This year's National Palliative Care Week day in Parliament House, organised by Palliative Care Australia (PCA), had the theme “Palliative care is everyone’s business—let’s work together”. The NRHA's interest, shared by PCA, is how palliative care can be everyone's business in rural and remote areas.
PCA is the national peak organisation representing the interests and aspirations of all those who share the ideal of having quality care at the end of life. For the one third of the population who live away from the major cities this ideal poses some particular challenges.
PCA's special day in Parliament House began with a breakfast chaired by Julie McCrossin at which parliamentarians, health consumer groups and policy and non-government organisations heard poignant stories from people with experience of caring for loved ones in their final days.
Having access to effective pain relief and quality home-based palliative care (including in aged-care facilities) featured highly, as did the importance of Advance Care Plans so that families, carers and health-care teams know exactly what level of medical care and other needs a dying person might have. Ideally such plans are made well before a person is too unwell to make decisions. Other significant matters related to the need for all health professionals to be aware of the work of palliative carers, and for more data, research and policies to ensure better availability of home-based palliative care.
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The breakfast’s keynote speaker, Dr Sarah Winch from the University of Queensland’s School of Medicine, is highly experienced, both as a palliative care academic-researcher and a carer. She has extensive clinical experience in dementia, palliative and community nursing, teaching and advising about ethical issues. But Christmas 2007 saw her life change suddenly when her 48-year-old husband, Lincoln, was diagnosed with kidney cancer.
Lincoln died just four months later, with Sarah by his side. In 2013, she published the book, Best Death Possible: A guide to dying in Australia, sharing stories of how they managed the Australian health care system to “get the best death possible”. She ended her presentation with some poignant anecdotes including of the young man who died several hours after achieving his “great wish” of “having just one more time surfing”, and the couple with terminal illnesses who decided to spend their final days cruising the seas.
Other carers told very moving stories. Adelaide-based economist, Peter King, described three years of nursing his wife, Caroline, before her death from breast cancer in 1996, aged just 38 years. He set up a “hospital” in their lounge-room, learned to administer drugs and took care of her needs, helped by a home-based palliative care team, which “swings into action” with “personal and incredibly respectful services”.
Caroline did not want to die in an institutional setting. That’s where the palliative team took over, helping the family at their very vulnerable point: “Taking the children to a hospital to see their Mum would have been too hard when Caroline was very sick. Being at home meant that the family could have spontaneous moments together—such as late in the afternoons when the children would rush in and tell their Mum about their day at school”, says Peter.
Nine years after Caroline’s death, Peter was to nurse his 76-year-old mother, Berrill, in her final days.
Paediatric care and nurse consultant, Maria Heaton, relayed her story of loss and caring, including on the death 10 years ago of her youngest child, Tiarna, then aged three years.
Tiarna and her brother, Tristan, were born with lissencephaly, a rare brain disorder. Nowadays, 17-year-old Tristan is confined to a wheelchair and fed through a tube in his stomach and has daily seizures. He needs significant levels of care.
Maria emphasised the importance of having access to quality care: “Tristan has brought so much to our lives…he’s so trusting…[and] for Tristan to continue trusting” he must have “the best care possible”.
Having drawn inspiration from a palliative care nurse who had helped care for Tiarna, Maria emphasised the many factors that affect the family: difficulties that she and her husband, Fabian, sometimes face in administering drugs; financial drains on the family; constant exhaustion, and the need to prioritise and balance everyone’s needs. The couple’s other daughter, Danika, who does not have a disability, has a hectic time with her final-year high-school studies and needs support too. The family now faces a further hurdle as Tristan turns 18 and will not have access to the local swimming pool because he cannot use the children’s change rooms. An alternative will have to be found: “He just comes to life in the pool!”
In their “spare time” Maria, Peter and Sarah help other people in similar circumstances. Maria advocates for various charitable organisations and supports terminally-ill children and their families; Peter strongly promotes Advance Care Plans, emphasising that it can be much easier for people to discuss options on end-of-life issues, well before the time of death. Sarah uses her considerable experience in advising people who receive the “catastrophic news” that they may lose a loved one soon.
The day in Parliament House included educational sessions on funding, cultural safety and international trends, and a panel discussion: What are the barriers to making palliative care everyone’s business and how do we break them down? Panelists included Craig Dukes, Director of the Ngunnawal Centre, Canberra University’s Support Centre for Aboriginal and Torres Strait Islander Students. Craig is a co-opted member of NRHA's Council.
One of the other highlights of the day was Minister Dutton's announcemet of $52 million for the National Palliative Care Program.
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