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14 CARING FOR THE AGES DECEMBER 2016
Geri Topfer experienced “extreme
pain, agony, sadness, fear, and de-
pression” when her 73-year-old mother
died recently. But she was able to balance
her grief and loss with an “abundance of
gratitude, love, and joy,” due in large part
to the presence of an end-of-life doula.
End-of-life doulas are care team mem-
bers dedicated to serving patients and
families during the time a patient is
actively dying. They support the dying
patients and their loved ones with a
unique focus on planning, resolving
issues and unfinished business, conduct-
ing vigils, and reprocessing the death
with loved ones afterward.
“This was started in the early 2000s. We
thought that this is so valuable for births,
why not for deaths? We created a model
and brought it to hospices,” said Janie
Rakow, president of the International End
of Life Doula Association (INELDA).The
concept soon
took off. “We
have trained
a p p r o x i -
mately 250
doulas in the
last year and
a half alone,
and we’re
training more
every month
all over the
country. We
Janie Rakow also are con-
tracting with
many hospi-
tals, hospices, and communities. This is a
growing field,” said Ms. Rakow.
Typically, doulas are volunteers at hos-
pitals or hospices, but they are specially
trained, educated members of the care
team. They participate in team meet-
ings and interact with staff on a regular
basis. “Often, we meet with staff to share
updates and discuss issues or concerns
that arise. Nurses and social workers are
especially happy to have us involved.
Their plate is so full, and we can alleviate
their workload by helping with quality of
life and comfort issues,” Ms. Rakow said.
Personal Choice, Personal Plan
Patients and families can always refuse
a doula’s services. When they say ‘yes,’
the doulas will customize their involve-
ment to the family’s wishes and needs.
“Sometimes, families will be unsure at
first, but they come to be beyond thank-
ful for the doula’s involvement. We sit
with the patient so the families can get
rest or go eat. We talk to family mem-
bers about funeral planning, addressing
loose ends, and finding ways to honor
their loved one. Sometimes, we just sit
and talk with them. We often get deeply
involved in their lives,” Ms. Rakow said.
For example, “We had a family whose
mother was dying of cancer,” she recalled.
“We were called in pretty early, so we
got to know her and the family quite
well. Her daughter was concerned about
how she could honor her mom’s life. We
talked and decided on a memory book.”
The daughter emailed relatives and asked
them to share stories about her mom and
compiled these in a tome. Ultimately,
the family presented the book to their
mother at a holiday dinner. The mother
kept the gift by her bed, and the doulas
would “read these beautiful memories
to her as she was dying. The family
was present for the final minutes, and it
was a beautiful, beautiful passing,” Ms.
Rakow said.
‘We sit with the patient so
the families can get rest or
go eat. We talk to family
members about funeral
planning, addressing loose
ends, and finding ways to
honor their loved one.’
Emotions can be high and feelings raw
when a loved one is dying, but the doulas
try to avoid the role of referee.
“Sometimes there is infighting among
siblings and other family members,” Ms.
Rakow said. “We try to remain neutral
and stay out of family dynamics, but
sometimes we get pulled into situations.
Families may forget their loved one is in
the room dying, and we have to remind
them that we are there for the patient
and that person’s comfort. We will
respectfully ask them to continue their
conversations outside of the room and
away from their loved one.” If necessary,
the doula will recommend counseling or
talk to other members of the care team
about additional support for the family.
The doula’s focus on ensuring a posi-
tive end of life can be a powerful tool. “I
was working with someone whose wife
wanted to die peacefully at home,” Ms.
Rakow said. “I was present when she was
dying.” A relative on the scene called 911;
when the EMTs arrived, they confirmed
that there was no pulse. “Instead of trans-
porting her to the hospital, we made sure
she stayed at home — where her husband
was able to remain by her side while
family gathered and other arrangements
could be made,” she said. The situation
quickly went from chaotic to peaceful.
Doulas and Doctors
Accepting the inevitable death of a patient
can be challenging for physicians. “I
found that my job is easier when I have
the doulas to fall back on,” said Charles
Vialotti, MD, a radiation oncologist affili-
ated with Holy Name Medical Center
and Englewood Hospital and Medical
Doulas Partner With Practitioners
to Support Peaceful Dying
Joanne Kaldy

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Center in New Jersey. “They fill a needed
role and do work that is so enriching for
people. As for physicians, they help us
look beyond and not take personally our
inability to cure all patients. The doula is
a wonderful adjunct.”
‘They help us look beyond
and not take personally
our inability to cure
all patients.’
Even with the patient’s best interests at
heart, physicians and other practitioners
often don’t have the training or time
to sufficiently be helpful at the end of
life. “I rely on the doula. They bring
skills and talents that we don’t have.
They know how to create a legacy for
the patient, help families resolve issues,
and enable everyone to find peace when
a family member or friend is dying,”
said Dr. Vialotti. The doulas also know
the patient’s and family’s needs and con-
cerns, and can alert other team mem-
bers who can provide care and support.
Additionally, “The doula continues to
offer support to the family after their
loved one’s death if they want it,” Dr.
Vialotti said. “This is something we
weren’t able to do before.”
The doula should be embraced as part
of the care team, Dr. Vialotti empha-
sized. “We have a weekly community
hospice team, and the doulas provide a
report about what they have observed.
Additionally, they will come directly to
the case manager or me if they have a
question or concern.”
Dr. Vialotti stressed that the doula’s
impact can be measured as part of qual-
ity improvement. “You can look at spe-
cific outcomes, such as family members’
functional and anxiety levels, their satis-
faction with a loved one’s care, and their
feelings about the person’s death,” he
said. A doula’s presence also may result
in an increased use of living wills and
advance directives. “We can measure all
of these things to determine if people are
properly prepared and supported at the
end of life,” he said.
Not only can doulas play a power-
ful role in care, Dr. Vialotti said, they
don’t add to the facility’s financial bur-
dens because most are volunteers. “They
are well trained and extremely skilled
and professional, but they come to us
as volunteers and through nonprofit
organizations.”
Choreographing Final Days
Ms.Topfer was fortunate. She had a large,
close family who were able to be with
her mother around the clock in her last
days, but she nonetheless came to rely on
the kindness and expertise of the doulas.
“They would check in and hold a space
for us. It was remarkable — like a beauti-
ful ballet. We all remained mindful, and
the doulas were instrumental in allowing
us to talk about our raw feelings and what
was happening for us emotionally.
“As time unfolded, they educated us
about what to look for at the end and
what was happening with our mother
physically. The last day or two, the dou-
las came and sat with us. It made things
less scary. It was both horrifying and
beautiful at the same time,” she said.
The doulas can be a touchstone for
family members. “I remember schmooz-
ing with one of the doulas about our
personal lives,” Ms. Topfer said. “We
connected in a real way. I kept thinking
that my mom — who was very social
— would have loved to be part of that
conversation. I felt like I was feeding my
mom’s soul.”
Just the Start
Ms. Rakow noted that 10 years ago, an
internet search for “end-of-life doulas”
would have produced nothing, while
today one would get dozens of results.
“People are starting to talk about death.
I’ve seen this conversation taking place
across the country,” she said. “We get
dozens of calls every week from people
looking for a doula or for more informa-
tion about the field.”
To be a doula is a privilege, a calling,
and an honor for Ms. Rakow and her
colleagues. For people like Ms.Topfer, the
doulas are nothing short of heroes. “For
them to witness dying and death and hold
a space for us when we were at our most
extreme pain, sadness, fear, and depres-
sion is nothing short of miraculous,” she
said. “To think that they go into these
situations voluntarily over and over again
— they’re remarkable.”
Senior contributing writer Joanne Kaldy
is a freelance writer in Harrisburg, PA,
and a communications consultant for
the Society and other organizations.
FOR MORE INFORMATION
The International End of Life Doula Association provides training and certifica-
tion for end-of-life doulas. According to the organization’s website, “When a doula
adds the letters INELDA after their name, it shows the world they have met all the
requirements of our program. No previous medical or hospice-based experience is
required, only a willingness to learn and support others. Achieving this is a process
that requires considerable time and effort.” The organization certifies individuals
to serve as vigil doulas, who can help families and patients directly during a vigil,
as well as lead doulas, who can manage a case from start to its conclusion (which
may extend beyond the patient’s death).
If you would like to contact a doula in your area or learn more about end-of-
life doulas, contact INELDA at www.inelda.org/contact-us/.