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

Background

‘Doula’, which is a Greek word for ‘woman’s servant’, traditionally refers to ‘birth doulas’ or ‘postpartum doulas’ who are trained to provide companionship, continuous labour support and postpartum care. ¹ They offer emotional, physical and non-medical care during labour, ² and facilitate communication between the mother and medical staff. ³ The success of birth doulas has led to the development of doulas in other specialised areas.^4–6 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. This role could be ascribed to shifting family structures and societal values, changing attitudes towards modern dying,^7,9 the promotion of compassionate communities movement, ¹⁰ and the need to address gaps in end-of-life care.^11–16 Death doulas perform a wide range of supportive roles to improve the quality of life for terminally ill patients and their caregivers, including informative, emotional, spiritual and practical support, as well as companionship. For example, some death doulas provide information about the different end-of-life options based on the dying person’s preferences, from fulfilling last wishes, funeral planning to even legal paperwork.^7,8 They also help families navigate healthcare and community resources.^7,8

The notion of a ‘good death’ encompasses elements such as having a preferred place to spend the last few moments with loved ones, maintaining a pain-free process and fulfilling one’s final wishes or dying preferences. ¹⁷ Death doulas can potentially bridge the gap in end-of-life care by ensuring a care continuum between the hospital settings and preferred place for death. Although contemporary palliative and end-of-life care services have made significant progress in improving the dying experiences and outcomes, they might not be able to cater to all the dying’s needs due to limitations, such as service availability, and healthcare professionals’ scope of practice.^9,18–20 Moreover, caring for the dying at home can be a challenging, complex and non-homogenous task across different individuals with no ‘standardised care bundle’. As a result, many family members or caregivers face many uncertainties, including their availability to provide round-the-clock care and handling home care’s physical and psychological demands. ²¹ This situation can place a heavy burden on the caregivers, causing them to seek psychosocial counselling, peer support, respite care, financial support, assistance in daily chores and funeral arrangements.^22,23 However, palliative home care services have often struggled to fulfil these needs because of rising demands for home death and limited resources. ²⁴ The gap in home-based end-of-life care has led to a growing interest in death doula services, which can complement existing palliative services by addressing the educational, social, emotional and spiritual needs of the dying and their families.

Literature gaps

Death doula has been touted as ‘the missing piece of the hospice mission’ and a valuable supplement to existing end-of-life care. ²⁵ Although there has been increasing media attention on this emerging care model since its first coinage in 2000, ²⁵ the public and other professionals are still unclear about what it entails due to role variations among different countries and contexts. ⁷ There is also insufficient formal academic literature to support its effects and implications. ¹⁰ The only systematic review on death doulas found only four narrative articles and one doctoral thesis, ¹⁰ making it difficult to determine the scope of death doula practice, nature of work and its impacts. The lack of understanding about death doula might also hinder its integration into existing palliative and end-of-life care services and acceptance among the public and healthcare professionals. Hence, a scoping review was conducted to map emerging literature on death doulas to understand their roles, training and care impact.

Stage 1: Identifying the research questions

The research questions for this scoping review were derived from a preliminary literature review and authors’ discussions as follows:

Stage 2: Identifying relevant studies

Four databases were searched systematically (Pubmed, Scopus, CINAHL and PsycINFO) for articles published from inception until 20 May 2021. Reference lists of relevant studies and systematic reviews were also reviewed for eligible articles. We used established palliative care search filters for each database, ³⁴ in addition to keywords such as ‘death doulas’ and ‘death midwives’. We also searched for grey literature using Google Scholar and ProQuest. The initial search results were uploaded to Endnote X9. Duplicates were removed, and two authors independently identified potential studies using title and abstract (YSQ and ZH). They then independently assessed full-text articles against eligibility criteria. Any uncertainty or challenges were deliberated, refined and resolved with the third author (GHS) at each stage as outlined by Levac et al. ²⁶ The search strategies are presented in Supplemental Appendix 1.

Stage 3: Study selection

Eligibility criteria are presented in Table 1. The inclusion criteria were: (1) English articles; (2) those published from inception to 20 May 2021; (3) articles that answered at least one of the research questions, including empirical studies, descriptive/narrative papers and unpublished theses. Exclusion criteria were: (1) newspaper or magazine articles; and (2) non-English articles. Review articles were excluded to prevent ‘double counting’ of evidence.

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Table 1.

Inclusion and exclusion criteria of study selection.

	Inclusion criteria	Exclusion criteria
Language	English	Non-English
Date published	From inception until 20 May 2021	–
Article format	Narrative articles Unpublished theses and studies Empirical studies	Reviews Newspaper articles Magazine articles
Content	(i) Roles and scope of practice (ii)  Reported advantages/ disadvantages of existing practices (iii) Training, certification of death doulas (iv) Trends and challenges in the death doula movement	Studies concerning labour, maternity, midwifery or birth doulas

Stage 4: Presenting the data

In the data charting process, the following information was extracted: (i) author(s), year, study location; (ii) article format, design and methods; (iii) study population (if applicable); (iv) number of death doulas mentioned in the article (if applicable); (v) background of death doulas (if mentioned); (vi) description of the article; (vii) findings related to the research questions. Two authors tested the appropriateness of the standardised data chart using five articles and adjusted it based on mutual feedback and discussion (YSQ and GHS). Formal data charting was then done independently by two authors (YSQ and ZH) to ensure accuracy.

Stage 5: Collating the results

We carried out a descriptive analysis of the extent and nature of studies using tables and charts. ²⁹ Given the heterogeneity of the articles, findings were summarised using the textual narrative synthesis approach described by Lucas et al. ³⁰ It is useful in synthesising findings from different types of research designs and defining the scope, similarities and differences among the included studies. ³⁰

Characteristics of included articles

The initial search yielded 2474 articles. After uploading results into Endnote and removing duplicates, 2268 articles were reviewed for eligibility using title and abstracts. Nineteen remaining articles were then assessed by reading full texts. Thirteen articles were finally included. The study selection process is shown in Figure 1.

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Figure 1.

PRISMA flow diagram depicting study selection process.

Article characteristics and findings are presented in Table 2. Included articles were published between 2011 and 2021, with the majority of them being conducted in the US (n = 4),^25,31–33 followed by Canada (n = 3),^34–36 Australia (n = 1), ³⁷ UK (n = 1) ³⁸ and Japan (n = 1). ⁹ The remaining studies involved participants from multiple countries (n = 3).^7,8,19 Among the nine published articles, five were formal primary studies (three qualitative studies,^7,19,36 one case report ³¹ and one descriptive cross-sectional study), ⁸ while four were opinion or narrative articles.^9,31,37,38 The remaining four articles were unpublished or grey literature – one PhD thesis, ²⁵ one Master’s thesis ³⁵ and two Master’s research papers.^33,34 Qualitative designs were most frequently used (n = 7),^{7,19,25,33–36} followed by narrative/opinion papers (n = 4),^9,31,37,38 quantitative design (n = 1), ³² and one study used both quantitative and qualitative methods. ⁸ Among the primary studies (n = 9), semi-structured interviews were the most common data collection method used (n = 6),^{7,19,25,33–35} followed by surveys (n = 3).^8,32,36 Most primary studies provided perspectives from death doulas (n = 8),^{7,8,19,25,33–36} and sample size ranged from 1 to 190. Only two studies provided perspectives from family members of clients,^25,32 one of which included both perspectives. ²⁵ Sample size ranged from four to nine family members.

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Table 2.

The characteristics and findings of included articles (n = 13).

Author– Study location	Article format – Design – Methods	Study population	Number of DD mentioned in the article	Background of DD(s)	Description of article	Findings
						Roles and scope of practice	Advantages/disadvantages of DD and current practices	Trends and challenges in the DD movement	Training and certification
Corporon 31 US	Published narrative article	–	Around 80 patients and families have been served by doulas	–	Narrative description about a voluntary DD programme at Baylor University Medical Centre in Dallas	– Advocating for patient needs – Comfort touch – Compassionate presence – Companionship for those without family support, feel lonely or abandoned or for caregiver respite	Advantages – Provides stability by being a continuous presence for the patient – Assigned to one patient at a time to concentrate on patient’s needs	–	Yes – Includes regular support groups to process their experiences, debrief and receive feedback from Rev. Pounders
Elliot 38 UK	Published opinion paper	–	–	–	The need for DD in EOL care	– Companionship – Supportive and informational care – Advocate for the dying person – Discuss practical requirements – Liaise with professionals – Be sensitive and respectful of the religious and spiritual beliefs of family – Be a guide into the next world	–	–	–
Lentz 32 US	Published case report – Retrospective survey measuring the effectiveness of PCD	9 family members of clients	1	Retired palliative care nurse	Narrative article about a self–envisioned model for PCD – an experienced expert nurse or APN in palliative care	– DD is a voluntary role – Supportive and informational care – Builds trusting relationship with patient and family and advocates for them – Has a strong personal religious and spiritual foundation	–	–	Expertise derived from experience as an expert nurse or APN
Trzeciak-Kerr 25 US	Unpublished thesis for PhD in Psychology – Existential-phenomenological qualitative study Methods – Semi-structured interviews – Thematic analysis	11 EOL doula volunteers 4 doulee family members	11	– Licensed mental health counsellor – Teacher – Retired businessman – Lawyer – Nurse	Aims – Lived experiences of EOL doula and clients’ family members of their participation in an EOL doula programme. – How EOL doulas can augment current palliative and hospice care services to improve and meet needs and wants of clients, as reported by their family members and EOL doulas that accompanied them.	– Just being present – Engage in activities wanted by the clients – Provide support to clients’ family and loved ones	Advantages – Relieve caregiver stress by providing respite – DD can work together with hospice to provide more holistic care because their roles are different – Provide emotional and spiritual support, unlike hospices which focus on physical issues – Hospice is time-limited but clients can receive DD services earlier than hospice eligibility criteria – No one would die alone – Relieves financial strain	–	Has comprehensive and ongoing trainings and supervision for DD – Jewish Family and Children’s Services: 10-h training, additional trainings, self-care workshops, supervision with one of the programme’s professional staff
Fukuzawa and Kondo 9 Japan	Published opinion paper.	–	–	–	The development of EOL doulas in the west and its potential application in Japan	Alleviate physical and mental suffering e.g. – Adjusting their posture – Listen to concerns of family and introduce necessary resources	–	–	Challenge of training doulas – HCP needed to provide counselling and guidance to avoid burnout – Personnel expenses related to doulas – Ethical issues due to close involvement in clinical settings
Henkel 33 US	Unpublished clinical research paper for Master of Social Work – Phenomenological analysis Methods – Semi-structured interviews – Content analysis	8 alternative EOL practitioners – 2 DD	2	– Journalism – Psychology – Nursing – Philosophy/ethics – Neuroscience – Holistic therapist – Education – Theology – Hospice volunteers	Aim: To explore the phenomenon of alternative EOL options.	– Bereavement support; may or may not be present during death – Advance care planning and honouring wishes – Provide training and education in community regarding alternative EOL options	Advantages – Substantial cost savings for families: service fees based on sliding scale, barter or free-of-charge – having control over what the dying wants	–	Yes
Mitchell 34 Canada	Unpublished research practicum report for Master of Social Work – Exploratory phenomenological research design Methods – Semi-structured interviews – Phenomenological data analysis	DD in Saskatchewan	8	–	Aim: – To explore and describe the emerging role of DD in Saskatchewan – To better understand skills and services they provide to individuals and families at EOL	Supportive and continuous presence Non-medical role – Important to be clear with boundaries especially for those with professional backgrounds for example, nursing Payment – sliding scale or voluntary – Fees for presentations to service groups	Advantages – DD can become involved earlier than most hospice programmes and be available in geographic areas that lack access to hospice services: differentiates them from hospice care volunteers	Controversy surrounding terminology – Lack of clarity about what is expected and offered by various death care practitioners	Price and format of training programmes varies widely
Krawczyk and Rush 7 Multiple countries (Australia, Canada, US and UK)	Published qualitative study Methods – Semi structured interviews via Zoom – Abductive and iterative analysis – Narrative social constructionist framework	DD from Australia, Canada, US and UK	22	Nursing Social work Midwife Birth doulas Training in mental health Chinese medicine Hospice volunteering	Aims: – To learn more about the development and practices of EOL doulas from the perspective of key stakeholders and early innovators in community-based EOL care – To better understand key issues that may support and challenge future development of this role	Refer to Table 2 and 3 in article Modes of practice – In-person – WhatsApp/Telephone – Advocacy in public events and media Jurisdictional differences shape some DD’s scope of practice – For example, in Canada, being paid to provide after-death care can be construed as funeral directing without a license	Advantages – Benefits wide spectrum of people – Can receive DD care before, during and after death, during diagnosis, receiving palliative care, during active dying and bereavement Disadvantages – A variety of practice titles used (refer to Table 1 in article) – Not all DD offer the same services for example, personal care, after-death support	Role boundaries can be easily blurred Disagreement over whether certain services should be provided	17 out of 21 had training with other EOL practitioners
Rawlings et al. 8 Multiple countries	Published descriptive cross-sectional study Methods – Online survey – Descriptive statistics for closed-ended questions – Thematic analysis of qualitative comments	DD	190	Nurse Allied health Aged care	Aim: – Explore the DD role from the perspective of DD – Reasons for becoming a DD – What the role entailed – Training associated with role	Refer to Table 4 in article Service fees – Some charge for services – Some have not been paid before but are considering charging for services 2/3 provide after-death services	Advantages – Offer services that HCP do not or cannot do Disadvantages – Respondents themselves were not sure whether all doulas offer the same services – family and clients may not be able to find a suitable DD easily – Variation in terminology describing their roles – some find DD to be diminishing and restrictive	Doulas are working without oversight and often without support Role overlap with HCP: HCP felt that they were doing DD work without the title	Training varies considerably – 1 day, 1 year, 200 h theory – Those without training may be health professionals who perceive their skills and knowledge to be transferable – 72.9% agreed or strongly agreed that DD should undergo training Divided on whether DD should be formally recognised and certified – 30.2% neither agreed or disagreed with the need for registration
Tumber 35 Canada	Unpublished thesis for Master of Gender Studies – feminist phenomenological study Methods – Semistructured interviews – Interpretative phenomenological analysis	DD – 5 provide services at hospitals, homes and hospices – 1 provides them only at the client’s home	6	–	Aims: – How do DD fit into a larger project of death reform? – How might hegemonic beliefs about death, gender, and social privilege complicate any roles they might have in death reform movements? – Relatedly, in what ways do DD resist or reinforce the commodification of care-work?	Not present at moment of death Death educators ‘Bridgers’ of gaps between EOL and funeral care Help to bridge gaps of service and better understand their options DD and midwives provide different services	Disadvantages – No studies on cost-effectiveness of incorporating DD in healthcare system – No safeguards to protect clients from potential abuse – Inconsistency of roles – funeral professionals are concerned that DD are not following a scope of practice and ethics	Instances of DD straying from practice boundaries DD and public lack coherent understanding about who DD are and what they do. DD risk using incorrect terms or offering services they legally cannot provide. – Funeral planning can only be done by funeral directors – ‘Midwife’ are used exclusively by registered midwives	Some DDs are against regulation Lack of regulation of DD training programmes – May pass on inaccurate information – Commodification of death and profiting off an unsustainable profession Demand for DD training outpacing demand for DD services
Gaspard et al. 36 Indigenous communities in Canada	Published primary study Methods: – Thematic analysis of post-session evaluation form – Online surveys 6 months after course	Students in a DD training course	86 future DD	Indigenous participants living in British Columbia communities who did not have a formal health care background	Aim: Post-intervention evaluation of a voluntary DD course	– Paperwork and legal requirements for EOL care – Advanced care planning – Sitting there and offering comfort	–	–	Course was offered in collaboration with Douglas College
Rawlings et al. 19 Multiple countries	Published descriptive qualitative study Methods – Semistructured interviews via telephone, Skype or zoom – Thematic analysis	DD (subset of participants from Rawlings et al. (2020))	20	– Nurse – Allied health professional – Aged care worker – Spiritual/pastoral carer – Massage therapist – Lawyer – Hospitality – Administrative – Funeral celebrant – Construction – Epidemiologist – Psychotherapist – Researcher	Aim: To provide a more detailed exploration of the activities, practices and interactions of DDs with clients and their families at EOL and provide insights into the points of interface with HCP	Differences in what DD and HCP offer (refer to Table 3 in article) DD may work with: – Family only – Dying person only – Both dying person and family – Post-death only Service fees – Some receive payment, some do not – Internal conflict about charging for services	Advantages – Circumvent fragmentation in care – Consumer-directed care – HCP are legally bound to their scope of practice and may not wish to go beyond that, but DD are not limited by that; DD can provide services HCP and community services would not offer Disadvantages – Clients and family may not find one DD that fulfils all their needs	– DD role is not valued possibly because it is not understood – HCPs frown on DD role as it lacks formal qualifications – HCPs are suspicious of DD as the role is not regulated – HCPs (especially nurses) are territorial, and feel threatened by DD – Role overlap with palliative care volunteers and HCP present	DD are conflicted about role regulation
Rawlings et al. 37 Australia	Published opinion paper	–	–	–	Narrative description of DD in relation to compassionate communities, role delineation and regulation and EOL care delivery	– Direct hands-on care – Social and emotional support – Funeral preparations – Simple companionship – Can be voluntary or paid	–	No 2 DD provide the same service with differences in background, skills, knowledge and experience; unclear how it fits into current health and social care EOL models	DD training varies in content and length, with no standardised training, and no central body for DD registration Australia: national code of conduct for unregistered health care workers covering DD – Subjected to investigations and consequences if code is violated

APN: Advanced practice nurse; DD: death doulas; EOL: End-of-life; HCP: healthcare professionals; PCD: palliative care doula.

Findings

Roles of death doulas

All 13 articles reported the roles of death doulas.^{7–9,19,25,31–38} We observed much heterogeneity in the death doulas’ roles. This role variance can be ascribed to clients’ specific demands, client-doula relationships, and individual practitioners’ preferences, with diverse backgrounds, personalities, skill sets and confidence in end-of-life care.^7,19,34,35 For example, some death doulas might choose to care for the dying during specific dying/death phases (e.g. pre-death phase, dying process, or after-death services). ⁸ In contrast, some of them focus solely on providing death discussion, education and companionship. ³³ Death doulas might also choose to work with the dying, family members, or both.^33,35 Despite the variance, this review identifies a commonality in death doulas’ role, which is centred on providing non-clinical, supportive care for the dying. Their main roles may include: (1) advocating for the dying and honouring their wishes; (2) being a resource person for navigating community resources; (3) providing companionship for the clients; (4) providing solace such as comfort touch and spiritual support; and (5) being a helper by providing caregiver respite. Figure 2 summarises the death doulas’ common and specific roles across the three phases of death and dying.

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Figure 2.

Common and specific roles of death doula across the three phases (pre-death, active dying, post-death).

Main findings

This scoping review has synthesised the literature on death doulas and the discourse surrounding the growing movement related to the roles, the impact of care, training and regulation, and trends and challenges.

The work of death doulas has grown popular partly due to greater advocacy by a growing ‘death positive movement’ to change societal attitudes towards death and dying and reform end-of-life care.^35,37 This review finds that death doulas undertake many roles in supporting the dying and their families. Roles vary between doula practitioners, which could be caused by the diversity in clients’ needs and requests. This role variance may also mirror the flexibility and the practicability of death doulas service to address the care gaps in the end of life and fulfil clients’ individual needs in different phases of death. This review also identifies some consistency in the roles undertaken by death doulas across the three phases of death, which may include providing solace, being an advocate, resource person, companion and helper.

Indeed, role diversity and flexibility in death doula services originate from existing traditional, religious, humanistic and health care roles while also integrating all these existing roles for the dying and their families. ⁷ This unique emergence of death doula roles also brings the drawback associated with role blurring, making it difficult to demarcate the boundary of death doula work between generalised support and professional service. Some tasks that death doulas perform are perceived as generalised support, such as communicating with clients, building rapport and relationships, or providing companionship and physical care.^10,25 In the meantime, they also render specialised care involving psychological, emotional, or existential support to form a compassionate space for clients. ¹⁰ Hence, its complex work nature and dynamic working environment make it challenging to clearly define the roles, formulate regulation guidelines for death doula practice, or establish formal working relationships within healthcare organisations. Although few countries have integrated death doula service into the palliative and end-of-life care service in hospitals, ⁷ there is limited empirical evidence to inform its clinical effects and patient outcomes.

Perhaps we could look at death doulas from another perspective. Like other non-allopathic treatments (e.g. Acupuncture, Reiki, Tuina), death doulas utilise experiential embodied knowledge to assess clients’ needs and desire, develop therapeutic relationships, and gauge the degree of transgressing professional role boundaries before carrying out personalised services.^7,38 The change in population profile, the shift in families’ capabilities to manage the dying in homes, ³⁹ and the possible gap and fragmentation of palliative and end-of-life care provision in the community settings ⁴⁰ have called for new solutions to manage modern dying and foster ‘a good death’. The emergence of the death doula care model seems to provide an alternative to complement the medicalised, end-of-life care models with person-centeredness and humanistic nature. ⁴¹

This review supports that death doulas offer numerous advantages in improving the dying and the families’ end-of-life care experiences. It is common for the caregivers to manage multiple tasks when caring for the dying at home (such as coordinating and implementing medical care, assisting in activities of daily living, etc.). These demands not only reduce one’s freedom,^42,43 but also significantly increase the risk of burnout and psychiatric illnesses. ⁴⁴ Sometimes, access to home care service can be problematic as it could be affected by multiple factors, such as availability, cost, the scope of services and other eligibility criteria. A systematic review on palliative home care service identified several service gaps, including poor communication and fragmented care transition and coordination between service providers and family members. ²⁴ Caregivers could be unprepared for home care’s physical and psychological demands, and sometimes palliative care nurses could not come on short notice.^22,23 In response to these gaps in end-of-life care, death doulas take on the supportive roles to render non-medical support to the dying and their families.^25,34 Most importantly, their services has the potential to benefit more families by reducing caregiver burden while improving the quality of remaining life of the dying. ³³

This review also identifies numerous challenges associated with the death doula movement. The lack of regulation is one of the significant issues because, at end-of-life, clients are often emotionally vulnerable and at risk of being exploited.^19,34 Numerous training programmes have been developed in recent years, with wide variation in its training process. The training contents are not standardised, and there is no quality control over the training processes, leading to the concern and wariness of other professionals, the public and potential users on death doulas’ competency, quality of service and ethical conduct. ³⁵ In response, efforts have been made by a few organisations to oversee the growth of the death doula movement, such as the International End of Life Doula Association and Lifespan Doula Association. They issue membership and credentials for death doula practitioners, set up a code of ethics, and stipulate the scope of practice agreement and core competencies,^45–47 contributing to the regulation of death doulas practice and setting the ground for its recognition and acceptance among the public.

Death doulas demonstrate mixed attitudes towards standardisation and regulation of their practices. This review finds that not all doulas show a strong inclination towards this move because some perceive that a regulatory body might place unnecessary restrictions on their practice and reduce their autonomy in care delivery. However, they also recognise the importance of accountability and having an oversight by a regulatory body so that clients could voice their complaints in the event of malpractice or subpar service. ³⁷ Regulation and standardisation of death doula practice would also ease the communication process to other professionals about their roles and services, ¹⁰ enhance public recognition of this new feature in end-of-life care, paving the way for its legitimacy and acceptance. At this stage, the expansion of death doulas movement seems to mirror the formative years of the birth doula movement which had begun much earlier during the 1960s and successfully established an international self-regulated body in 1992 that offers membership, training and certification. ⁴⁸ The death doula movement had established an international membership organisation in 2017, the National End-Of-Life Doula Alliance (NEDA), which offers similar services but does not seek national professional registration for its members at this point. ⁴⁹ We concur with the proposition by Krawczyk and Rush ⁷ that it remains crucial not to prematurely interfere with its development (e.g. to fully define the role descriptors at an early stage, to randomly place a certain number of criteria to the scope of practice, or to foreclose inquiry into how the roles may continue to evolve along the way).

Conclusion

Death doulas show the potential of a valuable supplement to end-of-life care service through demonstrating various roles and work flexibility to support the dying and the families with their needs and wishes to be fulfilled. Death doulas may represent a new move toward personalised end-of-life care, where the dying persons could directly control their death and die in the way they want. Their care impacts are noticeable, but other professionals and the public may not understand their roles and position within the health and social care systems. Possible obstacles in the death doula movement include inconsistency in existing training programmes and the lack of a regulatory body to oversee the practice. To better support its development and pave the way for its legitimacy, future research should shed light on the perspectives, experiences and outcomes of the dying and their families and explore healthcare professionals’ perceptions of its integration into the health and social care systems in different contexts.