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'She is essential': B.C. death doulas calling for their services to be covered under MSP

A mother says she's survived the loss of her 30-year-old son thanks to her death doula.

Navigating the death of a loved one can be an overwhelming experience, one made more complicated and difficult in a pandemic.

In British Columbia, more people than ever are reaching out to specialists called death doulas to help process death.

Dr. Linda Franchi has been working in the industry for more than two decades and says she’s often called when a family or individual receives a diagnosis. 

“We assist individuals walking through all the practicalities, companioning, departure directions, assist family,” she says. "We see death as a process rather than an event.” 

From her own experience, Franchi says many people don’t want to talk about death until it's knocking on their door.

"I certainly believe death is part of the life cycle,” she says. “Nobody is getting out of here alive.”

Similar to a birth doula, these specialists work closely with clients; they not only prepare for the death but also create conversations with family and people closest to the person who's going to pass.

"We help them be with death and then assist them to find out what is really important and what is most valuable for them and we help them follow through,” says Franchi, who works on Vancouver Island.

Another death doula and death educator who works in Vancouver says her job is to make the dying experience as sacred and as rich as it could possibly be. 

"We all have wishes. They don’t necessarily all get fulfilled, but if we can get closer to that then we’ve made the death experience better than it might have been,” says Karen Hendrickson, co-founder of the Death Doula Network of BC.

"It’s becoming more common; there are certainly a lot more individuals showing up in this space taking death doula training and wanting to find ways of being in service this way,” she says.

FILLING GAPS IN MODERN HEALTH CARE

It was 2018, on Mother’s Day, when Moni Steele learned that her son had aggressive Stage 4 Hodgkin lymphoma.

She still remembers the day vividly. 

"I am not the first mother to hear that my child has cancer and I won’t be the last,” she says through tears.

Brayden was diagnosed at just 28 years old. 

"It’s been my honour and I will always be his mom. He asked me before died, 'Will you be my mom when I go?' And I said, 'I’m your mom in every lifetime.'" 

Looking back on his treatment, Steele didn’t know what an oncologist was until she was told her son needed one.

"I knew nothing about cancer. When the doctor said oncologist, I didn’t even know what that meant,” she recalls.

Over the course of the next two years, they’d see countless doctors and nurses, trying to navigate an incredibly challenging and scary time. Steele didn’t want to burden her friends or her son with her grief so she looked for help outside of the hospital. 

"I didn’t want to burden anyone with my own shattered heart,” Steele tells Glacier Media.

She found Hendrickson and says if it wasn’t for her, she wouldn’t have survived her son’s death. 

"If it wasn’t for Karen, I’d be with Brayden. This knocked me,” she says. "Karen provided not only the gap that was completely missing but the emotional part.”

Her death doula provided constant support, any time of the day, something she felt was lacking during her son's treatment and death. 

"There wasn't any fear in my heart. I knew I wasn’t alone. She is necessary. She is essential.” 

Steele describes her experience with the death doula as informative and supportive. Hendrickson also made her son comfortable. 

“He was scared, he had fears,” she says. "She was diligent, loving, compassionate, honest, kind, truthful and very, very in-tune.”

On Dec. 23, 2020, when his time came to pass, Steele used what Hendrickson taught her to process her son's death. 

“She set my heart to some kind of ease. I saw my boy's passing through,” says Steele.

The next day, Hendrickson brought Steele a transcription of a conversation she had with Brayden that he wanted her to have once he died. 

"Which nurse would have done that for me?” 

ARE DEATH DOULAS COVERED UNDER MSP? 

Hendrickson strongly believes everyone's death belongs to the individual and they have a choice in how it happens. 

"I think society as a whole is recognizing that our health-care system has gaps... so how do we fill those in a way that really holistically takes care of the emotions of the people?” she says.

Through COVID-19, people are more aware of their own mortality and death, she added.

“It is a reality that we do die and how can we find ways to embrace that and prepare for it?” 

Franchi believes her profession should be covered under provincial health insurance.

"We would like death doulas to be covered under medical care in each of the provinces in the country because we believe that this service, non-medical service, is a benefit to palliative services, to medical services,” she says.

Glacier Media asked the Ministry of Health if death doulas would be considered under B.C.'s Medical Services Plan, and was told it's not being considered as it's not “medically necessary.”

In a written statement, a ministry spokesperson said "MSP covers the cost of medically necessary insured doctor services.”

"However, we offer many supportive and compassionate end-of-life services that focus on comfort, quality of life, respect for personal health-care treatment decisions, support for the family and the psychological, cultural and spiritual concerns of dying people and their families.”

Adding, these services include care coordination and consultation, pain and symptom management, community nursing services, community rehabilitation services, home support, respite for caregivers and hospice care. 

"Advanced-care planning is also a crucial component of end-of-life planning and care,” reads the statement. "Advanced-care planning gives capable adults the opportunity to record and communicate their wishes and preferences regarding future care.”

Hendrickson is quick to point out the health-care system provides significant support and resources, but that it's taxed.

“So what happens is, there isn’t time to deal with the emotional and holistic elements that both patient and their family needs,” she says, noting that's when a death doula can come in and help mediate conversations.

WHAT IS THE DURATION OF CARE? 

Each doula experience is different, say Hendrickson and Franchi.

Most death doulas cost $50 to $100 an hour per person and stay with the family or group of people for about two months to seven months.

“It really depends on how much presence and how much is needed and how many people,” says Hendrickson. “Often, we get contracted with the person at the centre and then their members around them.”

Death doulas come from a variety of backgrounds, says the pair. The can gain certification through a number of programs, including Douglas College, Institute for Traditional Medicine, Durham College and the Home Hospice Association.  

"Doulas are here to support you to walk the road with you... to get all your papers in order so you’re not scrambling," Franchi says. 

For Steele, she was able to hold her son in her arms as he died at home.

"I am his mom so I am allowed to say it: It was a good death,” she says.