Death literacy and dying at home
For four days Tarpie Watts’s body was laid out in the chilled bedroom of her Blue Mountains home, covered with her favourite purple sarong. She had treasured the garment during her long life, so it felt right to her family that she should have it now, in death.
Sue Langfield, Watts’s 68-year-old daughter, visited her several times a day. She lit candles and arranged fresh flowers; armfuls of jonquils and daphne picked from the garden. “I spent time with her. I sat and held her hand. I talked to her, sharing special memories. She had so much peace in her face; she just looked beautiful,” Langfield remembers fondly.
Although some people may find the idea of having a dead body in the house confronting, Langfield says there was nothing creepy about it. In fact, she believes spending time with her mother’s body helped her to move through the grieving process. “It made her death more real. I could see that she was dead and gone. It gave me time for reflection.”
Langfield was clear from the outset that she wouldn’t be handing her mother over to a funeral director. She did her homework, long before Watts’s health began to deteriorate, and discovered that it was legal to keep the body for five days, as long as it was kept cool and a doctor had provided a death certificate.
It turned out to be a very healing experience for Langfield and the rest of the family.
“After her death, we picked out some nice clothes for her and gave her a wash with nice-smelling soap. We put cream on her and did her hair the way she liked it. We put her best jewellery on her. We took our time and treated her gently, as if she were still alive.”
It was the ending that Watts, who was 94 when she died, had envisaged. Peaceful, surrounded by her family and, most importantly, at home.
A recent report from the Productivity Commission found that more than 70 per cent of Australians want to die at home. Despite this, less than 10 per cent are able to have their wish fulfilled. There are a number of reasons for this discrepancy. Social policy commissioner Richard Spencer says that one issue is that doctors who work in acute hospitals find it much easier to continue active treatment rather than make a decision to stop.
“Once they are on the hospital ‘conveyor belt’, patients approaching the end of life, and their families and carers, can find it hard to understand whether or not hospital is the best place for them and, if they would prefer to forgo certain medical interventions, can find it hard to express those preferences,” Spencer says.
In addition to this, and perhaps more crucially, Spencer says we need to see vast improvements in palliative care. “Only a small proportion of people who would prefer community-based palliative care have access to it in a way that meets their needs.”
As Langfield will attest, the reality of enabling a person to die at home takes a lot of planning. Recent research from Western Sydney University found that on average a network of 16 people is needed to facilitate a home death. Not all of these people will have hands-on roles but from medical practitioners to logistical and emotional support it is a team effort.
You don’t need permission to facilitate a home death, but Liz Callaghan, chief executive of national peak body Palliative Care Australia, notes that it’s important to have medical back-up on call. “You need a safety net – someone who you can call 24 hours a day who can come and assist if something goes wrong,” she says.
That support can come in the form of the family GP or a specialist organisation such as Silver Chain, a non-profit organisation that provides community health and care services, including palliative care. It has been successful in facilitating 75 per cent of its clients in Western Australian to die at home. It is recognised nationally as a best-practice model of community-based palliative care.
In addition to its interdisciplinary respite care, access to community-based medical teams and equipment – such as hospital beds and portable commode chairs – a big part of Silver Chain’s remit is to provide bereavement support. “We support people through some of their toughest times,” says director of clinical operations David Larmour. “Chronic and terminal illness is a confronting issue, so we make sure our services are available to everyone involved.
“Caring for someone with a life-limiting illness can be physically and emotionally draining. Sometimes the best support people can receive is knowing that there is someone available to help manage the load of caring for a loved one.”
Silver Chain is one of the 225 non-profit community care services listed in the directory of Palliative Care Australia. Despite this seemingly abundant supply, the sector is woefully underfunded. There is also a massive discrepancy in the palliative care services that are available outside the major centres. It’s easy to see why the provision of palliative care remains a bit of a postcode lottery. It’s worth noting that even in communities where government-funded palliative care services are available, there are other costs – such as extended periods of unpaid leave – that could be prohibitive for many families.
But there is another issue. In a recent survey by Palliative Care Australia, 83 per cent of respondents agreed that Australians are uncomfortable talking about death and dying. This is a big problem when it comes to end-of-life care – leaving the conversation too late means it might not be possible to arrange a home death.
This was never an issue for Langfield and her mother. “We talked about all this stuff years before she got old, and we talked about it again when she went into a nursing home. Even when dementia started to take hold she was still certain that she wanted to come home to die,” she says.
Armed with her mother’s wishes, Langfield made an end-of-life plan for Watts that included moving her back home as she neared the end. This forward planning meant that Watts was able to spend her final weeks at home before she passed away. Practical support came from staff at Watts’s nursing home and the family GP who called twice a day. In addition to this, different family members kept a vigil “in shifts”.
“Every day we sat with her and just talked. It got to the stage where she couldn’t join in, but I think it was comforting for her. She seemed so peaceful,” Langfield says.
Although most of us fear death, Langfield wasn’t apprehensive about losing her mum. “I was with her the night that she died. You hear about the death rattle, and it’s sort of true – her breathing was funny. I cuddled her and she just went.”
Afterwards Langfield woke her husband and daughter and the three of them sat with Watts as her body turned cold. While they talked and cried together, they also shared a sense of gratitude that she had experienced the good death they had all hoped for.
Kerrie Noonan, director of Dying to Know Day (on August 8), is passionate about improving death literacy in our society. She says that although death is still a taboo subject, it’s important for families to talk about their end-of-life wishes. “They can be difficult conversations to have, but to create a good end-of-life experience it’s important to start talking early in the process before we are forced to have the conversations with strangers in a hospital,” she says.
How do you begin such an emotionally charged conversation? Noonan’s advice is to approach it the same way you would approach any other important life event. “Make a plan and talk with your family about what you want,” she says.
Langfield, who has become a bit of a “good death” activist, echoes this when she says talking about death is essential. “It’s such an important thing to talk about. You plan your holidays, you plan your shopping list, you plan lots of things – so why don’t you plan your death? It’s probably one of the most important things you’ll ever plan,” she says.
“We’ve all got an end date. We need to talk about death so that when the time comes everyone is on the same page.”
This article was first published in the print edition of The Saturday Paper on Jul 29, 2017 as "Last rights". Subscribe here.