Where the heart is
The home hospice
By June 2011
When they told our sister Marie that her untreatable lung cancer would kill her in less than a year, she said she wanted to die at home. She was a difficult, bossy person, but we rolled up our sleeves and resolved, with her friends and children, to wing it.
One Sunday, seven months later, a widow who had home-nursed her husband emerged from Marie’s bedroom at the end of her shift and saw us drawing up a roster for the coming fortnight. She said gently, “You won’t need that, girls. She’s only got a few days left.” A palliative nurse from Caritas Christi Hospice came that Wednesday to check Marie’s morphine. At the door she said, in a tone so simple it was almost casual, “She’ll die tonight.” She did, and another woman from the hospice came and laid her out.
One hundred and thirty people like these – seasoned, unflappable, all but eight of them women – gathered, one Friday last autumn, in a pale, clean, suitably tomb-like underground room in Sydney’s CBD, for a conference called Live, Talk, Die.
Organised by a pragmatic community outfit called Home Hospice, and moderated with a delicate touch by journalist Caroline Baum, the day was advertised as “conversations about where and how we die”. Formal addresses and panels kicked discussion along but what I found most moving about the event was the camaraderie that flowed between people who’ve risked this intimate, hard, but deeply rewarding endeavour: helping a loved person through to the very end of life.
Eight in ten Australians, says Home Hospice, express the wish to die at home, but only two in ten end up being able to. A chasm lies between the health professionals and the timid longings of ordinary people. So Home Hospice trains volunteer mentors to support carers in their homes, and to put them in touch with resources that are already available in the community but that many people – even some general practitioners – don’t know exist.
Gill Batt, director of support services at the Cancer Council NSW, told the conference about a woman who was informed that her GP would be “the conductor” of her dying husband’s home care. “I found the conductor,” said the wife, “but where was the bloody orchestra?”
It is hard at first to speak plainly of death. Even in the underground room, where everyone was familiar with the bare facts of dying, a delicacy inhibited us. Caroline Baum risked the discreet expression “bodily fluids”. When someone blurted out the word “shit”, a laugh of relief ran round the room.
Another troublesome word is ‘palliative’. The thing dying people fear most is pain. The sooner they accept palliative care, the less they are likely to suffer, but the term strikes fear into many hearts, and there exists a great public ignorance about it. Sharon Wiley, from the Sacred Heart Hospice at St Vincent’s in Sydney, remarked that euthanasia has hijacked contemporary debate about the end of life. One doctor asked his new patient, a man whose wife had recently died, “What do they actually do, in palliative?” “Words,” the man replied, “could not explain it.”
The ethicist Simon Longstaff pointed out that in our desire for control and mastery, and in the noble ambition to prolong life, we have unfortunately invented the technology to make people die slowly. Gill Batt asked a black riddle: “Do you know why they nail coffin lids down? To stop the oncologists.”
Dr Jonathan Gillis, a physician with long experience in paediatric intensive and palliative care, said that, while 50% of children with cancer die at home, other parents feel safer in a paediatric ward, and find solidarity there with fellow parents enduring unbearable suffering and grief.
“Yet in the whole of palliative literature about children,” said Gillis, “there is not one mention of parental love.” He quoted a haiku written after the death of his young child by the Japanese poet Issa, whose Buddhist philosophy of non-attachment did not save him from his anguish: “The dewdrop world / Is the dewdrop world / And yet—”. Poetry, as always, stilled the room.
There was a generosity here, an eagerness to listen. Nobody was running a line. People had been to some hard places, and returned wearier and wiser. I asked a woman at my table where she was from. She laughed and said, “I’m from the trenches.”
Research shows that you have more chance of dying at home if you’re female, married and have health insurance. Men carers are better at asking for help, and more likely to get it. No one should have to take on full-time home care alone but women make a stick for their own backs: they believe they should be able to manage without help, and feel guilty when they find they can’t.
In the day’s final panel, which I had been invited to join, the talk turned to anger and hurt and forgiveness. Can you care intimately for a dying member of your family, if what’s wrong between you is too impacted to resolve? This was a fraught matter. Several people shed tears. I recalled our surprise that with my hypercritical sister we had been able to step around this obstacle; that a very simple, practical love can be born at the approach of death.
“What does ‘dying with dignity’ mean?” asked the moderator.
“To me,” said Kathy Lee, Home Hospice mentor, who had nursed her father and her husband in quick succession, “it means dying quietly at home, with my family around me.”
Joel Nathan, a cheerful-looking survivor of leukaemia and heart disease, who founded a service called Life Goes On, made a blunt reply: “It depends on what you think you’re worth.”
A brief silence fell. It was too close to the end of the day for this mysteriously jolting remark to be analysed, but it had pulled us up short, before we could drift into soft-lit fantasy.
I went out on a limb and said that my idea of a dignified death would be to cop a bullet for my grandchildren. We laughed, but rather wildly. People had had enough. At four o’clock we surged up the stairs into the remains of a tenderly sparkling autumn afternoon, the kind that makes you want to live forever.