Caring For The Dying
Written by executive director of INELDA, Henry Fersko-Weiss
It explores how the dying and their families can bring deep meaning and great comfort to the care given at the end of a life. Created by Henry Fersko-Weiss, the end-of-life doula model is adapted from the work of birth doulas and helps the dying to find meaning in their life, express that meaning in powerful and beautiful legacies, and plan for the final days.
Birth doulas have been supporting women through childbirth since the 1980s. In 2003, Henry Fersko-Weiss, co-founder of INELDA, adapted the philosophy, tools, and approaches used by birth doulas to create a program with a new kind of doula, an end-of-life doula, to support and guide people through the dying process. This new approach brings deeper meaning and greater comfort to dying people and their loved ones.
That first program created was highly successful and became the model for two additional hospice programs Fersko-Weiss built in New Jersey. Through these programs, hundreds of people have had the benefit of end-of-life doula services in the final days of life. In addition, the INELDA end-of-life doula principles and techniques have been presented in public trainings at the Open Center in New York City and the Institute for Traditional Medicine in Toronto, Canada.
INELDA, an international nonprofit organization, is the next step in the evolution of the end-of-life care approach. INELDA is dedicated to helping hospices build end-of-life doula programs. It is committed to setting the standard for end-of-life doulas and supporting them in their professional life. INELDA will also continue to research and develop new tools and techniques to further advance best practices in end-of-life care.
Western society has lost its way in being with the dying. Pre-industrial and tribal societies experienced death and dying in multi-generational households within tight-knit communities guided by an elder or a spiritual leader. Rituals and beliefs around dying were handed down through the generations and brought a sense of the sacred to death.
Starting in the 1920s, hospitals removed dying from the heart of the family and ancient tradition. Death was now purely a medical matter overseen by beeping machines. The ideas and practices that had guided people in the last days came to feel out of place in this sterile environment. It is still this way today for more than fifty percent of people as they die.
In the 1970s, hospice started to change this by bringing death back into the home. Yet, all too often, even patients supported by hospice are not offered complementary care techniques or encouraged to explore meaning at the end of life. They are not helped to plan for how they want their environment or how they want to interact with loved ones and care givers in the final days.
Our vision at INELDA is to reestablish the role of guide in the dying process by promoting the use of end-of-life doulas and training them to serve in the spirit of the elder. Further, INELDA will work to help terminal patients, their families, and society recover the sacred nature of dying by reintroducing ritual in a personalized way.
To carry out its vision, INELDA will assist hospices to create end-of-life doula programs based on its three-phase model. That model encompasses summing up and planning work with a patient and family; continuous, around the clock vigil work; and reprocessing the loss with loved ones soon after the patient’s death.
It is a model that honors the life of the person dying, offers them control over how they approach their death, and thoroughly supports loved ones. By doing so it transforms the dying process into a richer, more spiritual experience.