Approaching death is an opportunity for individuals and those who care for them to reduce suffering and achieve something more human and humane. Sadly, few dying people or their carers achieve these ends.
These issues will come into focus on Thursday 6th October when the University of Sydney hosts Dying Re-imagined: designing a better way to die – a public conversation about how to bring compassion and imagination to healthcare and the way we care for people who are approaching death.
“Most people in western countries die in institutional settings – in hospitals, hospices and nursing homes,” says the University Sydney’s Professor of Nursing, Kate White.
“This means professionals do the lion’s share of hospice and palliative care for dying and terminally ill people. Of course, many sick and dying people are also cared for by their spouses and families at home, but the way we care for people – be it at home or in an institution – deserves more discussion and creativity.”
Kate White is one of three palliative experts who will speak at the Dying Re-imagined forum. She will be joined by Dr BJ Miller, TED speaker and palliative care doctor at UCSF Helen Diller Family Comprehensive Cancer Center where he also teaches and serves on faculty, and Professor Rod MacLeod, a senior staff specialist in palliative care at HammondCare and Conjoint Professor in Palliative Care at the University of Sydney.
The way we care for people – be it at home or in an institution – deserves more discussion and creativity.
Miller agrees there’s more scope for creativity in the way that we care for people.
“Caring unites the carer and care-receiver and when it’s done with compassion and love, it can be transformative,” he says.
“This is the ethos of palliative care – to foster the human capacity for transformation.
“Palliative care isn’t limited to end-of-life care or hospice. It's about providing comfort at any life stage. People don't have to be dying to benefit from it and its principles can aid anyone we might care for, whether we’re a professional, a friend or a family member.”
Although he has argued hospitals are “no place to die’, Dr Miller spent a decade with Zen Hospice Project, an organization grounded in the values of compassion and service that offers hospital and facility-based care to people with advanced and terminal illnesses.
“I revere hospitals for what they can do; I am alive because of them,” says Miller who, as a young man, suffered catastrophic injuries that left him a triple amputee.
“But we ask too much of our hospitals. They are places for acute trauma and treatable illness. They are no place to live and die; that's not what they were designed for.
Caring unites the carer and care-receiver and when it’s done with compassion and love, it can be transformative.
Professor Rod MacLeod is part of 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 1500 people and of these, three in every four patients are able to achieve the goal of dying at home.
“This is achieved through the efforts of caring, compassionate people who’ve been specially trained and have volunteered for the program,” says 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.”
Caring for people whose illness often diminishes their quality of life has taught Miller that attending to small details can have profoundly positive benefits.
“Little things aren't so little” says BJ Miller. “So much of it comes down to loving our time by way of the senses, by way of the body – the very thing doing the living and the dying … as long as we have our senses – even just one – we have at least the possibility of accessing what makes us feel human, connected.
“Probably the most poignant room at Zen Hospice was our kitchen, which is a little strange when you realize that so many residents could eat very little, if anything at all. But we realize we are providing sustenance on several levels: smell, taste, a symbolic plane.”
Miller says many people facing death and prolonged illness want to bring death forward because they are “repulsed by what their lives have become”. They are also repulsed by the insensitivity and inhumanity of professional, institutional care.
With record numbers of baby boomers now living with chronic and terminal illness, Miller says “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.”
Information for patients, carers and professionals from Paliatve Care Australia
Video stories by and for patients and professionals from The Palliative Care Bridge