A Bridge to Dying Well: Understanding the Role of End-of-Life Doulas in Vermont with Implications for Policy Changes

Date
2024-12
Language
American English
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Ph.D.
Degree Year
2024
Department
Richard M. Fairbanks School of Public Health
Grantor
Indiana University
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Abstract

End-of-Life Doulas (EOLD) are an emerging profession attending to dying clients and their families. There are currently no national regulations, standards, or training mandates for EOLDs or policy solutions. Vermont has good EOLD training programs, a history of policy discussion on dying and an EOLD community organizing throughout the state, making it an excellent study site. There is a strong reluctance within the Vermont EOLD community to allow regulations for fear of creating barriers to entry to practice. EOLDs wish to contribute to any legislative processes impacting their work. Vermont EOLDs are implementing new models that rely on collective services to optimize care, provide an adequate income stream and respond to socio-geographic factors. Collectives allow for a community of practice to flourish, where EOLDs with experience can collaborate. Because current training models do not emphasize practical learning or address grief and loss in the community, collaboration is essential. Foundational training should be standardized so Vermont EOLDs have common skills and knowledge, while still bringing their unique backgrounds and talents to each client. There is little consensus on the need for regulation, and whether payment validates their skills or negates the sacred nature of their work. EOLD’s roles are much larger than the literature would suggest, with significant effort being devoted to death literacy as well as promoting agency in the dying. This research illustrates that these providers are making a significant contribution to the well- being of Vermonters and proposes nine policy recommendations to public health leaders and legislators. EOLDs need very little regulation to continue delivering essential services amidst a state-wide health care system that is seriously strained by its aging population and poverty, and they need a living wage. Or as one Vermont EOLD said “we look at this rich end of lifetime as a time of coming to terms, of healing places that still need to heal, of celebrating and affirming and rejoicing and validating the things that were rich and precious. And mourning the things that will be lost, and feeling all of the depths of that, just the whole package. It’s an amazing opportunity.”

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