What do end-of-life doulas do?

Over the past four years, terminal ovarian cancer has been shoving Cora Torr, 61, towards life's exit door.

It's a life that includes a husband, six children, four grandchildren and some thrilling years as an air force medic.

To offset this rude, cancerous intruder, Torr - who lives in Christchurch - enlisted the help of Sarah Campbell-Simpson, an end-of-life or death doula. It's an emerging profession that provides a varied service.

The two have been on what Torr calls "adventures", including visiting the crematorium that will incinerate Torr's body when the time comes (the operator was amused to meet his future client ahead of time and very much alive).

They've had chats about the body's process as it shuts up shop. Campbell-Simpson has helped co-ordinate the paperwork (dying is surprisingly high admin). She is a support to Torr's friends and family now, and will be after her death.

"The more I have walked this path and understand what it means to die with dignity, to have your loved ones be okay and helped when they need to be, it's all about knowledge. It's all about talking and communicating," said Torr. "I just feel having a doula has made my life and my family's life so much easier."

If all this cozying up with death seems a bit much, an end-of-life doula might be for you. While there are about two dozen end-of-life doulas operating in New Zealand, it is part of the emerging death-positive movement sweeping through industrialised countries where death has become an awkward subject shrouded behind curtains.

End-of-life doulas typically go through months of training to facilitate open conversations the dying might crave, handle the practical elements, and advocate for clients' wishes before and after death. They're there for the dying - whether assisted, natural, through illness, accident or other - as well as supporting their friends and family. They provide a buffer to the sales-tactics common in the mainstream funeral industry.

'Lost our connection with death'

"It is a really lonely place to be in when those around you don't know how to navigate the landscape of dying," said Rachel Mellor, 48, who also lives in Christchurch and has terminal bowel cancer.

She hired Campbell-Simpson (death doulas typically charge around $65 an hour in New Zealand with wiggle room on compassionate grounds) and has found her to be "kickass with administration and care and advocacy and support and it makes such a difference to how I am experiencing it now".

When RNZ called Mellor, she was listening to the day three radio coverage of Kiingi Tuheitia's tangihanga. "We tend not to do that," she said as a Pakeha reflecting on how Māori do death differently and arguably better.

Treza Gallogly, a trained nurse based in the Auckland area, stumbled upon the occupation of end-of-life doula after she supported a friend through death, which included an eight-day stay in hospice. She is one of the co-founders of the End of Life Doula Alliance of Aotearoa that was formed this year.

"For centuries, we looked after our sick and dying relatives in our homes and it was only around the beginning of the 1900s when the wars were happening that all of this changed," Gallogly, told RNZ's Nights in an earlier interview. "Health care became more accessible, hospitals were springing up, funeral homes came into play and lost our connection with death."

'What happens to someone's body?'

Gallogly supported Carolynn Whiteman, 73, and her family as motor neurone disease closed in. Whiteman opted for an assisted death last August.

"We didn't really know what on earth we were doing," said Whiteman's daughter Sonia, a filmmaker in Sydney. "[Gallogly] filled in the gaps. 'Have you thought about this or thought about a funeral' or what happens to someone's body.'"

Gallogly helped put Whiteman on a large ice pad so the family could be with her body in the 24 hours after death. Whiteman didn't want a funeral and decided on a cardboard coffin.

"It is a pretty personal, intense experience that you go through with someone so I think it takes a particular type of person to do that," said Sonia, describing Gallogly as "supportive but not intrusive."

Role playing death

Campbell-Simpson, the Christchurch-based end-of-life doula, did her training last year after selling her food distribution business. She finished an online course this year through the Australian company Preparing the Way that took 20 hours a week over four months.

Would-be death doulas are trained in a range of scenarios from assisted death to infant death to unexpected death. They are taught advance care planning, vigil planning, funeral guidance and how to get comfortable with those uncomfortable death conversations.

Campbell-Simpson roped her family into the role plays she had to film for review by teachers. One scenario, a home-based death vigil, had her son, 10, in bed as the dying person (he fell asleep). Her husband and 14-year-old daughter were the family members in need of support from a doula.

"At the time, I was thinking 'My poor family,' said Campbell-Simpson, "but actually, it has created a lot of good conversations and I think they kinda liked it and they get it now."

'Things are changing quickly'

A few days after RNZ interviewed Torr over the phone, Campbell-Simpson sent a text. That cancerous intruder was getting pushy with Torr. She was fatigued and sleeping a lot.

"Do you have a feel for when the article might be ready or drafted?" she wrote in a text. "It would be special if she got the opportunity to read it if at all possible."

"Things are changing quickly and the signs point to her entering her dying," she added.

This led to RNZ moving to hurry this story along. The exchange was an example of what end-of-life doulas do: advocating for the clients in their last breaths and beyond.