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Dying a 'Good' Death: The Work, Care, and Support of End-of-Life Doulas.

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End-of-Life Doulas: Documenting Their Backgrounds and Services.

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Demystifying Death: Reflections on End-of-Life Doula Work.

Amy Dellinger Page¹, Jonelle H Husain², Jack H Glascock¹

¹Department of Sociology, Appalachian State University, Boone, NC, USA.

|November 28, 2024

Summary

End-of-life doulas (EOLDs) provide crucial support to dying individuals and their families. This study explores EOLDs

Keywords:

compassion and care death work dying process end-of-life doulas self-care

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Area of Science:

End-of-life care
Sociology of health
Thanatology

Background:

End-of-life doulas (EOLDs) are emerging as key practitioners in end-of-life care.
Existing research has focused on EOLDs' backgrounds and services, but personal reflections remain under-explored.
This study addresses the gap in understanding EOLDs' lived experiences and perspectives.

Purpose of the Study:

To explore the personal reflections of end-of-life doulas on their work.
To identify the rewards, challenges, and motivations associated with being an EOLD.
To gain insights into how EOLDs navigate the complexities of supporting dying individuals and their families.

Main Methods:

Qualitative study involving interviews with 39 registered end-of-life doulas.
Participants were affiliated with the International End-of-Life Doula Association (INELDA).
Interviews focused on EOLDs' personal experiences, including rewards, challenges, surprises, and motivations.

Main Results:

EOLDs find significant rewards in their work, often stemming from providing compassionate support.
Key challenges include emotional labor, navigating complex family dynamics, and systemic barriers in healthcare.
Surprises often relate to the profound human connections formed and the resilience witnessed during the dying process.

Conclusions:

EOLDs' personal reflections offer valuable insights into the evolving landscape of end-of-life care.
The experiences of EOLDs highlight the importance of advocacy and respecting client wishes.
Continued research is needed to fully understand the impact and sustainability of the EOLD profession.