# Exploring and understanding different perspectives on the experience of engaging with death doulas and those in activity-aligned roles toward the end of life: An integrative review

## TL;DR

This review explores how death doulas and similar roles affect end-of-life experiences from multiple perspectives, highlighting both benefits and challenges.

## Contribution

The study is the first to synthesize experiences of death doulas and aligned roles from diverse perspectives, including families, healthcare workers, and the dying.

## Key findings

- Death doulas help reduce fear and improve emotional experiences through knowledge and companionship.
- Role flexibility supports positive outcomes but can also lead to confusion and boundary issues.
- There is a need for regulation to protect both death doulas and those they care for.

## Abstract

The death doula movement is expanding due to dissatisfaction with the medicalization of death and dying. Existing reviews focus on exploring and defining the death doula’s role in providing care. However, the experiences of death doulas or those performing aligned activities for the dying person, families, and healthcare professionals have not been synthesized.

To explore the experiences of engaging with death doulas and those performing aligned activities from multiple perspectives (including the dying person, their families, health and social care professionals, and death doulas or those in activity-aligned roles themselves).

A systematically constructed integrative review.

Medline, CINAHL, Scopus, and Lens.org (searched September 2024) for concepts related to death doula and palliative care. Inclusion criteria: discussion of death doula or aligned activities; dying persons, families, doulas, or healthcare workers’ experiences with death doulas; any study type; any year; in English. Exclusion criteria: birthing, labor, or maternal doulas/midwives. Non-human death, life-limiting illnesses in people who are not in the end-of-life phase, or healthcare professionals or social workers, reviews, protocols, and abstracts. Papers were coded iteratively and synthesized into final themes. Quality appraisal was done using Mixed Method Appraisal Tool scoring.

Papers (n = 33) from six countries. Careful analysis and synthesis resulted in the creation of six themes: emotions before and after the engagement, transforming fear through knowledge and literacy, objective companionship, the death doula as a mediator, the death doula “cycle,” and the tension between flexibility and regulation.

The limited evidence from literature, including experiential perspectives outside of reports from death doulas or those in aligned-activities roles, indicates that research should continue to explore the benefits of adding these roles to end-of-life care. Positive experiences of engaging a doula or with those performing aligned activities appear related to role flexibility, which seems to facilitate other favorable experiences. However, flexibility also seems to be a cause of role confusion and boundary issues, shedding light on the need to develop regulation that protects both death doulas or those performing similar activities and those they engage with.

Https://osf.io/jkmsd.

Different perspectives on engaging with a death doula or someone who acts similarly to a death doula at the end of life

This systematic review explores the literature about different perspectives experiences when engaging with someone fulfilling the role of a death doula. Death doulas are non-medical but are concerned with the overall wellbeing of those who are dying. They have been gaining popularity as more people are unhappy with the medical care of those who are dying. In total, the researchers found 33 articles from 6 different countries that explored the experiences of dying people, family/caregivers, healthcare workers, and those in the death doula role themselves. This literature review found that death doulas can make sure that all parties have a generally more positive experience as someone nears the end of life. Simultaneously, death doulas are less likely to experience the negatives associated with traditional end-of-life care due to their flexibility, their unique way of creating relationships, and their ability to educate themselves and others on dying. However, there are some concerns about whether this role should be regulated for the safety of death doulas and those they care for. This research adds to the growing body of literature about death doulas by clarifying the experience of engaging with a death doula from multiple different perspectives, shedding light on the advantages of adding them to the care network when someone is dying.