Experiences of engaging a death doula: qualitative interviews with bereaved family members

Deb Rawlings; Kristine Van Dinther; Lauren Miller-Lewis; Jenifer Tieman; Kate Swetenham

doi:10.1177/26323524231207112

Experiences of engaging a death doula: qualitative interviews with bereaved family members

Palliat Care Soc Pract. 2023 Nov 8:17:26323524231207112. doi: 10.1177/26323524231207112. eCollection 2023.

Authors

Deb Rawlings¹, Kristine Van Dinther², Lauren Miller-Lewis^{3

4}, Jenifer Tieman³, Kate Swetenham^{3

5}

Affiliations

¹ Research Centre for Palliative Care, Death and Dying, College of Nursing and Health Sciences, Flinders University, GPO Box 2100, Adelaide, SA 5001, Australia.
² College of Nursing and Health Sciences, Flinders University, Adelaide, SA, Australia.
³ Research Centre for Palliative Care, Death and Dying, College of Nursing and Health Sciences, Flinders University, Adelaide, SA, Australia.
⁴ School of Health, Medical and Applied Sciences, CQUniversity Australia, Wayville, SA, Australia.
⁵ Health Programs and Funding Branch, Department for Health and Wellbeing, Adelaide, SA, Australia.

Abstract

Background: There has been an emerging trend of adopting a death doula, a non-medical advocate and guide for people at the end of life and their families. While there has been growing empirical research regarding the work of death doulas, no studies have been undertaken with the families who have engaged them.

Objectives: To understand the experiences of families who used a death doula in terms of what they did for the patient and family; to understand the benefits and drawbacks of using a death doula; and to use family insight to determine cultural shifts towards death and dying, and what the death doula phenomenon tells us around our attitudes towards death and dying.

Methods: We recruited and interviewed 10 bereaved family members to learn about their experiences using a death doula. This qualitative research took an interpretive phenomenological approach, and thematic analysis was used to analyse the data.

Results: The most valuable attribute the families gained from death doulas was an increase in death literacy resulting in personal empowerment. Empowerment enabled positive end-of-life experiences for the family and personalised deaths for the patient. A novel finding was that the connections and knowledge shared between the death doula and family had a resonant effect, resulting in families being more comfortable with death and keen to share their knowledge with others. Therefore, family engagement of a death doula led to an increase in community awareness around death and dying.

Conclusion: Family members' experience with a death doula was overwhelmingly positive, empowering them practically and emotionally to deliver the best end-of-life care. Empathy and sharing of knowledge by death doulas were valued by families and resulted in an increase in death literacy which provided families with opportunities to 'pay it forward'. Furthermore, the relationships formed between doulas and families have the potential for a lasting, resonant effect.

Keywords: bereavement; death doula; end of life; palliative care.

Plain language summary

What are bereaved family members experience of using a death doula? To date, there are no research studies with a focus on family experiences using death doulas for end-of-life care. We interviewed 10 family members from Australia and the United States to understand what benefits death doulas provided, what complicating factors might be involved when engaging them and what value and impact they had on end-of-life care for families. The most valuable attribute the families’ gained from death doulas was an increase in death literacy. There was a direct connection between this and a sense of empowerment for patients and families. Empowerment enabled positive end of life experiences for the family and personalised deaths for the patient.