7.8 Death Doulas

Death Doulas: Compassionate Companions at the End of Life

Death doulas, also known as end-of-life doulas, provide non-medical, holistic support to individuals nearing the end of life and their families. While hospice and palliative care address medical and symptom management, death doulas focus on the emotional, spiritual, and practical aspects of dying. Their role is rooted in the belief that death is a natural part of life, and with the right support, it can be experienced with dignity, autonomy, and peace.

Roles and Responsibilities

Death doulas engage in various supportive activities, often serving as a bridge between medical teams and families. According to the International End of Life Doula Association (INELDA), their responsibilities include:

• Emotional and Spiritual Support: Death doulas facilitate life reviews, assist with legacy projects, and provide spiritual comfort to help individuals find meaning and closure. This aligns with Erikson’s Psychosocial Development Theory, particularly the final stage of integrity vs. despair, where individuals reflect on their lives to achieve a sense of completeness and acceptance (Erikson, 1982).
• Advocacy and Autonomy: They ensure that the individual’s end-of-life wishes are understood and respected, promoting autonomy and self-determination. This approach resonates with Self-Determination Theory (SDT), which emphasizes the importance of autonomy, competence, and relatedness for psychological well-being (Deci & Ryan, 2000).
• Family Support: Death doulas provide crucial guidance to families, helping them navigate anticipatory grief and the early stages of bereavement. They offer resources, a compassionate presence, and emotional support to ease the grieving process. Their work aligns with the Dual Process Model of Coping with Bereavement, which highlights the need to balance loss-oriented and restoration-oriented activities during grief (Stroebe & Schut, 1999).
• Education and Normalization: By providing information about the dying process, death doulas demystify death, reduce fear, and foster open conversations about end-of-life issues. This educational role helps individuals and families approach death with greater understanding and less existential anxiety, aligning with Terror Management Theory (Greenberg et al., 1986).
• Practical Support: Death doulas assist with end-of-life planning, vigil preparation, and after-death arrangements. They provide logistical guidance and help coordinate care needs, ensuring the dying person’s wishes are honored.

Scope of Practice

INELDA outlines a clear scope of practice for death doulas, emphasizing their role as non-medical professionals who work alongside hospice and medical teams. Death doulas support the emotional, spiritual, and practical needs of the dying person and their families. They provide information to help individuals make informed choices about their care and offer continuous support throughout the end-of-life journey (INELDA, n.d.-a).

Training and Certification

INELDA and other organizations offer comprehensive training programs for those interested in becoming death doulas. These programs cover topics such as:

• The end-of-life doula model of care
• Deep active listening
• Legacy and meaning work
• Vigil planning
• Signs and symptoms of dying
• Rituals and ceremonies
• Grief reprocessing and early grief work
• Self-care for doulas

These certifications equip doulas with the skills needed to provide compassionate, effective support to individuals and families (INELDA, n.d.-b).

Psychological Theories Underpinning Death Doula Work

The work of death doulas is deeply connected to psychological theories that guide the support they provide:

1. Erikson’s Psychosocial Development Theory: By guiding patients through life reviews and legacy projects, death doulas help individuals achieve integrity and avoid despair, fostering a sense of closure and dignity.
2. Self-Determination Theory (SDT): Death doulas promote autonomy and respect for personal choices, enabling individuals to feel in control during their final days.
3. Dual Process Model of Coping with Bereavement: For families, death doulas support both loss-oriented (emotional) and restoration-oriented (practical) tasks, helping them cope with grief in a balanced way.
4. Terror Management Theory (TMT): By normalizing death and reducing existential fear, death doulas provide a structured and compassionate environment that eases anxiety for both patients and families.

Impact on End-of-Life Care

Death doulas play a crucial role in enhancing the quality of end-of-life care. Their presence ensures that individuals and families feel supported, heard, and respected during one of life’s most challenging transitions. By addressing the emotional, spiritual, and practical aspects of dying, death doulas help create a “good death” experience, defined by dignity, autonomy, and deep support. As the end-of-life care landscape evolves, death doulas are becoming integral to a holistic approach, complementing the medical focus of hospice and palliative care with compassionate, personalized care.

• International End of Life Doula Association (INELDA). (n.d.-a). Scope of practice for the end-of-life doula. Retrieved from https://inelda.org
• International End of Life Doula Association (INELDA). (n.d.-b). End-of-life doula training. Retrieved from https://inelda.org