By Lyndal Irons
Despite advances in technology, modern society is getting worse at caring for the dying. Dr Michael Barbato, in his address ‘The Dying Odyssey’, in October told the National Aged Care Chaplains Conference that more than forty years in medical practice had led him to conclude that the secularisation, institutionalisation and medicalisation of death in the 21st Century was counterproductive for those in the process of dying.
While advances in technology had resulted in people living longer, Dr Barbato questioned whether the obsession with extending life was actually only working to prolong death.
“There comes a time in all of our lives when preparation for death becomes more important than efforts to prolong it,” he said.
“What we have failed to recognise is when that time is. What has happened is that the time for preparation has moved closer and closer to the time of death.
“We need to look at the care of the dying in a different way.We need to marry the holistic model of care with the biomedical model of care. They need to be happening together.”
Dr Barbato believes that death is too often treated as a symptom rather than a human experience.
“What is important is the person, not what they are dying from,” he said.“What we are dealing with are human beings, not the disease.”
He said that death was now harder to predict and more difficult to manage, creating a more traumatic experience than that which was encountered earlier in history.
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He said doing some maths — subtracting the hours spent with doctors from the hours medicine added to a life — could help determine whether medicine was preventing death or life.
For many people, he said, news that their illness was terminal came as something of a relief after a period of pain.The main fear was how they would go.
While acknowledging that every person was different, he said his extensive experience in palliative care allowed him to distinguish a number of factors important to dying people:
o Physical comfort. Patients are often more frightened of how they will feel before they die than the death itself.
o Commitment to continuing care throughout the dying process.
o Honesty, authenticity and vulnerability — especially in palliative care, he said, communication is ninety per cent non-verbal and visitors and family should not feel obliged to have all the answers.
o To be treated as a person not a patient.
o Time to explore, reflect and review.
o Reconciliation.
In earlier times, people expected to encounter death more frequently in their environment and therefore had greater acceptance of it as a stage of life.
He said many families used to have a coffin handy somewhere in storage for such an event. But now there was much undue prolonging of life due to fear of death or fear of litigation.
He said the modern trend of being in “death denial” furthered trauma by reducing the time available to prepare for the inevitable.
In his work in palliative care, at least once a month a family member asked him not to reveal the severity of the condition to the person who was going to die.
Dr Barbato said that, with death, the destination was the same for everyone but the choices people made on the way were very different.
For some, the decision to undertake a treatment that would extend their life in reality only extended their death.
He spoke of one woman who was being tube fed. She told him that what she desired most was the taste and experience of a cup of tea — whether it ended up in her stomach or her lungs.
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What they didn’t want, he said, was gratuitous advice.“Silence is perhaps the most important and most difficult thing you can offer someone who is dying.
“Chaplains exist to assist with the healing process as patients try to come to terms with their condition, but they should not try to heal the person they are caring for.
“Suffering is an experience to be lived,not always a problem to be solved,” Dr Barbato warned. When people were dying, the most common subject he discussed was regret.
He said the best way people prepared for death was by leading a full and active life. He said that advice was apt for people without a life expectancy prediction too.
“Death is a very magical, mystical and significant period in someone’s life. Everybody is dying everyday and acknowledging that makes us live better.”
Lyndal Irons is a journalist working in the Communications Unit of the New South Wales Synod of the Uniting Church.