Lee Umbers meets those whose work is to help the dying spend their last days as well as possible.

When Elizabeth Taylor, 91, needed help to stay in her home, son Peter set about ensuring the best caregiver.

While he and his brothers concentrated on guaranteeing the physical welfare of their mother, who had health issues, his sister-in-law Gail also wanted Elizabeth helped with the "end-of-life process", including its spiritual aspect.

"We moved our mindset from feeding mum and taking care of mum to helping mum through that journey," Taylor says.

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That's when the family turned to Carol Wales.

Wales is an end-of-life doula – part of a rising movement promoting greater compassion and companionship for people nearing death.

End-of-life doulas, also known as death doulas, empower those in the final stages of their lives and their families.

They help create death plans, provide spiritual and psychological support, listen to and advocate for them.

The word doula derives from an ancient Greek word for a woman of service, but both genders perform the role.

Wales, who Gail knew of, supported Elizabeth for around a year before she died, including moving into her home in Whangaparāoa where she was both caregiver and doula.

"We had a lovely relationship," Wales says.

"She just kept saying she loved me".

 Elizabeth Taylor, known as Beth, found comfort in her relationship with doula Carol Wales.
Elizabeth Taylor, known as Beth, found comfort in her relationship with doula Carol Wales.

Peter Taylor says Wales took great care of his mother and her role as a doula was invaluable for Elizabeth and the family.

"She [Wales] just opened my eyes to the fact this was a process as natural as childbirth.

"It's going to happen, so let's make this special.

"It took me a few weeks to process it. That the death process or journey was something that maybe should be embraced."

Taylor says his mother was able to have conversations with Wales and Gail "that she couldn't have with her boys".

"I think she probably just thought that she'd freak us out."

"Carol being there and being able to pick up on those times where mum needed comfort or guidance was just so important to the quality of mum's last year."

Wales, a celebrant, conducted Elizabeth's funeral.

Taylor says it was precious hearing her "talk about her friend Elizabeth".

"Carol holds a special place in our hearts."

Taylor had not heard of an end-of-life doula before Wales. He would recommend that support.

"It certainly brightened up mum's life."

Preparing for the end of life

Wales has supported around 25 people, aged in their 50s to 90s, around Auckland as an end-of-life doula (or companion for the dying) over the past five years – one for her last two weeks of life, others for more than a year.

She has helped draw up advance directives – legal documents in which a person specifies what actions should be taken for their health if they are no longer able to make decisions for themselves because of illness or incapacity.

It can include how they want to be medically treated, what kind of funeral they want and what music played at it.

An end-of-life doula is a non-medical role.

Wales is 18 months into completing a two-year remedial massage course so she can help as a doula in hospitals and hospices.

She also started a Death Cafe in Westmere, where people met monthly over tea or coffee and a cake to talk about death and dying, to help themselves and others become more familiar with the end of life.

Wales says when she first started as a doula, she couldn't locate any others in New Zealand. She says she now knows of about 30 performing that role – as volunteers and in paid positions - although not necessarily identifying themselves by that term.

She intends to create a directory of end-of-life doulas to make it easier for the public to locate one.

Helen Callanan leads the Australian Doula College's end-of-life training.

Callanan, founder of Preparing the Way, which presents the training in collaboration with the college, says two people from near Auckland are about to start her one-day Foundation Workshop.

She has also fielded around a dozen further enquiries from this side of the Tasman and is planning to come here early next year to hold the workshops and a three-day Preparing Your Way course.

She says the movement – already established in the UK, Canada and the US – has rapidly expanded in Australia.

She says when she appeared on a current affairs show there in 2016, there were 50,000 hits over the following 24 hours for the college.

Melbourne-based Callanan, who has a degree in traditional Chinese medicine, had been caring for those close to death as a professional Reiki practitioner.

"I started working with people who were really ill, dying and terminally ill," she says.

"I started to do all the work of a doula without knowing there was such thing as a doula."

Callanan, 58, learnt the term through colleague and friend Renee Adair, founder of Australian Doula College, who was studying Reiki with her.

She says she and Adair, an experienced birth doula, swapped stories about births and deaths and realised similarities in their roles.

"She did the first breath – the incoming, and I did the last breath – the outgoing.

"Similar issues are present at times of major transition."

Callanan says a doula is there not to direct but "to companion, to champion".

When someone is facing death, for them and their family "there's often a lot of fear, a lot of uncertainty, a lot of confusion".

"It can be overwhelming."

But it was a great source of relief and comfort "to have someone by your side, to [say] 'I know you can work through this. I'm going to support you, stand beside you."

Callanan believes our readiness for death is poor.

She says death does not have to be scary.

"There's a relatively new term … called conscious dying, where people use the dying process to expand themselves, to heal the past, to become more loving and compassionate - with people in their lives.

"So they actually use it as a healing process."

'I wanted them to know someone was there with them'

Wales, 63, says the motivation for her to become an end-of-life doula came from supporting her mother through 12 years of care including rest homes before her death in 2012.

"I saw people die on their own. I wanted them to know there was someone there with them.

"It's such a comfort [to them] - just sitting there holding someone's hand or just talking to them gently."

"End of life doula" Carol Wales in her home in Onehunga. Photo / Nick Reed

Wales has been present at the moment of death of a number of those she has supported and seen how "in that last moment" or just before, they "have suddenly gotten calm".

She says she has never been afraid of death. Her first experience of it was with her family cat, who she fetched water for and stayed with as he neared his end.

"I just knew that I wanted to acknowledge his life. I was only about 7 at the time. It was really important to me."

After her mother's death, Wales, who has volunteered at hospices, completed an online end-of-life education course and began doula work.

People she has been a doula to have told her how much they appreciated her being there. One called Wales "her angel".

She has become and stayed friends with family members.

A woman who died of cancer asked that she be a caring female figure for her daughter after she passed.

Wales has supported people of different ethnicities and faiths including Catholic, Buddhist and no religious belief.

Uncertainty about what lay after death was common.

Even if people hadn't had a religious upbringing "we've always heard about sin and hell".

"Those things sit with us. It's a conversation that comes up with a fear around that."

One woman "had lived a life that didn't have too many issues". But "the questions still came up around where am I going and would there be any penalties [for] some of the things she'd done".

The woman told her their frequent conversations about that had allayed her concerns, Wales says.

The end-of-life process can also be a time of relationship resolution. "I call them the bridges of forgiveness."

She has acted as an intermediary between the person and their family, giving them space from each other when necessary and "bringing them together, and helping that person release".

"It's like sometimes that builds and it's sitting on their chest, just wanting something to be said, and once that's happened, then they feel ready.

"It's so lovely to see people resolve that before they go."

Called to the work

In Australia last year it was reported that more than 70 per cent of people there would prefer to die at home but less than 10 per cent do.

"We used to take care of our dying and our dead at home," Callanan says.

The person who died "was laid out in the front room ... and everyone came and paid their respects and then you buried them".

"But about 90 years ago we outsourced death. We sent it to nursing homes and aged-care facilites and funeral directors and hospitals."

That is unsustainable with our rapidly aging population, "the silver tsunami", as there won't be enough hospital and rest-home beds to cope, she says.

"Death has to go back into people's homes."

Callanan says death has come to be viewed as "an enemy to be vanquished".

"Think about the languaging – 'they lost their battle'.

"We have lost the understanding that death is actually a part of life. It's the only thing that you can absolutely count on."

But people often didn't prepare for it.

"We plan for our weddings, we plan for our holidays, we plan for our retirement. [But] we don't plan for our death."

Callanan has taken around 350 people on her Foundation Workshops, which she holds around Australia and online, with more than half going on to take the three-day courses which are face-to-face.

People wanting to be end-of-life doulas "feel called" to the work.

"Most people run from death, so the people that come and look at this really are people who are really keen to do something to make a difference."