of his sharing of his pain, was the joy that he gave his wife through her being in surroundings that she had been familiar with. She had access to her children 24-7. She was in her home environment with external support. The quality of the time that they had together was an extremely powerful message that resonated with me, because in communities I have been associated with over the years I have seen where families come together in times of toughness but also in times of love. Palliative care plays an important and critical role in the lives of all of those who lose somebody early.

My breadth of knowledge became even greater, having had the funeral parlour experience for 4½ years, when I worked in health, where we looked at models of care for people needing palliative care. In all of those discussions, you centred on the person and looked at how you brought services together around that person. The problem in medical arenas and the health field is that sometimes people become an object for treatment. That has changed in recent times because of the very nature and the caring attitude of medical and allied health staff who provide multidisciplinary teams. I hope that, in the future, Australians will start to think about their death, about what it is that they want in their final stages of life, because it gives an indication to those around them what it is that you hope and desire to have happen. I know that when I come towards that stage of my life—I have already worked through in my mind what I want and I know the support that I will require—I want to enjoy that stage of my life as it ends, where I have quality time with my family, my wife, and those that I love and care for, because it should be celebrated like a birth. We celebrate a birth, but we never celebrate the life of somebody who is about to leave us. We should in the framework of palliative care provide the optimum opportunities for those who experience that journey together as families, friends and those we care for.

Debate adjourned.