Illness Doula: Adding a New Role to Healthcare Practice

Robinson, Annie; Spencer, Danielle; Lewis, Brad

doi:10.1007/s10912-017-9438-4

Cited by 7 publications

(9 citation statements)

References 11 publications

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“…• It highlights the lack of clarity and consistency in the role and a need for further work to be undertaken socioeconomic circumstances. Alternatively, within the literature there are also descriptions of Illness Doulas (Robinson, Spencer, & Lewis, 2017) and delirium doulas (Balas, Gale, & Kagan, 2004). These specialist roles demonstrate the possibilities in care that complements that of healthcare professionals.…”

Section: What This Paper Addsmentioning

confidence: 99%

“…With birth doulas now well established, we are seeing innovative hospital and community models in both the UK (Darwin, Green, McLeish, Willmot, & Spiby, ) and the US (Kozhimannil, Vogelsang, Hardeman, & Prasad, ) including doulas addressing inequity for women giving birth in lower socioeconomic circumstances. Alternatively, within the literature there are also descriptions of Illness Doulas (Robinson, Spencer, & Lewis, ) and delirium doulas (Balas, Gale, & Kagan, ). These specialist roles demonstrate the possibilities in care that complements that of healthcare professionals.…”

Section: Introductionmentioning

confidence: 99%

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What role do Death Doulas play in end‐of‐life care? A systematic review

Rawlings

Tieman

Miller-Lewis

et al. 2018

Health Soc Care Community

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Current health and social care systems do not always meet the needs of the dying in our communities. As a result, patients and families are choosing to place their trust in those who can advocate for them or fill the gaps in care. Birth Doulas have been working with women during pregnancy and after birth for many years, and we are now seeing a new role, that of a Death Doula emerging in the end‐of‐life care space. How Death Doulas work within health and social care systems is not understood and we conducted a systematic review to explore the published literature to explore the role and potential implications for models of care delivery. Following the PRISMA recommendations, we searched the literature in January 2018 via bibliographic databases and the grey literature without search date parameters to capture all published literature. We looked for articles that describe the role/work of a death doula or a death midwife in the context of end‐of‐life care, or death and dying. Our search retrieved 162 unique records of which five papers were included. We analysed the papers in relation to relationship to health service, funding source, number and demand for services, training, licensing and ongoing support, and tasks undertaken. Death Doulas are working with people at the end of life in varied roles that are still little understood, and can be described as similar to that of “an eldest daughter” or to a role that has similarities to specialist palliative care nurses. Death doulas may represent a new direction for personalised care directly controlled by the dying person, an adjunct to existing services, or an unregulated form of care provision without governing oversight.

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Section: What This Paper Addsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

What role do Death Doulas play in end‐of‐life care? A systematic review

Rawlings

Tieman

Miller-Lewis

et al. 2018

Health Soc Care Community

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“…A majority of deaths in the United States occur in institutional settings such as hospitals, hospice facilities, or nursing homes, but there is a growing preference of many terminally ill patients to die at home surrounded by their loved ones. Therefore, EOLDs play an increasingly important role in bridging the limitations of institutional care (Robinson et al, 2019) while helping patients and their families create an environment for honoring the dying person, and their plan for a meaningful death.…”

Section: Discussionmentioning

confidence: 99%

“…This structured system of care contributes to the patient’s and family member’s feelings of helplessness, confusion over the meaning of complex medical terminology, and an inability to effectively communicate their wishes and preferences to the medical team (Gilliland, 2002; Lentz, 2014). As non-medical intermediaries, EOLDs focus on interventions to alleviate physical and emotional distress, provide social support and companionship, and to advocate on behalf of dying patients and their family members (Corporon, 2011; Fukuzawa & Kondo, 2017; Robinson et al, 2019). EOLD care focuses on a holistic approach to death that encompasses the physical, emotional, social, and spiritual needs of the dying person to restore balance to the medicalization of end-of-life care (Fersko-Weiss, 2017; Rome et al, 2011).…”

mentioning

confidence: 99%

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

Page

Husain

2021

Omega (Westport)

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This is an exploratory study to document the demographic characteristics, backgrounds, and services provided by trained and certified INELDA end-of-life doulas. Like birth doulas, end-of-life doulas represent a divergent, yet complementary form of care for dying persons. The purpose of end-of-life care is to facilitate comfort of the dying person and their closest family members. Surveys were completed by 618 end-of-life doulas regarding their demographic characteristics, employment backgrounds, services, and their experiences providing end of life care to dying persons and their closest family members. Follow-up qualitative interviews were also conducted with a subset of 39 respondents who completed the original survey. Results show that trained doulas are largely white (91.4%), female (90.4%), hold a Bachelor’s (32.3%) or Masters (32.4%) degree, and are employed outside of their EOLD work (70.1%). Qualitative data details services provided to dying persons and family members in addition to the benefits and challenges of working with traditional healthcare settings.

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“…3 The success of birth doulas has led to the development of doulas in other specialised areas. [4][5][6] In death and dying, death doulas (also known as 'end-of-life doulas' or 'death midwife') are likely to offer similar benefits for terminally ill patients and their families by providing various forms of support in the pre-death phase, during the dying process, and post-death phase. 7,8 Death doulas have recently gained greater attention, particularly in the United States, United Kingdom, Canada and Australia.…”

Section: Introductionmentioning

confidence: 99%

Death doulas as supportive companions in end-of-life care: A scoping review

2022

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Background: Death doulas have gained greater attention recently by offering psychosocial, spiritual and other non-clinical support for patients with time-limiting diseases, including their families, with the potential to complement existing end-of-life care services. However, their roles, scope of practice and care impact remain poorly understood. Aim: To describe existing knowledge on death doulas regarding their roles, care impact, training and regulation. Design: This scoping review utilised Levac et al.’s framework and textual narrative synthesis to summarise the findings. Data sources: PubMed, Scopus, CINAHL, PsycINFO, ProQuest, Google Scholar were searched for relevant articles from inception to 20 May 2021. Empirical studies, narrative reports, unpublished theses and studies in English were included. Results: Thirteen articles were included. Death doulas take on diverse roles in end-of-life care. Their roles include providing psychosocial, spiritual, practical support, companionship and resource navigation. The positive impacts of engaging a death doula include continuous presence, holistic service and flexible payment regime. The negative aspects include role inconsistencies and confusion among healthcare professionals and the public. Conclusions: Death doulas can augment existing end-of-life care services by providing holistic and personalised care services at home or hospital settings. Their roles are still evolving and remain mostly unregulated, with little evidence about their impact. There is a need for more rigorous studies to explore healthcare professionals’ views about this role and examine the clinical outcomes among dying persons and their families.

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Illness Doula: Adding a New Role to Healthcare Practice

Cited by 7 publications

References 11 publications

What role do Death Doulas play in end‐of‐life care? A systematic review

What role do Death Doulas play in end‐of‐life care? A systematic review

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

Death doulas as supportive companions in end-of-life care: A scoping review

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