THE LAST FRONTIER: positive conversations and new rituals for life’s end

Death is one of life’s few inevitabilities, yet most of us live as if we’ll be here forever. Trudie McConnochie meets three women at the forefront of the positive death movement and learns how we can take back a little control over the way we cross that f

The look on his face told her everything. Vashti Whitfield had rushed to Auckland where her rapidly deteriorating husband, Andy, was receiving acupuncture treatment designed to boost strength in cancer patients. But the Welsh-born actor, who had steadfastly refused to consider the possibility of dying, had now taken a turn for the worse, and Vashti was determined to bring him back to Sydney to die.

Although she’d ridden an unimaginable roller-coaster of emotions over the 18 months since Andy’s diagnosis of nonHodgkin lymphoma, nothing could prepare her for seeing her once-robust husband, the star of US TV series Spartacus, peacefully surrender to his final scene. Death, the inevitable fate that most of us spend our lives denying, was now claiming him at the age of just 39. And bearing witness to that remains one of the most powerful experiences of Vashti’s life.

“When I arrived in Auckland, he was sitting there in our friends’ home,” she recalls. “He was just staring out the window, smiling.

It was in that moment that I knew he’d started to die.

“All of a sudden he lost control of his bodily functions, which we knew was the ultimate thing that would happen. As I tried with my own body weight to get him into the bathroom to clean him up, he took a massive breath and flaked out, and I felt like he had gone. I managed to get him breathing again by shouting at him and he said, ‘You just need to let me go – I need to die’. I said in my loudest, bossiest voice, ‘You will ruin your children’s lives forever if you do not come back and say goodbye.

Whatever you have to do, you have to live a little bit longer’. It’s like he took this massive breath and breathed some life back into himself and came back, and we somehow got him back to Sydney.”

Three days later, Andy passed away in a hospice. He had time to say goodbye to his and Vashti’s children, Jesse and Indigo, who are now 14 and 12. This is a heart-wrenching story that Vashti has told many times, in her book, Spartacus and Me, as well as the beautiful and devastating documentary, Be Here Now, but it never loses its poignancy. Vashti knows that the way she was torn apart and built anew through the process of loss has gifted her something immeasurably valuable. Now, eight years after Andy’s passing, she is helping to shepherd others through the process of dying and grieving, while also empowering us all to talk about death in a way that’s meaningful rather than morbid.

“By exploring death and grief and loss we actually uncover purpose and opportunity and strategies and insights into how to live better,” she says.

Vashti explores this in her Matters of Life & Death workshops in Sydney and Melbourne. They’re a fitting adjunct to the work she does supporting individuals who are dying and their families. She’s also a guide at the organisation LifeCircle Australia, where she supports carers who are nursing people towards death. What Vashti finds in her work, over and over again, is that many people are afraid of death.

“We don’t, as other cultures and subcultures do, deal with death in a celebratory way,” says Vashti. “The way we hear about death is too often fear-based – it’s another

suicide bomber or it’s another terrible thing … If we can learn to embrace the idea that sadness can come from loss or grief, but simultaneously celebrate life and living, death or loss becomes something that is not morbid but something that we celebrate.”

Vashti is one of many voices challenging our collective head-in-thesand approach to death. The concept of ‘death positivity’, which began in the West 50 years ago with the work of Dr Elisabeth Kübler-Ross, is finally catching on. People are increasingly open to conversations about death and dying, which can diminish our squeamishness around the topic and help us to feel better about death so we can get more out of life.

As part of this grassroots movement, some are reclaiming traditional rituals around death that have been outsourced to hospices and funeral homes for so long. Jenny Briscoe-Hough, from Port Kembla, NSW, has set up a ground-breaking not-for-profit, called Tender, which facilitates at-home funerals from Wollongong to Sydney. Tender provides ‘cooling plates’ for bodies, allowing families to sit with their loved one at home. You must notify a doctor to obtain a death certificate, but you don’t have to contact a funeral director if you don’t want to. You can keep a body at home for up to five days (unless it’s an unexpected death), build a coffin, wash and transport the body yourself.

Perhaps one reason Tender’s approach to funerals has been so well received is that having the body of a loved one at home, bathing and dressing them, can be a wonderful way to gather and, amid both laughter and tears, say goodbye together. Some families create rituals involving music, poetry or prayers during this time. Some find it cathartic to decorate the coffin. You can buy them online, or in some states, from Costco stores. They’re available in wood, cardboard, wicker and other materials. Or you can build your own, but check the cemetery or crematorium’s requirements first. Another option is to create a handmade shroud for burial. This can be both beautiful and environmentally friendly, but bear in mind that a temporary coffin may be required for transport to the service, crematorium or cemetery (regulations for transporting a body differ for each state).

Meanwhile, social events where people gather to talk about death, including the Death Cafe series in Melbourne and Death Dinner Party in Sydney, are proving popular.

“I’ve seen a big change in the last few years,” says Ruby Lohman, co-founder of Death Dinner Party. “The way that we do funerals, very generally speaking, is cold and impersonal, and people are really starting to question that now. We’ve sort of questioned the way traditional weddings were done and changed wedding ceremonies into something personal and meaningful, and I think that’s just now starting to happen with funerals and with death. It’s like the final frontier.”

When Ruby was growing up, there was no shroud over the topic of death. As the stepdaughter of a funeral director, there were often flowers in her house left over from funerals, and she was regularly picked up from school in a hearse.

“Death was a very day-to-day thing,” she says. “I found it strange, as an adult, that so few people talked about it. It’s this huge thing that’s so significant in our lives, which people just seem to ignore.”

She started Death Dinner Party in April 2015 as a way of facilitating conversations about death over fine food and wine.

“It had very humble beginnings,” she recalls. “A friend was talking to me about the fact that her dad had just been diagnosed with cancer, and it was the first time in her life, in her mid-30s, that she had really been confronted with death, and she found that there was no one in her world who was willing to have a conversation about it with her.

“I’d heard about these events in the States where people got together over dinner and talked about death, and I just thought that sounded like my dream night out – eating good food, drinking wine and talking about death – not in a morbid way at all, but just as an interesting topic. So we said, ‘Well, why don’t we do one?’ and it went from there.”

Depending on capacity, between 18 and 50 people attend Death Dinner parties which feature speakers, such as grief counsellors, gravediggers, spiritual advisors and palliative care nurses, as well as discussion. The response from attendees has been overwhelming.

“Everyone’s been waiting to have these conversations, and here’s the space where they can do it,” she says. “I’ve had a couple of people get emotional. We always say at the start, ‘This can be a confronting, emotional topic. At any point, if you need to get up, get some fresh air, do whatever, look after yourself,’ but we also do make it clear that it’s not a therapeutic space.”

Dr Ranjana Srivastava OAM is very familiar with conversations about death. Over a 20-plus-year career, the Melbourne-based oncologist and internal medicine specialist has had to deliver the shattering news to scores of patients that their illness is not treatable. It’s a task that requires every ounce of her humanity – not to mention a careful weighing of how much ‘truth’ the patient wants to hear – and it never gets any easier.

Ranjana’s patients have taught her a great deal about how to live well. Although most leave a lasting impression for their gentle acceptance of their fate, as well as the graceful way they go about addressing unfinished business and constructing a legacy for loved ones, some are seared onto Ranjana’s memory for their blistering refusal to accept their story is suddenly coming to a close.

Many such encounters are regaled in her thought-provoking book,

A Better Death – Conversations about the Art of Living and Dying Well. Sally, for example, was a fortysomething mother who faced her death from cancer with such composure and grace that, as her father later told Ranjana, she “made

it easier for her family that she was dying”. But not everybody is so accepting of their fate. “I had a patient who walked out the other day and said: ‘This is ridiculous – I feel perfectly fine and you must be wrong’. He had widespread cancer and he just didn’t want to believe me.”

Death avoidance also shows up in the way healthy family members respond to a loved one’s diagnosis of terminal disease, Ranjana says. Recently she treated a young mother undergoing chemotherapy whose parents would text for regular updates on her treatment but didn’t visit her once, despite living in the same city.

Ranjana constantly encounters perplexed families struggling to divine how an incapacitated loved one might have wanted to spend their last days – a topic they had never discussed. Surveys show that between 60 and 70 per cent of Australians would rather die at home than in residential care facilities, but only about 14 per cent of people do so.

Ranjana recommends every Australian talk to their family members about the funeral they’d like and their goals for end-of-life care.

She encourages people to complete an

Advanced Care Directive (ACD), which is sometimes also called a living will. This can spell out the treatments you would like to have or refuse and preferences regarding artificial feeding, resuscitation, pain relief and life support. It’s invaluable if you become unable to communicate your wishes. An ACD also allows you to nominate who you want to make decisions on your behalf, your feelings about organ and tissue donation, where you want to be cared for in your final days, your values around dying and much more.

“I had a young woman fill out an Advanced Care Directive and write that in her culture it’s important for people to leave their shoes outside the door,” says Ranjana. “So she wanted that when she was dying, that when people came to visit her they be respectful and leave their shoes outside the door – and I thought that was wonderful.”

Some people facing death opt to enlist a death doula to assist with end-of-life decisions, funeral planning and managing communications, as well as providing emotional support and helping with after-death rituals and body care. Some death doulas work voluntarily with palliative care organisations, while others are independent workers and can be found online or via word of mouth.

According to Dying to Talk, an initiative of Palliative Care Australia, only 28 per cent of Aussies have had a conversation with their loved ones about how they want to die. In its Discussion Starter kit, it’s recommended you choose a quiet space with key loved ones where you are not likely to be interrupted. As an entry point, you could start talking about the death of a celebrity or someone you know – or perhaps even mention that you read this article in The Weekly – and say it’s prompted you to think about how you’d like your last days to play out. You don’t have to communicate everything in one conversation – once you’ve raised the topic initially, Dying to Talk recommends having ongoing conversations about your values and how they relate to the way you’d like to be cared for at the end of your life.

While such conversations may feel uncomfortable, they can be transformative. Beginning to break down our emotional barriers we’ve erected around death can in turn help us to live fuller, more vibrant lives.

“It prompts you to look at how you can live a life that’s more meaningful,” Ruby says. “You think, ‘Well, I don’t have much time, so this stuff that

I want to do, I better get onto it’. When you acknowledge that death exists and you can move towards accepting it, or at least getting a bit more comfortable with it, that really does change the way you live your life.”

For more, see A Better Death – Conversations about the Art of Living and Dying Well by Ranjana Srivastava (Simon and Schuster, $32.99). For Vashti Whitfield’s workshops, visit theschooloflife.com. Advice on ACDs available from advancecareplanning. org.au. There is a lot of useful advice at palliativecare.org.au. To learn how to start a conversation about death, visit dyingtotalk.org.au.

“I’ve seen a big change in the last few years. It’s the final frontier.”