By Erin Collins, BSN RN CHPN
We got the call
midweek from a woman who was looking for assistance in supporting her dear
friend who was living with chronic illness. She had been visiting this friend
for several weeks, listening and helping with small tasks around the house, and
going for walks when they felt up to it. Her friend, it seemed, was getting
worse now—she knew this dear woman needed more than she could give and had
heard about our end-of-life doula service.
I made an initial
visit to assess what was needed for this 52-year-old woman (HL) living with Familial Pulmonary
Fibrosis, Bronchial Adenocarcinoma, Emphysema and Interstitial Lung Disease (all
hereditary) as well as Rheumatoid Arthritis. She was on a trial with OFEV, but
the fibrosis was unresponsive to treatment. I learned that she lived with her 3rd
husband, her high-school sweetheart. He worked 60-hour weeks in construction-
leaving HL at home alone for 12 hours a day. She required high-flow oxygen and
due to wildfires in our area, was unable to leave the house. Newly acquired pneumonia
had her coughing almost incessantly and unable to sleep at night unless she sat
completely upright, even with her 4th course of levaquin. HL was
under the palliative care service of the local health system for pain management
and was also seeing her pulmonologist—both of these were telehealth visits due
to COVID-19. Although it was apparent to me with my hospice nursing background
that she would meet criteria, HL made it quite clear that she wasn’t ready to
die, didn’t want to talk about hospice and wasn’t ready to go there. Isolated,
lonely, and quite ill, what HL needed most was additional support and
companionship. An end-of-life doula was a perfect resource.
We began
visiting her home atop a long mesa overlooking a beautiful canyon in the high
desert, 45 minutes from the largest town, where our doulas all reside. We
agreed to weekly 2-3 hour visits, taking the appropriate precautions with
masking and distance in the house. We rotated weekly, so HL met each of the 5
doulas on our team, and each brought a unique specialty to the visit.
Regardless of the specialty, what we quickly learned was that what she needed
most was a listening ear. We had plans and ideas on how to help her get through
tasks she wanted to complete—sorting out photos, being creative again, labeling
family antiques for her sons. Each week, however, HL quickly began sharing
whatever she needed to share—retelling old traumas, venting about friendships,
describing her symptoms and frustrations with acquiring needed medications, and
entrusting us with the story of her estranged relationship with her oldest son.
We listened, and each time that we heard something that fell under the
provision of hospice, we gently reminded HL, “I know you aren’t ready, but when
you are—this is something hospice can provide.”
During
our third visit, HL told me that she was ready to consider hospice, “because
you all made it sound not so scary, not such a death sentence.” She wanted to
wait to finish one more Rituxan infusion for her RA, but then she would be
ready to enroll. Three weeks later, one week shy of that last infusion,
pneumonia had worsened in her lungs and her palliative care provider finally
made the recommendation that she enroll in hospice immediately. She called me
in a bit of a panic, and at the same time knowing she was ready for this step.
I offered reassurance and support and planned to be present for her admission
visit at home.
Throughout
our 6 weeks with HL, her husband was not on the same page. I met him for the
first time at her hospice admission visit, where he told me that if she were to
stop breathing, he would do “everything I could to save her life.” This arose
during a discussion of her advance directive, which I knew she had not yet
completed. However, from the relationship we had developed, I knew that she no
longer wanted to be resuscitated. I gently encouraged them to complete the form
to honor HL’s wishes. Her husband was not ready for this step.
HL was on
hospice care for 8 days. Seven of those days were in the inpatient unit, where
she was given around the clock care and a more appropriate level of symptom
management than she had at home. I had the great honor to be able to visit with
her in the inpatient unit, where she expressed her gratitude for our
relationship. HL knew that if we had not become involved in her care, she would
have ended up back in the ICU and would have died there. We were able to talk
about hospice in a way that didn’t mean death to her, even though the hospice
admission is exactly what allowed her to become comfortable and relaxed and to
die in a more peaceful manner. Her trust in our doulas evolved into her
husband’s trust of our doulas which in turn allowed him to trust hospice and to
trust the process of her natural death.
The most
profound experience for HL occurred during my visit to her at the hospice
house-- her estranged son called on the phone. HL was beside herself, knowing
that the out-of-state number was him. I offered to step out of the room, but
she insisted I stay and hold her hand throughout the conversation. After they
hung up, she felt as if a miracle of healing had just happened for her, and
that part of the miracle was having her doula in the room at the exact time of
the call. We had been there to hear the story every week for the 6 weeks prior
to her hospice admission. Although this healing could have happened with the
support of hospice, it wouldn’t have happened during her short length of stay.
HL was a
championship barrel racer and rodeo belt buckle designer. A week before her
death, her last buckle design arrived: for her husband. He wore it to the
hospice house and we let her know he wouldn’t take it off while he was there.
The night of her death, I dreamt of her racing around barrels in the clouds.
She certainly rounded barrels in her last year of life; it was our honor to
bridge the gap between the barrel race and hospice care.
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Erin Collins, BSN RN CHPN
is a NEDA-proficient End-of-Life Doula, member of the NHPCO End-of-life DoulaCouncil and the co-director of The Peaceful Presence Project in Bend, OR.