Tonight I rise to speak on a rather sensitive subject: palliative care. In 2010, when people in Australia were asked where they would prefer to die, most nominated their home as their preference. However, the data collected on the place of death indicates that only 16 per cent of people die at home, while 20 per cent die in hospices and 10 per cent in nursing homes. The rest die in hospitals. This data suggests that many people do not receive the end-of-life care that they would prefer and that most people do not spend their final moments in a space that is familiar and that they feel comfortable in. This is a tragic situation and we in this place need to work on it to improve it.
As one of the co-convenors of the Parliamentary Friends End-of-Life-Care Group, I know that more needs to be done to improve conversations that we have in our society about end-of-life issues. More needs to be done to ensure that Australians spend their last moments in places that are familiar and that they are comfortable in.
I was very pleased to launch a training session recently in Hobart designed to encourage the use of the guidelines for a palliative approach for aged care in a community setting. The guidelines provide a framework for enhancing the care of residents and their families by offering them a palliative approach when appropriate and increasing the knowledge and the range of skills of staff in providing the palliative approach in caring for residents and their families. The Australian Healthcare & Hospitals Association, in conjunction with the Silver Chain group, will be delivering these sessions free of charge across 80 workshops throughout 2014 and 2015. Importantly, the training sessions can also be undertaken online and are available through http://www.palliativecare online.com.au.
The training session that I launched saw many representatives from Tasmanian healthcare and volunteer organisations, including TAHPAC, PEPA, The District Nurses, Cancer Tasmania, the Department of Health and Human Services and numerous aged-care facilities. It involved representatives of the entire multidisciplinary team, including doctors, nurses, allied health workers, carers and volunteers. I hope that training in these guidelines will make it easier for palliative care workers and volunteers in communities across Tasmania to continue the wonderful work they do in extremely difficult circumstances.
This training was available to Tasmanians via the federally funded Better Access to Palliative Care in Tasmania Program. This was delivered as part of the federal Labor government’s Tasmanian Health Assistance Package, which is providing funding of $54.95 million over four years, to 2016, to increase the provision of community based palliative care services and to build and strengthen the delivery of palliative care services across Tasmania.
I would like to thank the previous federal Labor government, particularly former health minister Tanya Plibersek, for acting to improve palliative care. It is important that members of this place and of the other place continue to learn about palliative care to better inform policy concerning the issue.
I, as co-convenor of the Parliamentary Friends End-of-Life-Care Group, along with Ms Marino from the other place and co-convenors of the Parliamentary Friends of Dementia, Mr Neumann and Ms Gambaro, also from the other place, was pleased to host a lunchtime briefing on dementia and palliative care, held on 12 February here in Parliament House. Palliative care for those with dementia presents its own specific challenges and is an area of particular interest for policymakers.
I am pleased to have seen a number of senators and members in attendance and I thank them for attending. We were joined by senior authorities on Alzheimer’s and palliative care including: Glenn Rees, CEO of Alzheimer’s Australia; Graeme Samuel, from the Board of Alzheimer’s Australia; Dr Yvonne Luxford, CEO of Palliative Care Australia; and Professor Patsy Yates, President of Palliative Care Australia.
Former Australian of the Year and National President of Alzheimer’s Australia, Ms Ita Buttrose, outlined the importance of starting to discuss issues around dementia early on before the disease takes effect. Alzheimer’s Australia has a new resource to help people talk about issues surrounding dementia, called ‘Start2Talk.’ It offers information sheets, proforma plans to allow you to plan for a future with dementia or to plan how to care for someone with dementia and specific state-by-state information. It also contains extensive information on dementia for healthcare professionals and other support providers, including doctors, nurses, social workers, chaplains, community care workers, dementia counselling and support workers. I encourage everyone to visit the website http://www.start2talk.org.au and to read the information available.
Esteemed Professor Rod MacLeod, who is a senior staff specialist in palliative care at HammondCare in Sydney and conjoint professor in palliative care at the University of Sydney also addressed the Parliament House briefing. Professor MacLeod outlined to the group some of the specific details of palliative care, what is meant by the term ‘palliative care,’ when and where it is provided, and by whom. He highlighted that palliative care is provided to people of all ages who are dying, not just the elderly, and that the need for palliative care does not depend on any specific medical diagnosis but on the individual person’s needs.
Some of the common medical conditions of people requiring palliative care include: cancer, HIV/AIDS, motor neurone disease, muscular dystrophy, multiple sclerosis and end-stage dementia. Families and carers also receive support from palliative care services. Families provide much of the care for people who are dying, and practical and emotional support for them in this role is critical. I should take a moment to highlight the work done by Palliative Care Australia. They do fantastic work, promoting awareness of palliative care and providing resources for professionals, families and volunteers.
National Palliative Care Week 2014 is being held between Sunday, 25 May and Saturday, 31 May 2014. The theme this year is: ‘Palliative Care is everyone’s business: let’s work together.’ This year they are celebrating the people who work in palliative care and the important role they play in ensuring quality care at the end of life for all. Everyone from doctors to nurses and other health professionals, through to the volunteers, patients and carers, all have an important role to play in palliative care. They want to educate the community about all of the different people involved in palliative care and encourage people to think about what their role may be. They are looking for people involved in the palliative care sector to volunteer to be part of the campaign. So if you are interested, please go online to palliativecare.org.au and volunteer by 28 March.
On Thursday, 29 May Palliative Care Australia will be hosting an education forum. Interested people can choose to attend in person in Canberra or via a webcast. More details will be available soon but, to register your interest, email Gretchen Irvine at firstname.lastname@example.org. Of course, if you wish to organise your own National Palliative Care Week event you can do so and Palliative Care Australia will help you promote it. Please contact them through the website with the details. National Palliative Care Week resources, posters and promotional items will be available to order from early April and a list of events will be available soon.
I am grateful to all the committed professionals and volunteers working in the palliative care sector. This surely has to be one of the hardest jobs within the healthcare sector. They know that their clients or family members are dying and that this will happen sooner rather than later, that their goal is not to prolong life but to help people live as comfortably as possible in their remaining time and give those who are dying the opportunity to visit with family and friends, to tie up loose ends, to laugh and cry, to tell their stories and to say goodbye to those they love.
Research has taught us that the carers of dying people often make do with whatever information and support is available to them or comes to their attention should they happen to be at the right place at the right time or have the know-how to navigate the system. Those fortunate to have sufficient support feel more positive about their caring experience, while those less fortunate undertake caring responsibilities at the expense of their physical, emotional and financial wellbeing.
I encourage all senators and members in this place, and those people who are watching or listening at home, to discover more about palliative care and to think and talk about the issues involved so they have a good understanding of how they or their loved ones will deal with this situation when the time comes. This may be a difficult topic to think or talk about but, believe me, it is one too important not to.