Brave conversations part of designing a better way to die

It is important all Australians consider how they want to die, so the hard choices at the end of life do not contribute to unnecessary suffering, HammondCare’s Senior Staff Specialist in Palliative Care, Prof Rod MacLeod said.

Speaking at a Sydney Ideas event at Sydney University, Prof MacLeod said unless we have an open, honest and brave conversation about death in Australia, we will continue to struggle with the hard choices that face us all at the of life.

“We all want to meet the end of life with a sense of peace and resolution. This is why we all must have the conversation about how we want to die. There are too many misconceptions around palliative care and the choices available.”

Dying re-imagined forum

The theme of the forum discussion: “Dying re-imagined – designing a better way to die” also featured American Dr BJ Miller, a TED speaker and hospice and palliative medicine physician who sees patients at the UCSF Helen Diller Family Comprehensive Cancer Center in San Francisco.

His 2015 TED Talk , "What Really Matters at the End of Life", is about making empathic end-of-life care available to all, and has ranked among the Top 15 Most Viewed Talks of 2015, surpassing 4 million views.

Dr Miller talked about redesigning palliative care to bring compassion and imagination to the care of the dying. He said there is more scope for creativity in the way that we care for people, when they are dying.

“Caring unites the carer and care-receiver and when it’s done with compassion and love, it can be transformative,” he said.

Not ready for silver tsunami

With record numbers of baby boomers now living with chronic and terminal illness, Miller said “we are nowhere near ready or prepared for this silver tsunami. We need an infrastructure dynamic enough to handle these seismic shifts in our population. Now is the time to create something new, something vital. I know we can because we have to. And the key ingredients are known: policy, education and training, systems, bricks and mortar. We have tons of input for designers of all stripes to work with.”

Professor Rod MacLeod agreed education was a key component in making change: “There should be more education in palliative care for all relevant health professionals, and palliative care training modules should be included in all relevant university courses.”

He said ensuring proper palliative care training for health professionals makes for a far better experience in palliative care.

“Funding for palliative care programs and integration of existing services is also crucial – so all Australians have access to the same services. A good example is the NSW program which provides assistance for people wanting to die at home – this should be made available in all States and Territories.

Palliative care at home

"The Palliative Care Home Support Program (PCHSP) is run by a consortium funded by NSW Health, to assist people to die at home. Comprising HammondCare, Sacred Heart and Calvary Healthcare, the consortium has provided care for 1700 people so far in NSW and of these, almost three in every four patients have been able to achieve the goal of dying at home.

“This has been made possible through the efforts of caring, compassionate people who’ve been specially trained and have volunteered for the program,” said Prof MacLeod.

“The presence of these people has made a huge difference and our evaluations show that families really value the ability to manage this most difficult of times. It takes dying out of hospitals and back to the community which in itself helps to demystify dying.”

Also speaking at the public conversation about designing a better way to die was University Sydney’s Professor of Palliative Care Nursing, Kate White, who said the way we care for people – be it at home or in an institution – deserves more discussion and creativity.