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.
Erin Collins, BSN RN CHPN is a NEDA-proficient End-of-Life Doula, member of the NHPCO End-of-life Doula Council and the co-director of The Peaceful Presence Project in Bend, OR.