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The freedom to die well

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To be or not to be, isn’t the right question: it’s how in the last years, months or days of our lives, we choose to live.

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This story is about the palliative care movement and the freedom and authenticity it offers, as eternity rises to meet us.

While much spurious rubbish has been written about the Baby Boomer generation, there is one real qualitative change: most want to die at home rather than in a hospital or aged care home.

Currently, about 58 per cent of South Australians want to die at home yet only 14 per cent do so, according to Palliative Care SA. Around 45 per cent die in hospital and 32 per cent die in residential care.

Palliative care seeks to improve the quality of life of patients and their families, who face life-threatening illnesses. It combines pain relief with the treatment of other physical, psychosocial and spiritual issues.

The new RAH and the new wards at the Flinders Medical Centre are a technological marvel but the focus now must be on those who wish to die at home.

According to the 2016 Census, there are 520,000 South Australians over 55 years of age. In the next 20 years or so, if the State Government doesn’t want half of those 800 beds in the new RAH filled with elderly people in the last stages of their life, it will have to double the number of community palliative care staff and provide far more resources beginning now.

The government is dragging the chain. Last year during the “Death with Dignity” debate in state parliament, former Health Minister Jack Snelling apologised for inadequate funding of palliative care. Yet in the recent state budget, there was no new money for the sector.

The real driver of the Boomer’s longevity is medical science. It is keeping more people alive longer. This is a testament to medical science researchers but there’s a dark side too.

Doctors, nurses and hospitals work under the assumption that unless clearly stated in advance, a patient with a terminal condition is to be pulled from the jaws of death, no matter what. In many cases, death would have been be less painful or tragic.

Whatever the limits and travails we face, we want the freedom to be the authors of our lives

In his book, Being Mortal, Dr Atul Gawande writes: “Medicine often fails the people it is supposed to treat. The waning of our lives are given over to treatments that addle our brains and sap our bodies for a chance of benefit … we have allowed our fates to be controlled by the imperatives of medicine, technology and strangers.”

What should the goals of care be when you are no longer able to speak with your loved ones? When you are no longer able to feed or bathe yourself?

Paul had an aggressive brain cancer (Glioblastoma). He was in his late 40s and I would visit him twice a week in hospital. We used to surf together at Pondalowie Bay on Yorke Peninsula. The cancer was growing quickly. It was inoperable. His father wanted more chemotherapy. His wife wanted him at home. His mother didn’t know what to do. No-one asked Paul what he wanted.

The specialist said there were experimental drugs they could try. But he didn’t tell them the truth – because the truth is hard: no-one survives this form of cancer. Paul took the drugs and then his heart stopped. They resuscitated him and he fell in to a coma from which he never awoke.

Neither Paul nor his family considered palliative care. It was never flagged. I had a front row seat at a tragedy. The last weeks of Paul’s life could have been spent at home, tended to by his loved ones and a nurse, rather than stuck in a hospital with tubes coming out of him.

The attention of palliative care nurses and family in the home appears to have a therapeutic effect on the patient.

Professor Greg Crawford, the Chairman of Palliative Care South Australia says: “We have increasing evidence demonstrating that the early introduction of palliative care provides a survival benefit. People not only have better symptom control and understanding of their situation, but that they live longer…”

Nationally, only seven in every 1000 employed medical specialists are palliative care doctors, according to a report, ‘Palliative Care Services in Australia’ (May, 2017), by the Australian Institute of Health and Welfare. Only one in every 90 employed nurses are palliative care nurses.

This is surprising. Palliative care doctors and nurses sail to the shores of death, armed with compassion, empathy and medicines to relieve pain. Then they help those left behind to cope with grief. These people are worth their weight in gold.

Every hospital admission should look at whether a patient is likely to die within 12 months. If so, it’s essential for doctors to talk to the patient and their family to determine what’s important for the patient as they near the end of their life.

Advanced Care Directives are legal documents that allow people to appoint a person or persons as a substitute decision-maker, when they can no longer make decisions for themselves. It allows them to make end of life decisions, specify their wishes for future healthcare and more.

Whatever the limits and travails we face, we want the freedom to be the authors of our lives. This is the true meaning of existentialism.

The battle of being mortal is to maintain integrity in one’s life: to avoid becoming so diminished, dissipated or subjugated that you become disconnected from who you were, who you are or who you want to be.

Doctors have good reason to be catalysts of change. Every doctor knows that in the end, they too will find themselves on the patient’s side of the stethoscope or watch as a colleague looks at scans and says those mortal words: “I don’t like the look of that.”

Malcolm King, an Adelaide writer, works in generational change and is a regular InDaily columnist.

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