Free palliative care services offer much-needed practical and emotional support to those nearing the end of their life, their loved ones and carers. Here’s how it works and how you can access it.
My father taught me to swim, to play tennis, to love reading and to approach the world with curiosity and humour. Last year, he taught me that there can be dignity in death. He had been ill for two years, but the last weeks were hard. My 82-year-old mother did much of the nursing on her own, lovingly tending to his increasing needs. Dad worried about her, he hated “being a nuisance”. I came to stay, bringing my past nursing experience, but this was very different from nursing a stranger. We were all distressed. Then my sister heard about a local service, Banksia Palliative Care, which provides help in such circumstances.
Suddenly we were not alone. Within a couple of days of our initial call we had all the aids we needed – bed frame, recliner chair that also helped to stand him upright, walking frame, dressing packs – they identified needs we hadn’t considered and within hours had filled them. They involved the Royal District Nursing Service (RDNS) and liaised with Dad’s doctor about pain management. Importantly, we could call Banksia for advice 24 hours a day and immediately the desperate nights of uncertainty seemed manageable. Their support extended beyond the accoutrements of illness. They offered hairdressers, masseurs, respite care volunteers.
Had Dad been less ill, we could have called on a music or art therapist to help him through long hours of inactivity.
When Dad died, Banksia’s counsellors offered bereavement support to my mother. And all this – all of it – was free, yet it is a service that has gone largely unheralded. My only regret is that we did not bring them in earlier because we did not know they existed.
What is palliative care?
Palliative care is about assisting the dying to remain in their homes for as long as possible, or to die at
home if that is their wish. Most palliative care services can access beds in local hospitals and hospices
if patient and family so choose. As is evidenced by the range of supports it provides, palliative care’s focus is holistic health care for people living with life-limiting illnesses. It achieves its goals by managing six dimensions of care:
cultural and spiritual needs.
Everyone in Australia is within reach of some palliative care services. Not all local providers work with the same model of care, or offer the same range of complementary services, but at least basic palliative care is available for everyone who needs it. Palliative Care Australia is the body that guides the various state member organisations throughout Australia (see box). Its Acting Executive Director, Donna Daniell, says that its overarching purpose is to improve access, equity and quality of palliative care across Australia.
It was not always thus. A century ago, only the privileged could afford ‘hospices for the dying’. Since then, services have become far more wide-reaching and for many years palliative care has been growing in significance and range. Three years ago, the Federal Government gave $55 million for a number of excellent projects, but operational funding has remained virtually static, creating strain on individual services. Funding is currently under review and a decrease would be disastrous – such services are expensive to run and, even now, at least 20 per cent of Banksia’s operating costs are met by donations and fundraising efforts such as raffles and cake stalls. Some providers have an even greater shortfall to meet.
How does it work?
Most palliative care services operate by appointing each new patient a case manager who goes into the home and undertakes a holistic assessment. As Dad’s case manager, nurse Jenny Lumsden sat with us and chatted about his needs, but also about his garden and the family. During this time, she watched carefully, looking for indications of needs beyond the family’s assessments. “I’m looking, listening to them, watching them move, their facial expressions,” she says of her initial and subsequent interactions with client and family.
In our case, she drew up a care plan that included visits from the RDNS nurse, who would have showered him daily if required, and a number of mobility aids that made life much easier for everyone. She helped Dad to understand his pain relief options and watched Mum carefully, ensuring that she was coping. Dad mentioned that his hair needed trimming, the next day a mobile hairdresser arrived. Would he like a relaxing massage? Would we like a volunteer respite carer to come in to sit with him? We were overwhelmed by the attention and service.
Many must, like us, feel they are almost collapsing under the strain of loving and caring and losing. When Jenny arrived with her seemingly bottomless basket of resources and unfailing support, we felt almost physically held up – buttressed against that impending collapse – and found the strength to continue.
Sadly Dad didn’t need palliative care for long, but for the two weeks that he did, it was heaven-sent.
When the time came, we called Banksia and told them that dad needed hospitalisation. They immediately arranged a bed in the palliative care ward of our local hospital and sent an ambulance to transport him there. No fuss, no waiting on trolleys, no anxiety beyond that of our looming loss. It was unbearable watching Dad slip from us, but he was 84 and had lived a strong and wonderful life.
Cruelly, many palliative care clients are very young. Their needs and the needs of their parents, siblings, extended family, friends and teachers are quite different. Often art and/or music therapy helps these children to express their emotions and this helps those around them. A resource called Journeys is available through Palliative Care Australia for young people and their carers (see resources box). Donna Daniell says that it was produced by carers and professionals who have been through this ordeal, as a gift for those who might yet go through it. And in the end, palliative care is just that, a gift in every sense, one provided by government funding and community generosity and delivered by skilled carers to people wanting their last days to be less about dying and instead, where possible, about the life they still have.
Palliative Care Australia offers some excellent resources to help carers and the community understand the role of palliative care including:
Palliative care: it’s more than just pain control
Journeys – Palliative Care for Children and Teenagers
A journey lived – a collection of personal stories from carers
And for the health professional:
Guidelines for a palliative approach in residential aged care – aged care palliative approach workshops.
Palliative Care Australia
Ph (02) 6232 4433
Palliative Care NSW
Ph (02) 9212 1827
Palliative Care Queensland Inc.
Ph (07) 3391 2900
Palliative Care Victoria
Ph (03) 9662 9644
Palliative Care WA Inc.
Ph (08) 9212 4330
Palliative Care Council of South
Ph (08) 8291 4137
Tasmania Association of Hospice and
Palliative Care Inc.
Ph (03) 6234 7577
ACT Palliative Care Society Inc.
Ph (02) 6273 9606
Palliative Care NT Inc.
Ph 0432 086 619 (Hon. Secretary)
Australian & New Zealand Society of
Palliative Medicine Inc. (ANZSPM)