End-of-life doulas provide a new
type of caregiving to patients and families
by Gatwiri Muthara, AARP, Updated October 8, 2019
En español | Cheri Rigby always knew she
wanted to work with the dying.
As a registered nurse, she was exposed to
death frequently, but she believed that more support was needed for those who
were facing it. Through an unfortunate circumstance, she was given the
opportunity to make a difference.
“There was a tragedy — one of my very best
friends,” Rigby says. “Her daughter was a special-needs child. She choked on a
Fruit Roll-Up and died.
"This was a little girl who was at my
house all of the time; we spent a lot of time together. When Sophia died, I was
sort of the closest person to that, because my friend didn’t have any immediate
family," Rigby says. "It was a life-changing experience for me. I saw
that raw emotion firsthand with my friend, and quite honestly, instead of it
scaring me away, it drew me in.”
“There’s a lot of medical support in dying, and there’s some
emotional support, as well, but I find that death doulas do a great job of
tying it all together." — Death Doula Alua Arthur
For Alua Arthur, it was meeting a stranger on
a bus in Cuba, a young lady who was dying of cancer. Arthur says she engaged
the woman in conversation about her inevitable death, and it sparked a fire
that she says could not be contained.
“I thought, 'Wow. We’re all going to
do this at some point. Why aren’t we all talking about it now? Who are the
people to support people through this?' On that bus I got super clear this
was going to be my work, yet I didn’t really know how.”
Arthur and Rigby eventually found their way to
becoming what is called an end-of-life, or death, doula — a professional who
provides nonmedical caregiving services to people who are dying and to their
families.
'Death midwives' complement hospice
Many end-of-life doulas, also known as death
midwives, say they complement the care from hospitals, senior-care facilities
and hospices, as well as fill in the gaps that
occur during the dying process.
“Although hospice is wonderful in the death
and dying field, they don’t have the hours and hours and hours that the doulas
have to really, deeply, get into this work,” says Janie Rakow, a practicing
end-of-life doula for nine years and president of the International End of Life
Doula Association (INELDA).
How doulas assist
End-of-life doulas can provide several services to your loved
ones and their family:
• Calming the terminally ill through
guided visualization
• Comfort for the dying through massage
• Coordination of care
• Helping with legacy projects to
memorialize the life of the soon-to-be deceased
• Respite care for family members
• Vigil planning
• Vigil sitting
“There’s a lot of medical support in dying, and
there’s some emotional support, as well, but I find that death doulas do a
great job of tying it all together and having knowledge about a vast array of
subjects,” says Arthur, who has been a death doula for five years.
End-of-life doulas bring their skills and
expertise to various environments.
“For the most part, I would envision that
doulas would be practicing at someone’s home,” says Francesca Arnoldy, lead
instructor in the University of Vermont End of Life Doula Professional
Certificate program. “(It's) caring for someone who would want to die at home,
ideally with the support of hospice or palliative care, who then adds the doula in as
an additional layer of support.
"But a doula can be hired to go into an
assisted living facility or independent-living facility or even a respite
house, hospice house," she says. "All of those are also options for
doulas.”
Larner College of Medicine at the University
of Vermont and partner Cabot Creamery Cooperative offer an eight-week online
End-of-Life Doula Professional Certificate program.
“Our program is comprehensive. On average,
people probably spend about 80 to 100 hours on this work,” Arnoldy says.
The first thing an end-of-life doula does is
work with the client to determine the services needed.
"[End-of-life doulas] figure out with the family where they
are at, what do they need, what’s causing them to become overwhelmed, what kind
of services are they looking for.” — Merilynne Rush, co-owner of the Lifespan
Doula Association
"They figure out with the family where
they are at, what do they need, what’s causing them to become overwhelmed, what
kind of services are they looking for,” says registered nurse Merilynne Rush, a
practicing doula for 10 years and co-owner of the Lifespan Doula Association.
“Different doulas offer different kinds of services.”
Care for stressed-out families, too
But a doula can see the big picture when
family members might be overcome with emotion, sleep deprivation and stress,
Rigby says.
“It’s being present enough to know what the
patient and the family need — things like hand massage, foot massage,
encouraging self-care for the family,” she says. She recently completed the
University of Vermont program. “It’s not just about you and the dying person.
You have to be able to read the situation well enough to fine-tune things.”
Many end-of-life doulas find similarities
between their role and that of the more commonly known role of a doula, aiding
with childbirth.
“Waiting for a baby to be born and waiting for
a person to die are very similar in terms of the skill set required,” says
Patty Brennan, an end-of-life doula with a background in birth and postpartum
midwifery, and co-owner of the Lifespan Doula Association. Both circumstances
require the ability to be fearless, patient and calm.
No government certification program
End-of-life doulas have no credentialing body,
but programs such as those offered by INELDA, the Lifespan Doula
Association and the University of Vermont offer training and
certification.
Rakow, the INELDA president, says a demand for
this type of doula service led to the creation of her organization, which,
along with training and certifying individuals, educates organizations such as
hospitals, hospices and senior-care facilities to start their own programs.
“People were hungry for it," she says.
"We kept hearing from people, ‘How can I learn about this? Why doesn’t
this exist anywhere else?’ “
“Waiting for a baby to be born and waiting for a person to die
are very similar in terms of the skill set required.” — Patty Brennan, co-owner
of the Lifespan Doula Association
Some doulas have private practices, and others
work in connection with hospices, hospitals and community organizations.
“We try to forewarn people that if you’re
planning to become a private-practice doula, it’s really going to take
initiative,” Arnoldy says. “You’re going to have to develop your business and
your role in the community and your reputation. You’re not going to look in the
newspaper and find a job ad.”
'People don't know it exists'
In addition to services provided, many are
spreading the word and trying to teach the public more about death and the role
of a doula.
“Word of mouth has really been useful, but
also creating opportunities for people to learn about the work,” Arthur says.
“I think part of the reason why we’re not inundated with requests is that
people don’t know that it exists. A big part of my work is in public education
— letting people know that these services exist and that there are people to
support them in their time of need.”
And practitioners say the work is its own
reward.
“It's not depressing,” Rigby says. “It’s very
powerfully motivating. It’s like a wake-up call that feeds your will to live
fully. This is a common thread that folks who work with the dying understand.”
This article, originally written in 2018, was
updated with services provided.
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