My first experience with an end-of-life doula was somewhat unexpected. I recall that some within our organization had been skeptical of doulas, questioning the term or preferring “vigil volunteer.” I remember some asking why doulas were needed, specifically, when any of us can provide comforting care and supportive listening to our patients. What I can say now, after my first experience with a doula, is how powerful, helpful and meaningful the doula was in everything we did.
Mary Jo had just joined our local hospice organization as a doula and she was a sweet and insightful older lady with long, nimble fingers and a warm, gentle smile. She had a wisdom and strength in her softness, and I could tell she was always pondering, always careful with her words and deeds. She had already been a hospice volunteer for five years prior to joining us and she jumped right in with her first case, which happened to be one that was also new to me. Everything about Mary Jo’s presence and involvement was helpful.
As a hospice social worker, I often find myself wearing multiple hats: sometimes I help with community resources or advance directives; sometimes I assess safety and ethical issues; but most often I provide a listening ear, a helping hand and an open heart. Although there is something unique about the social worker role, there is always overlap. Sometimes the chaplain or nurse provides social support, and sometimes I help with a prayer or listening to talk about medications. What stands out to me the most, though, is the importance of teamwork, and recognizing that the patient and the family are our focus. As long as we are staying within the ethical boundaries of our professions, as long as we are being diligent and acting with integrity, the team is available as a set of resources available to the patient and family. They can pick and choose and hopefully one of us is present in the right place and at the right time and it just works out as it is meant to. We all have a role, and we all contribute. I would say this is true for our volunteers and volunteer doulas as well. Though sometimes misunderstood, the doulas provide wonderful comfort and extra care for our patients.
The hospice social worker role is not without its limitations. Many times, I serve 30-65 patients at one time, sometimes in a rapid turnover from admission to death. Our agency increased expectations and our desire is to visit patients and families in the last 7 days of the patient’s life. On top of the everyday obligations of the social worker, I also serve 5 counties from my local office. Needless to say, I can’t be at all places when I want and there is a lot of triaging and reshuffling. Though I am passionate about my work and do all that I can to prioritize all patients’ needs, it is difficult to have the level of depth I would prefer to have with each family- particularly those who are only with us a short time. This is where I found Mary Jo to be so helpful.
Mary Jo hit it right off with Pat, one of our patients who played piano and sewed, just like Mary Jo. Pat had also been a ballroom dancer. She was still tall and thin and had elements of grace, and I could just imagine her nearly floating across the dance floor. Mary Jo met with Pat, her family, and myself and we worked together to assess the most meaningful songs in Pat’s life, to put together a Music & Memory compilation for her. In other sessions where I was not present, Mary Jo assisted with helping them create a memory album- a scrapbook of Pat’s memories and most cherished moments. She also helped Pat with writing out her funeral plan and planning for her death, including what music she wanted playing while she was dying, how she wanted the room, how she would prefer visitors. Mary Jo created a safe, comfortable and gentle space for these discussions, making them almost as though they were planning for any other life event. Mary Jo helped Pat see death as just as important, or maybe even more important than other events, as she shared her final wishes and wrote her final good-bye letters. Pat was able to remain in the comfort of her home surrounded by family. Throughout the whole process, Mary Jo kept our team informed. I still visited weekly and we had nice sessions of building rapport, with Pat sharing life stories and Mary Jo making tea for us. It was always a delight to laugh and talk together.
As Pat continued to decline, Mary Jo helped me with preparing the family. We worked together to provide consistent messaging. Mary Jo kept us in the loop about concerns or needs she was noticing, and she was also open with Pat and the family as well. Pat had shared that her late husband always enjoyed poetry and especially loved Walt Whitman. She quoted “The powerful play goes on and you may contribute a verse” and talked about how she wanted to make sure she had lived a beautiful dance, a beautiful song. I feel we were able to help her with this, even in composing her last dance–her final preparation for death. Mary Jo was a perfect fit and personality to help with this, and Pat was able to pass away peacefully, surrounded by family, with her favorite Waltz playing while her granddaughter read poetry to her. It is my firm belief that Mary Jo, as the end-of-life doula on our team, was key in making all of this happen. I was honored to partake and witness these treasured moments. I think of my own verse, what I would like to contribute, and I can only hope to have as much love and meaning and care in my final hours as these. “The powerful play goes on and you may contribute a verse.” What will your verse be?
Jessica Curd, LCSW is a Certified Hospice and Palliative Care Social Worker (APHSW-C), at Our Hospice in Indiana. She is a visiting professor at Indiana University and is pursuing a PhD in Social Work there as well. She is an active member of the NHPCO End of Life Doula Advisory Council and is passionate about supporting and advancing the role of end-of-life doulas in Hospice and Palliative Care. Jessica lives with her family of 4 in Greensburg, Indiana.