The Role of a Doula in the End-of-Life Stage
Updated: Mar 3, 2022
By Erica Miele Searles, Trained End of Life Doula
Offering non-medical, holistic support
to the dying and their families.
An end of life doula (EOLD) serves the dying and their family during the last stage of life, during active dying, and after death. EOLDs offer non-medical, holistic support and comfort to those in end of life and their families. This support may include end of life education and guidance as well as emotional, spiritual, and practical care.
I began my journey with end of life work in 1998 with a seed planted at the birth of my fourth child. The stillbirth of my son, Max, left me with a sense of hollowness in my being. His untimely death, rushed birth and burial, and my experience during this time with the medical profession left me saying to myself “This didn’t go so well. Death is a part of life, but it shouldn’t be like this.”
Many years later, in 2016, I became seriously ill with sudden onset heart failure (called Takotsubo Cardiomyopathy or “Broken Heart Syndrome”) and was subsequently diagnosed with a rare and dangerous tumor called Pheochromocytoma. One of the more disconcerting symptoms of Pheo is a sense of impending doom. I had been unwell for many years, and these feelings of impending doom and paranoia had been going on for two years before my body finally succumbed, in the way of heart failure, to the catecholamines surging through it.
At the time, on bed rest, I managed these emotions by pouring myself into planning my own end of life. During this time, my interest in improving the quality of this end-of-life stage of life sprouted from that seed planted so many years prior. I survived my tumor resection, and I began my lengthy recovery
During this time as I processed the planning I had done to prepare for my own passing and I came to terms with what it means to be a rare disease patient, the sprouted seed emerged. Two years after my medical mysteries and surgery, I watched as a dear friend passed away from cancer. Her family invited me to see her in the hospital a few days before her passing. My time with her that evening quickly grew my interest in the dying process from a sprout into a strong seedling, ready to be transplanted into fertile soil. Knowing that my desire to be a greater part of this process must have a name, and having some training and experience with birth doulaing, I searched online for “death doula”. Sure enough, it was a thing, and it was called by many names, among them: death doula, soul midwife, and end of life doula. I registered for training with a beautiful and reputable company (INELDA), drove to Raleigh, NC for my training, and I am now in the process of becoming certified as an end of life doula.
End of life doulas fill a gap in healthcare and provide the much-needed one-on-one time to care for some of the emotional, spiritual, and practical needs of those in the end of life process. I believe that the end of life process is a significant part of a person’s life. I believe this stage of life should not be overlooked, but should indeed be considered a stage, not a waiting period. End of life should be honored, and should be time used well. As an End of Life Doula, I believe it is the right of everyone to die well. My personal mission as an EOLD is to serve as a non-anxious presence during the end of life process. I strive to bring fullness of days, dignity, and a peace filled passing to the dying and, to the greatest extent possible, comfort to the family through education about the end of life process.
Some ways in which a doula can serve a client in the months to days prior to passing are by engaging in conversation to explore the client’s life meaning, working on a legacy project for the client to leave for loved ones, helping to plan the client’s vigil, helping the client and the family to plan services, using guided imagery and physical touch with the client to help ease discomfort, helping the client and family understand the nature of the dying process and sitting vigil with the client and family in the client’s final days. An end of life doula will also connect with the family to do grief processing work after some time has passed.
The author and neurologist, Oliver Sacks wrote in his final book, Gratitude, of “completing a life.” Mr. Sacks was dying when he wrote: “...for it is the fate- the genetic and neural fate- of every human being to be a unique individual, to find his own path, to live his own life, to die his own death.” and “I have been able to see my life as from a great altitude, as a sort of landscape, and with a deepening sense of connection of all its parts. I feel a sudden clear focus and perspective. There is no time for anything inessential.” As an end of life doula it is my hope that all people in the end stage of their living will be able to find clarity, peace, and connection… that people in their end stage of living will indeed continue living.
If you or a loved one is interested in end of life doula services, please contact IM of CNY at 315-741-5774 so that we may put you in touch with Erica.