Nick Champion (Wakefield, Australian Labor Party) Share this | Link to this | Hansard source

I move:

That this House:

(1) notes that National Palliative Care Week (NPCW) runs from 24 to 30 May 2015; and

(2) encourages all Australians to use NPCW as a conversation starter, to get together with those close to them, celebrate life and talk about death, in particular the end of life decisions such as:

(a) how they want to be cared for;

(b) what values are important to them;

(c) what types of medical assistance they want to receive;

(d) whether they wish to be buried or cremated;

(e) where they want to pass away;

(f) whether they have appointed a power of attorney; and

(g) writing an advanced care plan.

National Palliative Care Week runs from Sunday 24 May to Saturday 30 May this year, and this year's theme is: 'Dying to talk: talking about dying won't kill you.' It seems to me that, in general—and it is a modern taboo rather than an old taboo—people are very reluctant to talk about their own mortality and their own deaths, and I think that most of us do not make the right arrangements for what is an inevitable part of life.

Over the last year I have spoken to a large number of organisations and individuals about palliative care—to many older Australians around the country and many other people on what is a bipartisan sort of issue. I have been to the Saint Vincent's Hospital in Melbourne and the one in Lismore. I have talked to Bill Silvester from Austin Health. I have talked to many families who are part of the Hospice@Home program that is being rolled out by the Hobart District Nursing Service in Tasmania. And, from all of those discussions and from the community forums I have held, I have found that people are actually quite interested in talking about not just the arrangements you might make when you are close to death but what your family and friends and you might do some time before that.

It seems to me that we do have to be better able to talk about it and better able to prepare for it as individuals, families and communities, because it is not something that you want to leave to chance. You do not want to leave your own wishes to chance. You certainly do not want to leave them in a will somewhere up in the attic. There is no point in your advanced care directive or your medical power of attorney being hidden away. You need them to be available at the time you need them, and you need your wishes to be observed.

When Labor was in government, one of the things we did do in Tasmania was to provide $60 million and a Better Access to Palliative Care trial, and Minister Plibersek at the time, now our deputy leader, put in place that very good program which I think gives us an indication of the way to go in the longer term as to how to fund palliative care. There was also funding for palliative care services as part of the National Partnership Agreement on Hospital and Health Workforce Reform.

Much of that work, I have to say, needs to be continued with and progressed, because there is a danger that it might fall apart under the current changes to health, and the cuts in particular. As state governments get more and more desperate about their budgets there is the tendency to pare everything back to hospital treatment. But, of course, the more we do in preventative health and the more we do outside of the hospital in terms of preparing palliative care services, both hospice and at-home services, the better the outcomes we get. As the Grattan Institute's very good report shows, having people die in institutions is a very costly affair. It is an intervention in people's lives that is often unnecessary, often in direct contradiction to their own desires. Most people, I think, would express the desire to die in their bed at home surrounded by friends and families. That is the common desire. Occasionally, people do have to be hospitalised or put in hospices. We do have to have those services available, too. But we want to do everything we can to give people the resources to plan effectively to die well.

I think this is an area that should be part of a bipartisan focus. I do not think it should be contested. The one thing that ruins partisanship is that we all have to cross this mortal divide—every single one of us. No matter how you vote, what your income is or what your station in life is, death is the great leveller, as Homer said in The Odyssey.

So, in National Palliative Care Week, we urge people to think about the end of their lives: how they want to be cared for, what values are important to you, what type of medical assistance you want to receive, whether you want to be buried or cremated, where you want to pass away—whether or not it is in a hospital—and, most importantly, have you done an advance care directive, a medical power of attorney and do your family know where those are? Make sure they are available. (Time expired)

Steve Irons (Swan, Liberal Party) Share this | Link to this | Hansard source

Is the motion seconded.

Andrew Nikolic (Bass, Liberal Party) Share this | Link to this | Hansard source

I second the motion. While the member for Wakefield and I can occasionally be on opposite sides of the policy debate, I thank him for raising this matter in the context of National Palliative Care Week, which runs from 24 to 30 May.

National Palliative Care Week is a regular reminder about the transient nature of life itself. It is a chance to reflect deeply on what is most important in life, human relationships with family and friends at its very core. It is an opportunity to appreciate the reality that human existence traverses a natural and consistent arc, marked by the enduring milestones of birth, life and death. It also reminds us that, in 2015, death need not be feared; and that all of us can help, and be helped by others, in the process of achieving as good and compassionate a death as possible.

In Tasmania one of the ways we are able to support this aspiration is through the Hospice at Home Program, delivered by The District Nurses, which the member for Wakefield mentioned, which successfully delivered 583 home palliative care packages last year. The growing need for home-based palliative care had been evident for a number of years and I am pleased to say that Tasmanian families now have access to professional support services at a difficult time for loved ones who want to die at home. Many of our people have successfully achieved their goal to remain at home at the end of their lives, which may not have been possible without this program. Many others are now able to achieve their wish of staying at home for as long as possible.

Support workers under the Hospice at Home program provide a range of care services and on-call help. The Hospice at Home program also provides equipment to help patients get home earlier after a hospital stay. More than 80 per cent of our Hospice at Home patients are under specialist palliative care services, and the program has brought together existing providers and access to extra help when clients need it.

Mine is one of those Tasmanian families that have had loved ones pass away in recent years, and each of their experiences has been different. Each individual had different perspectives on how their end-of-life journey would play out. Often, they transitioned responsibility for some, or even all, day-to-day matters to others, and were open to discussing with them in advance the nature and formal authority for their end-of-life care. These are big questions.

Again, my family has recently concluded one such discussion with a very close family member who is dying and who has embraced an open discussion with those who love her most. The sorts of things to explore are along the lines of what the member for Wakefield mentioned. Who is best placed to support you at the end of your life? How do you want to be remembered by those closest to you, and how might that remembrance be marked? What legal options do you have to support you to ensure that your intentions and wishes are actually fulfilled?

The medical questions are perhaps the most difficult but also of great significance. What type of medical assistance does someone want now, and do their wishes change if there is a sudden and irrecoverable deterioration in their health? Are they open to an advanced care plan enabling them to specifically detail the treatment they want if they become too ill to reflect their wishes? It is important to note that advanced care planning is not euthanasia but about people taking control and not leaving their future care to others and to chance.

Perhaps the most important thing about having these discussions in the first place is that such openness brings rewards: it supports a dying individual's peace of mind, it clarifies their actual as opposed to assumed intentions with their loved ones, it acts to diminish the burden on every individual as their faculties inevitably diminish and it helps to reduce the stress on other parties as a loved one approaches their end of life. Once commenced, the exact nature of the discussion is, again, unique for everyone, but such a discussion must be approached with the necessary balance of openness and sensitivity.

For all of these reasons, this is an important matter before the House today, and I therefore strongly lend my support to the motion of the member for Wakefield and encourage all Australians to keep the discussion going. That involvement will range from quiet reflection to active discussion to actually distilling and drafting our personal final intentions. In the end, these matters are far too important to be left to chance. I commend this motion to the House.

Shayne Neumann (Blair, Australian Labor Party, Shadow Minister for Indigenous Affairs) Share this | Link to this | Hansard source

I thank the member for Wakefield and shadow parliamentary secretary for putting forward this motion on National Palliative Care Week. I am pleased to speak in support of it. National Palliative Care Week is an opportunity for all of us to begin those necessary and sometimes difficult conversations with those whom we love about death, about life and about end-of-life decisions.

Some of the most difficult conversations I had when I was practising for more than 20 years as a lawyer were not in family law cases and not with criminal law charges against clients but in fact concerned wills and estates. It was very difficult to have those conversations with people, so I commend the member for Wakefield for raising this issue. This week provides an opportunity to celebrate life while accepting, recognising and planning for the inevitable.

In Shakespeare, Queen Gertrude attempts to comfort her grieving son, Hamlet, telling him:

Thou know’st ’tis common. All that lives must die,

Passing through nature to eternity.

All of know people who have died. All of us have grieved. We fail to discuss the type and extent of medical assistance we wish to receive. We fail to discuss where we wish to pass away. We often fail to do a will, fail to do a power of attorney, fail to formalise our wishes on advanced health directives.

I commend the Grattan Institute for its 2014 Dying well report on palliative care. It particularly caught my attention. It stated:

Most people prefer to die comfortably at home or in a home-like environment with minimal pain and suffering. They hope to be surrounded by friends and family and the care services they need. A good death meets the individual physical, psychological, social and spiritual needs of the dying person …

But often the obstacle in front of many people is the conversation they need to have. The hospital is a pressure cooker of an environment, but that is the place where most Australians seem to end up dying. The failure to properly plan for death means many of us die in hospitals or, indeed, in residential aged-care facilities. Fifty-four per cent of deaths of those over 65 years of age occur in a hospital and 32 per cent in a residential aged-care facility. The Grattan Institute reports in Dying well that only about 14 per cent of Australians who would prefer it actually die in their homes. It is about half the rate of comparable OECD countries including the United States, New Zealand, Ireland and France.

When Labor was in government we recognised that Australians needed to take better control of this decision making, so we funded, as the member for Wakefield said, a $54.95 million trial, 'Better Access to Palliative Care', which included $38 million to the hospital service in Hobart. The trial will help us determine what we do in relation to this area.

I want to also mention the Ipswich hospice in my electorate—a not-for-profit community owned organisation operating a palliative care facility in Ipswich, in the heart of town. For over 20 years, it has been providing exceptional palliative care and comfort to those terminally ill and their families in Ipswich and the West Moreton region. In 2013-14, there were 2,009 bed days, 86 admissions and 77 deaths at the seven-bed facility. Many hundreds of people were supported through their grief with the wonderful work done through Hilda's House, its neighbouring community centre. The hospice provides bereavement support as well as education to the community and medical professionals on palliative care, death and grieving.

Over 20 years, the hospice has been supported by a wonderful team of wonderful volunteers—183 as of last year—guided by a dedicated management committee. It has blossomed under the leadership of talented and committed directors. Jan Wilton, a talented and caring registered nurse with whom I had the privilege of serving on the local Health Community Council, served as the director of the hospice for many years. Jan was ably followed by Ros Holloway, a capable and caring person with whom I have enjoyed a friendship as we both attend the same church in Ipswich. In 2014, Ros passed the baton to Sandra Larkin, who will no doubt continue to grow and strengthen the hospice, which is supported by the business community and the meat workers union through regular payroll deductions directly to the hospice. I commend the union for their wonderful work and the hospice for the work they do.

I am very pleased to have been a longstanding supporter of the Ipswich hospice. I was bitterly disappointed, I must say, when the new government, through MYEFO, cut the $100,000 to the hospice that I had secured through the Liveable Communities program to enhance community care services—one of the first acts of the Abbott government. I commend the new member for Ipswich for securing $3.1 million in Queensland government funding for the hospice for the next three years and look forward to working with the hospice in Ipswich for many years to come. (Time expired)

Eric Hutchinson (Lyons, Liberal Party) Share this | Link to this | Hansard source

I rise in support of the motion moved by the member for Wakefield. Indeed, as has been mentioned, Palliative Care Week runs from 24 to 30 May. The theme this year is 'Dying to talk; talking about dying won't kill you'. Indeed, dying is a natural part of life. I think we are all very well aware of that. But it is important that we plan and prepare and normalise the conversations that occur around end-of-life. Palliative Care Australia wants to normalise death and dying. To do this, Australians need to feel more comfortable about talking about what their wishes and needs are as they approach end-of-life. Australians need to be comfortable and confident to ask for the care that they want. Indeed—and it has been mentioned by those on both sides—there is the wonderful work that is going on in a program known as hospice@HOME in my state of Tasmania. This is a program that is coordinated to give better access to palliative care for people particularly in Tasmania in what is a very dispersed population outside of Hobart and Launceston. This system is working particularly well.

There are three partners in this program: the DHHS, the Department of Health and Human Services; the Tasmanian Association of Hospice and Palliative Care; and the district nurses, as I mentioned, who deliver the clinical side of that. DHHS's role is to provide specialist positions in palliative care and strategy around the implementation. The Tasmanian Association of Hospice and Palliative Care, led by Colleen Johnson, is about education and awareness and also the delivery of advanced care planning. I want to particularly compliment the work of Anna Spinaze which I have seen on more than three occasions. She is one of those advocates who works in this space. I first met her at the Brighton-Broadmarsh CWA annual general meeting. She was the guest speaker. She was absolutely outstanding. I met her up at Triabunna at a community discussion around broader social issues in that area. Also, she attended what was a fantastic event, at the Ellendale Community Hall, last Friday: a comedy show about death. It was an engaging way of talking about something that we do not talk about enough.

The hospice@HOME program, led by Fiona Onslow, is about the clinical and medical support and the care coordination. I want to talk about death literacy. Dying to Know Day is in August. Did you know that only five per cent of Australians will make a plan for the end of their lives? Did you know that 45 per cent of Australians will die without a will? Did you know that only half of us have told our partners about the end-of-life care we want? Did you know that one in three Australians know what a shroud is and how it is used? Did you know that almost half of us want to know more about do-it-yourself funerals? Did you know 60 per cent of Australians choose cremation? Have you ever considered that there are alternatives? Did you know that only half of us get to die in our preferred place?

In the time left, I want to talk briefly about the hospice@HOME program. Seventy per cent of people, through research, tell us they want to die at home. Indeed, the system that has been developed in Tasmania—and which I think has the potential for a model nationally—is about wrap-around care. It involves all of the service providers to identify gaps in the existing services. It is not a new silo service. It is about packages. In recent times, 44 per cent of the people that have engaged with hospice@HOME have been able to die at home—and that is their preference. It is about support care, meals, respite, personal care and domestic support; it is about care coordination and keeping people out of hospital—not accessing ambulances as an emergency. The care provided averages about 64 days at home, avoiding presentations.

The most valuable thing is the 24-hour phone services. Registered and specialist nurses are available to triage the needs of each client. It is about home and community, where support exists and allows those people to stay in their communities. This is particularly important in an electorate, such as mine, in regional areas. It is a real success program. I encourage all those interested in this space to understand more about the good work that is being done. (Time expired)

Gai Brodtmann (Canberra, Australian Labor Party, Shadow Parliamentary Secretary for Defence) Share this | Link to this | Hansard source

I thank the member for Wakefield and those other members who have spoken on this motion this morning. It is a very important topic. It is a challenging topic, but it is very important that we do have a conversation about palliative care and end-of-life care. The theme for this year's national palliative care week is 'Dying to talk: talking about dying won't kill you.' This week is all about trying to normalise death and dying. Palliative Care Australia wants to get the conversation started on many questions. How do you want to be cared for? What values are important to you? That is really important to stress: what are the values important to you at the end of your life? What do you want when you die? Have you considered if you wish to be buried or cremated? Do you want to pass away at home or in a hospice? The previous member said that the majority of Australians want to pass away in their homes. It is wonderful that they do. It is a wish that most Australians would have. Unfortunately, at the end of life, particularly on the pain-management front, people need to be in a hospice environment in order to ensure that their last days, weeks and months are as comfortable and pain-free as possible. Quite often, they do need that care in a hospice environment. Also, have you established a power of attorney?

The aim of National Palliative Care Week is to promote the week, the important messages about palliative care and the value of palliative care to the health system and our community. It is also important to ensure our expectations and those of our loved ones are met in the final stages of our lives. This is particularly the case when it comes to organ donation. Members here would know that I have been a keen advocate of organ and tissue donation for many years. In fact, in my first term, I set up the Parliamentary Friendship Group for Organ and Tissue Donation.

Having been on the Gift of Life board as a volunteer director, before this life here, I know that people were very confronted by the whole notion of organ and tissue donation. They were confronted by actually having a conversation about what they wanted to do with their organs and tissue in the event of their death. One of the big issues was the fact that people shied away from discussion because of the so-called ick factor. This is also true for National Palliative Care Week. People find it very challenging to discuss the end of their life, what they want done with their organs and tissue, how they want to die and how they want their pain managed.

The member for Lyons just mentioned the fact that a significant proportion of Australians do not have a will. Those sorts of issues do need to be discussed. We need to ensure that our last days are comfortable and pain free, that we are surrounded by loved ones and, where possible, that we are in an environment where we choose to be but, most importantly, that we are not worried about what legacy we are going to leave both financially and emotionally.

Palliative Care Australia recommends people have an advanced care plan. Having a plan is all about patient choice and that means dignity—choices when it comes to what kind of treatment and medical intervention the patient wants. This is just one of the options, to express your wishes and to make arrangements for after death.

Labor understands the importance of palliative care. When we were in government we introduced a broad range of programs to improve palliative care, from specialist care to the palliative care approach in residential and aged- care facilities, and also a range of other packages to enhance the palliative care experience.

There are a number of organisations in my electorate doing great work in the palliative care area. I would like to thank and acknowledge the great team and the great work of Palliative Care ACT, Cancer Council ACT, Clare Holland House and the Canberra Region Cancer Centre.

As part of National Palliative Care Week this week I urge all Canberrans and in fact all Australians to take a moment to think about death. Take a moment to think about how you want to die and how you want to be cared for to live well, then communicate this to your loved ones. It is most important. Not only is it important that you communicate your intentions regarding your organs and tissue to your loved ones but it is also vitally important that you communicate your intentions for your last days. One of the greatest barriers to getting the care we want at the end of life is not talking about it and we should. Palliative care is not about hiding away or dying away; it is about affirming life and including death as a normal process. (Time expired)

Jane Prentice (Ryan, Liberal Party) Share this | Link to this | Hansard source

I am pleased to have the opportunity to contribute to this discussion about National Palliative Care Week and its theme: dying to talk; talking about dying won't kill you. I thank the member for Wakefield for bringing this motion to the attention of the House. Dying is something that many people still find difficult to talk about. Indeed, issues of life and death are still largely taboo subjects, but they do not have to be. Australians actually do want to talk about dying. Research conducted by Palliative Care Australia shows that 65 per cent of women and 56 per cent of men believe that death and dying are not discussed enough, telling me that this number increases to 73 per cent among respondents aged 65 and over.

Perhaps these numbers will change as the baby boomer generation tackles end-of-life decisions. Indeed, the baby boomer generations will provide us with many challenges. Elderly residents in care today have come through the Depression, World War II and are generally very appreciative of any support and care they receive. Not so the baby boomer generation, who expect services to suit their needs, not the other way around. They are the ones who should be considering these crucial issues now.

When we do talk about death and dying, sometimes the results can be surprising. Survey results show that Australians over 65 are six times more likely to prefer dying at home than in a hospital and are three times more likely to prefer home over a hospice. This poses a policy challenge for government because, in practice, most patients still die in hospital beds. Historically, palliative care has been seen as something that takes place in hospitals and hospices. Clearly, this needs to change, but it will require more than just a change in government policy. Culturally, the health system has always been about curing people and keeping people well. This is, of course, understandable and appropriate. It is also understandable that doctors, conditioned to want to cure and make well, are sometimes slower to recognise a patient that needs palliation and not cure. The hospital bed, which is the most appropriate place to treat a seriously-ill person, can be the least appropriate place to provide palliation. What is required is a system that can more quickly recognise patients requiring palliation and a system flexible enough to support patients dying at home, according to their wishes, as long as their condition enables it.

Support and advice is available to those who need it. In Queensland, there is PalAssist, a 24 hour, seven-day-a-week free telephone and online service available for palliative care patients, carers, family and friends seeking practical information and emotional support. The service is funded by the Queensland government and provided by Cancer Council Queensland.

But what this week is really about is having a conversation with those close to you to celebrate life and to talk about death. It is about encouraging people to be comfortable and confident to ask for the care that they want. Sadly, at the end of our lives not all of us will be in a condition to be able to direct the care of our choosing. That is why it is helpful to develop an advanced care plan so that health professionals, family and friends can conduct our care in the manner and location of our choosing.

Different states have different resources available. In Queensland we have advanced health directives, sometimes called living wills, that can be established by any adult to give instructions about their future health care. Advanced health directives can outline what treatment of health care a person wants if they are no longer able to make decisions for themselves. They enable people to appoint an attorney for health and personal matters, and they can include information that health professionals should know, including health conditions, allergies and religious, spiritual or cultural beliefs that could affect care. Importantly, in an advanced health directive it is possible to outline the level of incapacitation beyond which you would want life-sustaining intervention withdrawn. This can reduce the decision-making burden on family and caregivers as the end of life nears.

None of this is possible without first starting the conversation about dying. So, in the spirit of National Palliative Care Week, let us not be afraid to all go out there and start a conversation.

Debate adjourned.