“Have you been around during the last months of someone’s life, either a friend or a relative? Do you believe they had a good death, to the extent that any death can be good? Or was it a story of their own preferences and their own hopes being overriden in those last few months?”
ABC Radio’s Richard Glover opened his latest ‘Mid-week Conference’ program with those questions.
He interviewed Professor Jane Hall about a new study she is conducting.
Professor Hall is Distinguished Professor at the Centre for Health Economics Research and Evaluation at Sydney’s UTS University. She’s leading a study, starting this year, to evaluate ‘Community preferences for care at the end of life.’
Richard wanted listeners to phone in with their stories about the death of someone they loved : “Maybe they had more medical intervention than they wanted? Maybe dying in hospital when they really had always yearned to die at home.
“What are the components of a good as possible death? Maybe you’ve seen it in the positive, maybe you’ve seen it in the negative.
“We want your stories either way, this afternoon.
“Does our health system, for instance, sometimes get in the way?”
“Have you been around during the last months of someone’s life, either a friend or a relative?” – Richard Glover.
Then Jane shared some of what she and her team have discovered.
“If we ask people the question ‘how would they like to die?’ most people will say the best thing that could happen is they would just drop off quietly in your sleep without anything else. But we have so many more medical interventions possible now,” she said.
“What are the really important components of those last months and weeks of life that will make the inevitable a better experience for the individual patient and for the family?” she asked.
“There is a sense here that not everyone is getting what they want out of the health system,” she told the listeners.
Her study will colour in our understanding about needs at death. It might change a few preconceptions and it’ll help correct a few myths. It’s unlikely to come up with any major surprises but the good thing is, it will put substantial banks of numbers behind what we know anecdotally.
And it will mean we can use our own data to inform our decisions. For example, it’s often said that 70 per cent of people want to die at home. In Australia, that idea is based on a study that is nearly 20 years old – or it extrapolates from more recent overseas studies. It’s likely the figure reflects the truth but finally we will have our own figures to tell our own story, and this will give us a lot of confidence about this tricky, complex, topic that we sometimes try to avoid.
Many people phoned in to Richard’s program. The switchboard lit up with calls from people who wanted to share their stories. It was a remarkably popular subject, for one we think we don’t want to talk about.
I will update this page with more information and links to Jane’s study when they become available.
In the meantime, to hear Richard and Jane’s conversation with listeners go to: https://www.abc.net.au/radio/sydney/programs/drive/drive/10831574.Look for Drive of Wednesday 27 Feb, 4pm and set the pointer at 1:29:00.
To find out more about Professor Jane Hall, go to:https://www.uts.edu.au/staff/jane.hall
A Good Death: a compassionate and practical guide to prepare for the end of life will be available in bookshops from May 6, 2019.