Anamcara, Dame Cecily Saunders and the End of Life Doula.
During the past several years of my hospice physician journey, I have had my eyes opened about the role of end-of-life doulas (EOLDs) in end of life care.
It began by meeting and working with an EOLD in the Cleveland area as we attempted to bring a "Re-Imagine the End of Life " event to Northeast Ohio. Although unsuccessful, this interaction opened the door to my clearer understanding of the role and importance of an EOLD in the compassionate care of the dying. For much of my career as a hospice physician prior to this, "doulas" were dismissed by the hospice community as being unnecessary and, sadly, at times disparaged.
Realizing the gifts of human presence and the skills around legacy work and ritual that the EOLD offers to a dying person and their family/friends was like a breath of fresh air. I was so moved by what I learned that I offered to co-teach a class about dying with this EOLD to 4th year medical students. This group of young physicians were likewise moved as we helped them explore their own mortality and used that process to begin to understand their future role as physicians in offering healing when curing was not possible, and to accept that their perfectly imperfect unique selves were often the medicine that a dying person needed to have a dignified and comfortable death. Physician and EOLD as partners in teaching young physicians about dying and about themselves...imagine that.
Fast forward to a few months ago. As I stepped away from clinical work and re-directed my energy to teaching, I was intrigued with the possibilities of widespread collaboration between hospice/palliative care and the EOLD community. How could I use my role as an educator to somehow foster and nourish this relationship? It seems very clear to me that the current "medical model" of end of life care is in a state of flux, and the hospice/palliative care community is floundering. There are not enough staff to provide the care that is needed, and each hospice team member does not have enough time to provide the human presence that is needed for the dying person and their family. It is also very clear to me that the EOLD community is uniquely prepared and willing to fill those roles. Yes, there are barriers to address, but there are also so many opportunities to bring this to fruition if we can simply bring both communities to the table and re-imagine how end-of-life care can become more comprehensive and responsive to the needs of the dying.
Ars Morendi
Dame Cecily Saunders, the founder of the modern hospice movement in the 1960s, understood that caring for the dying was not just a medical intervention. She developed the model of "total pain" which highlighted the many aspects of pain and suffering beyond the physical. These include the spiritual, emotional and social domains. She also recognized that caring for a dying person included caring for their family and circle of caregivers, as the suffering of a dying person was often transmitted to those around them. Hospice care, delivered by a team of compassionate individuals, brought the possibility of transforming that suffering into healing for all. To create this new way of caring for those at the end of life, Dame Cecily "remembered" how care was delivered in the Middle Ages. Returning to the non-medicalized care of that time, she re-imagined the "Ars Moriendi" (the art of dying) that was the guide to caring for the dying throughout Europe and brought that spiritually focused care forward. She also was likely influenced by the ancient Celtic model of the "Anamcara" (soul friend). The Anamcara, in Celtic culture, became a midwife for the dying based upon deep personal connection and presence.
It is that deep personal connection and human presence at the bedside of the dying that has been so important through the ages as we walk each other home. The Anamcara exemplified that privilege. Dame Cecily brought it back to us, as we got lost in the limitations of a medicalized death. We are getting lost again, and it seems to me that the modern EOLD community is the embodiment of the cultural, social, and spiritual aspects of care that we need at the bedside of the dying...that I will need at the bedside when I am dying.
Let’s Reimagine End of Life Care
Every tsunami starts with a focal seismic disruption. I am currently engaged in an extensive exploration of the EOLD community, as well as talking with stakeholders from the hospice/palliative care community. The goal is a medical conference in 2027 to provide the table needed for all to learn and share and create. I hope that conference produces a tsunami of re-imagined end of life care. In the meantime, I will be highlighting EOLDs that I meet in a special section on my website. It is an amazing and eclectic group of people who are dedicated to making our deaths, and our lives, better.
