To explore changes in end of life care, our study adopts a multi-pronged approach. This mixed-methods approach will involve interviews, a survey, and a meta-narrative review of academic literature.
Hospice Workers and Death Doulas
Researchers in Canada, the US, UK, Norway, Australia, Argentina, and Brazil are currently carrying out two interview-based sub-projects. The first of these focuses on hospice workers and volunteers. We use this term broadly defined, recognizing the range of people who play a role in supporting patients and families through the dying process – from medical professionals to admin teams and cooks. Conversations ask people to reflect on the ways in which they support people facing death, what services people value, and what gaps they see in healthcare systems. Our second interview-based study involves speaking with death doulas (also known as soul doulas or death midwives in different contexts). This terms describes a growing group of professionals who operate adjacent to traditional healthcare to support people and their families in navigating death. Conversations explore how doulas provide support, as well as points of tension that exist: between themselves and patients; between patients and families; or between themselves and the healthcare system.
Bereaved Outlooks on Good Death
Our team has also developed a survey which aims to capture perspectives on what people consider to be a ‘good death.’ Targeted at people who have experienced the death of someone close to them in the last year, this survey asks questions such as what services the deceased accessed during the dying process, how they responded to this care, and what value these supports provided. This survey is currently being circulated among respondents in the US, UK, Australia, Argentina, Brazil, and Canada, and researchers are working to adapt this study for the Norwegian context.
Palliative Care Meta-Narrative Literature Review
The final study in this larger project is a large-scale literature review of academic research on palliative care. Looking at the largest and most influential journals on this topic, our work interrogates how end of life care is framed, and more specifically, how healthcare professionals understand the role of religion, nonreligion, and spirituality in administering care. Our study hopes to push back against presumptions that all people at the end of life want or need some kind of spiritual care. However, this work also requires being aware of the understandings that frontline workers bring with them in designing systems and administering care. This study we want to think more broadly about what a “good death” means, and what this looks like when working amongst the shifting demographics shaped by the rise of nonreligion. Researchers have assembled a collection of the 13 largest English-language journals in this area, and are currently exploring how this work may be expanded to other contexts.
