My First Private Doula Case: Bringing Order to Death
Like first love, the first client has a special place in our heart. Each opens us up in ways we never anticipated or imagined. Each teaches us new things about ourselves. My first client helped me learn how profound doula work can be, even when we don’t have a long time to work with them.
Sarah, the daughter of the woman who became my first client, contacted me by email in late September, 2015. This happened shortly after I posted my first blog on social media. A friend of Sarah’s saw the blog and suggested she contact me. Sarah’s mother, Ann, had recently been diagnosed with cancer that, by the time it was found, was so systemic they weren’t even sure of the primary source. In her first four weeks of treatment, Ann subjected her seventy-year-old body to full “kitchen sink” chemo.
Sarah was reaching out to me because, although her parents were still hopeful for a life expectancy of two to five years more, she believed that the progression of the disease would take her mom much sooner. She also knew that her parents were not prepared to face that harsh reality. None of the treatments had done anything to change the trajectory of the illness. Sarah wanted to bring me in to get to know her mom before her cognitive abilities were limited from the disease process.
I met Sarah at Starbucks and we talked for well over an hour. I spoke about what a doula can offer, how I believe our medical system tends to take the humanity out of the journey at the end of life, and my goals of supporting their emotional, spiritual and psychological needs. Sarah shared with me her family makeup, who her mom was (pre- and post-diagnosis) and how much she wanted to support her mom to the best of her ability. The biggest obstacle was that she knew her parents weren’t ready to meet someone called an “end of life doula,” and certainly not someone called a “death doula!”
A week after our meeting at Starbucks, Sarah introduced me to Ann and John (her Dad) as “a good friend who helps people and their family navigate this path they found themselves on”. Not the most concise description of what I can offer, but I’ll take that every time. Our first meeting went better than I could have planned. I spoke about how I’d witnessed so many patients being treated by dispassionate, detached medical professionals who only wanted to know when the port-a-cath would be placed, and the dates of the next radiation and chemo appointments, Ann nodded her head and smiled, as if to say: “Yes, someone finally understands.” Following our conversation, I asked to come back in a few days. I met with them twice before Ann started to decline rapidly. Although our relationship was brief, I came to learn that Ann’s lifelong passions were music, gardening, and children.
Ann’s decline led to intractable pain, which alarmed her and John. John and I started having phone conversations about Ann, and I became the sounding board for all the options given to them. One option was to transport Ann forty-five minutes to the hospital and make her endure a PET scan—the oncologist offered to look for more tumors that he might treat to lessen the pain and possibly give her more time. John was horrified at what that would put Ann through, but he wasn’t ready for the “H” word: “hospice.”
John and I talked about goals. Now that Ann, was becoming less and less lucid, due to the side effects of the medications and the disease process, what did he think was as an acceptable quality of life for her, and what did he hope for in regard to her prognosis. Two days later, John admitted Ann into hospice care.
When I arrived for my next visit, John threw open the door and proudly said: “My death doula!” Sarah had finally explained my title and he was now ready to embrace it. In that visit, John expressed his frustration and confusion. He said that the oncologist had one set of thoughts and hospice was encouraging a completely opposite point of view. He asked, “Who can see the whole picture!?” Ann immediately answered him: “Shelby can”.
Over the next few days Ann continued to worsen. I visited daily and taught the family how to labor death. I encouraged them to play her favorite concertos and educated them on how they could get in bed with her or massage her. I normalized the dying process. The family and I did meaningful legacy work. We reviewed her amazing life of love, stewardship, and teaching.
On her final day, remembering her love of the garden that was just outside her window, I suggested we open the window to let her hear nature, feel the breeze, and smell her garden. That evening John and Sarah left Ann alone long enough to visit with their pastor in the kitchen. At one point, John stopped mid-sentence to remark that a strong floral fragrance had suddenly permeated the room. They checked on Ann and she had died. When I later spoke to John, he said: “She left with her wild flowers.”
At Ann’s funeral John spoke about end of life doulas. He likened the early experience of caring for Ann to a jet going 500mph, cracking apart, and destined to crash, as he frantically remained outside trying to fix and patch whatever he could to avoid the disaster. He said it was “his” end of life doula who encouraged him to get in the plane, sit next to Ann, and enjoy whatever time they had left. He thanked me for reminding him to focus on Ann as a person and his love for her, instead of only perseverating on her day-to-day physical needs. Due to our discussions, he also learned to talk openly to Ann and Sarah and not be afraid of anyone’s emotional reactions.
Weeks after Ann’s death, Sarah, John and I met. He conveyed how much joy he found in knowing that Ann had exactly the kind of death she wanted. He also said that he didn’t know if he could have said that, had I not been a part of her dying process.
I wanted to tell this story, not to put a spotlight on what I did for this family, but rather to show how much of a difference doula work can make to the dying. We—all of us who serve as doulas—help bring order to death, even when the time is short. One family at a time, we are slowly changing the cultural landscape of how people experience death. We are demonstrating how death, a necessary part of life, doesn’t have to be only about pain and suffering. It can also be a warm, nurturing experience.
Somewhere in the past, we lost the notion that we could successfully care for our own loved ones. We started to accept as truth that we weren’t equipped to support them in dealing with symptoms and facing the emotional ups and downs along the way. I believe, that end of life doulas are reversing this thinking. They are teaching families once again, that death, although heartbreakingly sad, can be one of the most meaningful experiences they share together. I couldn’t be prouder to be a part of this movement.