Death doula assists at the end of life

To the uninitiated, the idea of a death doula may sound morbidly depressing. But to someone like Rafaela Joffe Peerutin, who has chosen this as her career, it’s not all doom and gloom.

Peerutin believes her life experience led her to this unusual career. She was a speech therapist in the National Health Service in the United Kingdom, working with the ill and disabled for 30 years, while looking after her daughter, Alexandra, who had a rare Jewish genetic degenerative neurological condition.

“There was always going to be a moment when she would pass,” Peerutin says of Alexandra, “and she needed full-time physical care. I was her main carer although I was working full time.

“As she got older, she literally couldn’t stand, she couldn’t sit, she was on oxygen. She would have seizures where she would stop breathing, and we would have to do mouth-to-mouth [resuscitation].” Alexandra passed away at the age of 24.

“At that time, I thought, there’s so much medical support, but there’s very little real emotional support, not only for me, but even for her as a young woman and as a child. There was never a conversation with any of us, such as, ‘Do you know this is a life-limiting condition?’

“Of course I knew, but it wasn’t a topic that was ever discussed. It was very lonely.”

When Peerutin came back to South Africa after Alexandra’s death, she started volunteering at St Luke’s Hospice doing grief counselling for the bereaved and spiritual care for the dying. She underwent “loads” of palliative care and bereavement care training there.

She also completed a “deeply intensive” grief counselling course in the United States. “It was cathartic for dealing with my own grief, but also gave me further skills,” she says.

About four years ago, Peerutin heard about death doula services, a relatively new field in this country. It’s much more well-known abroad, where death doulas are seen as a key component of a multi-disciplinary palliative care team.

Death and dying is being spoken about more openly rather than being the taboo subject it once was, she says. In the health profession, it’s becoming more mainstream to think of it as part of the services that need to be provided.

COVID-19 also played its part as it raised awareness of “people dying alone in hospitals without loved ones holding their hands.

“People want to think about preparing a little bit more. There are so many books and so much thinking about it now. People have become more receptive to it.

“The medical profession works so hard to keep people alive, but when there’s nothing more that it can do, it sends you away, and that’s actually when the person needs support. You can still live some form of a life, albeit different, to prepare you to come to terms with the situation and to be at peace with yourself emotionally, socially, psychosocially, and spiritually.”

Though the work she does is non-denominational, Peerutin would like to be involved with rabbis in this regard. She isn’t religious, but strongly identifies as a Jew.

“My grandfather was taken to the camps, which makes me feel very Jewish,” she says. Her mother, Helene Joffe, was a hidden child during the Holocaust, and she and her siblings consciously protected her by “not going there”.

“In a way, there’s always been grief and trauma in my life, and the body keeps score,” she says, referring to cell memory. “For me, it’s healing to help and serve others.”

Peerutin is involved from point of referral, all the way through to keeping an end-of-life vigil, if that’s what individuals feel comfortable with. Post death, she supports the family.

It’s a whole package, including washing the bodies. I see that as sacred, because when you’re working with someone who is on that journey, it’s such a privilege and so humbling.

Her service also extends to the unconscious, either through talking, reading, playing music, or employing “gentle touch”.

“I will sit and hold their hand, and be part of that journey all the way through,” she says.

“A 65-year-old medical professional met me when her cancer had metastasized,” she recalls of a “friend”, as she calls her patients. “She was still working and functioning highly.

“Initially, it was just getting to know her and chatting about what this journey may look like for her. As the visits progressed, she became more receptive to talking about the more emotional, psychological, and spiritual questions, and her anxiety, conflicts, and unresolved issues.

“We did sessions with her adult son. We made sure that they were sharing everything they wanted to share, whether it was getting the house sorted, the car, the logistics, the paperwork, the advanced care, or the living will.

“I met her and her sisters as well, doing a lot of resolution work around conflicts, and coming to a place of peace in the relationships.

“As the illness progressed and she became bedridden, discussion moved to who she wanted around her at the time of passing, as well as what she wanted for her funeral.” Peerutin started using essence oils to calm her anxiety, worked with the family, and gave her meditation tapes to listen to.

“I was present with her when she died, and stayed with the family for a while,” she says.

As for the essential qualities for doing this work, Peerutin lists “an open heart and vulnerability. You can’t be arrogant, you just have to be present, and not want to impose anything onto someone else. And obviously, compassion. Listening is important, not necessarily talking; being able to be still in a space that’s difficult. Being able to see someone ill and suffering, being able to face death.”

Peerutin finds joy in her work. “Creating a relationship is incredible, and when you know that the person is comfortable and sharing, that’s quite joyous. You’ll laugh at things together – it’s not all doom and gloom!”