Health and disability care providers' experiences and perspectives on end-of-life care needs of individuals with long-standing physical disability: A qualitative interview study.

BACKGROUND: Little is known about the specific needs and experiences of individuals with long-standing physical disability at end of life. AIM: To explore health and disability care providers perspectives and experiences in relation to end-of-life care needs of individuals with long-standing physical disability. DESIGN: Qualitative study using reflexive thematic analysis. SETTING/PARTICIPANTS: Semi-structured interviews were conducted with nine health and disability care providers from two Australian states. RESULTS: Five themes were constructed from the data: (1) The significance of place. All participants described how the end-of-life care experience was significantly impacted by the place in which dying occurred. (2) Knowing the person and their needs. Knowledge and familiarity with the individual with long-standing disability were seen as invaluable in terms of providing continued high-quality care. (3) Navigating a new care landscape. For disability support workers, struggling to adapt from providing disability support to end-of-life care was difficult. (4) Complexities of family involvement. Past experiences of families within the healthcare system had resultant impacts on care received by the individual with long-standing disability. (5) Being prepared. Participants felt more was needed in terms of end-of-life planning and discussions around end of life for this cohort. CONCLUSIONS: This research highlights a significant lack of continuity of care and problems at the intersection of the disability and health systems when providing end-of-life care for this cohort. Suggested areas for improvement include team approaches to enable continuity of care and dying in place, and a need for knowledge and skills in this area for all stakeholders.

Death doula working practices and models of care: the views of death doula training organisations.

BACKGROUND: The role of death doula has emerged in recent years, arguably as a result of overwhelming demands on carers, healthcare professionals and service providers in end-of-life care. Death doulas work independently without governing oversight and enact the role in various ways. The main driver of this evolving role is the organisations that train them. The aim of this study was to examine death doula training organisations' views with regard to DD business models, incorporating the death doula role into other existing models of care, and role enactment. METHODS: An electronic survey was administered to 15 death doula training organisations in 5 countries asking additionally that they disseminate the survey. Responses were received from 13 organisations, based in Australia (n = 4), the US (n = 4), Canada (n = 2), the UK (n = 1), Sweden (n = 1) and New Zealand (n = 1). This paper provides the qualitative findings from four open-text questions posed within the survey related to models of care. RESULTS: Qualitative data analysis was inductive, themes were determined in relation to: (1) standardised business model for death doulas, (2) death doulas incorporated into existing models of care or existing funding options, (3) death doulas who volunteer their services rather than charge money, and (4) role specialisation such as has occurred with birth doulas. CONCLUSIONS: The death doula role has the potential to be formally recognised in the future under national registration schemes, accompanied by death doula training required via certification. Until such time the death doula role will continue to evolve much as the birth doula role has, organically and unstructured. How and if death doulas are incorporated into existing models of health or social care remains to be seen as the organisations that train them push for independence, flexibility and fiscal independence.

Natural Death Versus Known Date-Of-Death: A Qualitative Study of Views on Voluntary Assisted Dying in an Online Course About Death.

The study aimed to describe views on Voluntary Assisted Dying (VAD), gleaned through qualitative analysis of participant responses to a set activity, run during the 2018 'Dying2Learn' Massive Open Online Course (MOOC). Data from 508 participants, most of whom identified as health professionals, were analysed using thematic content analysis, and themes generated. A large proportion of participants discussed their personal views related to VAD, specifically around choice, control, dignity, palliative care and dying at home, medical intervention, societal factors, the impact on those left behind, laws and regulations, dying 'naturally', advance care directives, and being in pain. In this study, participants had many different views on the act itself, often divisive, but also with common concepts such as respecting the choices and decisions of others.

A qualitative study exploring challenges and solutions to negotiating goals of care at the end of life in hospital settings.

BACKGROUND: Negotiating goals of care (GoC) with patients is an essential skill for all health-care professionals (HCPs) in hospitals. End-of-Life Essentials (EOLE) is a Commonwealth-funded project that delivers free, peer-reviewed, evidence-based, online education and practice change resources. To date, around 26 000 doctors, nurses and allied health professionals have registered to access the education. 'Planning End-of-Life Care-Goals of Care' features in the suite of EOLE modules and includes education around negotiating GoC with patients and families. OBJECTIVE: The aim of the study was to explore the views of module learners (HCPs) on challenges they have faced when negotiating GoC at the EOL with patients and families. METHODS: Participants were learners (HCPs) who registered to the EOLE website and engaged with the GoC module. Learners' responses to the question posed at the end of the module 'What are the hardest or most challenging things about negotiating GoC with patients and families?' were extracted for a 12-month period. Qualitative data were analysed thematically in NVivo V.12, guided by the theoretical framework of pragmatism. An open, inductive approach was used to code the data, with axial coding used to refine and organize themes and subthemes. RESULTS: A total of 451 learner statements were analysed. Five themes emerged from the data: (i) differing views and opinions; (ii) challenges to understanding; (iii) managing emotions; (iv) initiating the EOL conversation and (v) lack of professional knowledge or capacity. Five subthemes were also organized under the theme 'differing views and opinions'. CONCLUSION: Planning EOL care demands high-level, compassionately skilful and sensitive care and services, which are in line with the patient's and family's wishes. In practice, however, there are many challenges to this, such as ensuring that patients, families, and HCPs are aware of different expectations regarding future health-care possibilities, and that HCPs are prepared for negotiating GoC to achieve quality and safe EOL care in hospitals.

Impact of the COVID-19 Pandemic on Funerals: Experiences of Participants in the 2020 Dying2Learn Massive Open Online Course.

A Massive-Open-Online-Course (MOOC) on death and dying (Dying2Learn) was offered in 2020, designed to build conversations about death as a natural part of life. In week 1, the content focused on how today's society engages with death through the language we use, humour, public mourning and funerals. This study investigated 2020 MOOC participants' responses to an online activity reflecting on funerals and memorials during the time of COVID-19. From this activity, n = 204 responses were analysed qualitatively. Themes included the positives and negatives of virtual funeral attendance (e.g. opportunity to have a way to participate when travel barriers existed, versus a sense of impersonal voyeurism); and the challenges related to the inability to physically comfort the bereaved due to physical distancing requirements. Comments made as part of this MOOC activity provide a unique insight into the community's experience of funeral changes necessitated by COVID-19, with important implications for the grieving process.

"It's given me confidence": a pragmatic qualitative evaluation exploring the perceived benefits of online end-of-life education on clinical care.

BACKGROUND: Hospital admissions for end-of-life care are increasing exponentially across the world. Significant numbers of health professionals are now required to provide end-of-life care with minimal training. Many health professionals report they lack confidence to provide this care, particularly those in acute hospital settings. This study explored the perceived benefits of online education on health professionals' capacity to provide end-of-life care. METHODS: This qualitative study adopted a pragmatic approach. Thirty semi-structured interviews were conducted with allied health professionals, nurses and doctors who had completed a minimum of three End-of-Life Essentials online education modules. Interviews were held on line and face-to-face, audio-recorded and transcribed verbatim. Demographic data were also collected. Three major themes and one minor theme were constructed from the data using inductive thematic analysis. RESULTS: Themes were (1). Perceptions of preparedness to provide end-of-life care, (2). Shifts in approaching end-of-life discussions and (3). Motivation for engagement with online modules. Participants reported validation of knowledge and improved confidence to have end-of-life discussions with patients, carers and team members. They also noted improved ability to recognise the dying process and improved conversations with team members about patient and carer needs. Videos portraying a novice and then more able end-of-life discussions were particularly valued by participants. Modules provided practical guidance on how to engage in discussions about the end of life and care needs. Participants were self-motivated to improve their knowledge and skills to enhance end-of-life care provision. Continuing professional development requirements were also a motivator for module completion. CONCLUSIONS: This study explored health professionals' perspectives about the perceived benefits of online education modules on their clinical practice. Module completion enhanced participant confidence and self-reported improved competence in end-of-life care provision. Findings build on existing research that supports the valuable role online education plays in supporting confidence and ability to actively engage with patients, carers and colleagues about provision of end-of-life care; however, self-report cannot be used as a proxy for improved clinical competence.

Compassionate communities - What does this mean for roles such as a death doula in end-of-life care?

OBJECTIVES: To consider death doulas in relation to compassionate communities, role delineation and regulation, and end-of-life care delivery. STUDY DESIGN: A narrative describing the emerging role of death doula in the increasingly complex end-of-life space. METHODS: A discussion of death doula in end-of-life care. RESULTS: Compassionate communities calls for the mobilisation of informal care around the dying and their families. Formal health services as well, including palliative care, are already providing care as are death doulas. The death doula role is not yet fully articulated and has layers of complexity associated with a lack of formalised training and no registration. CONCLUSIONS: There is much to consider in the informal caregiving space at the end of life. Conversations are required for coherent, coordinated care delivery in what has become a complex arena. There are those who are in paid positions, volunteers, those who are negotiating fees, as well as role overlap and role blurring.

Can Exposure to Online Conversations About Death and Dying Influence Death Competence? An Exploratory Study Within an Australian Massive Open Online Course.

A Massive Open Online Course, Dying2Learn, was designed to foster community death conversations and strengthen community awareness of palliative care and death as a normal process. This exploratory study used a pre-post prospective design to determine if participation in Dying2Learn and exposure to online conversations about death and dying resulted in any significant influence on death competence in 134 participants who completed the Coping-with-Death-Scale both at the beginning and end of the course in 2016. Death competence refers to a range of attitudes and capabilities people have for dealing with death. Results at the end of the course indicated that engagement in Dying2Learn led to significant improvements in death competence scores over time (medium-to-large effect size). The positive impact was greater for those who completed more of the course, and effectiveness did not depend on sociodemographic characteristics. In conclusion, this study found that an online learning platform in the form of a Massive Open Online Course could engage community members in meaningful social discussion about death and dying, and that exposure to these conversations was beneficial for all participants regardless of previous exposure to death. Further exploration is required to determine whether this change in death competence will have an impact on participant's behavior in the community regarding death conversations and preparedness.

Correlates of perceived death competence: What role does meaning-in-life and quality-of-life play?

OBJECTIVE: Understanding factors that are associated with more adaptive death attitudes and competencies can inspire future health-promoting palliative care strategies and inform approaches to training and development for health professionals. The potential importance of meaning, purpose, quality, and values in life for promoting adaptive death attitudes has been highlighted, but there is limited research in this area, particularly in relation to death competence. The purpose of this cross-sectional study was to develop an understanding of demographic and life-related factors associated with perceived death competence, such as meaning in life and quality of life. METHOD: During the course enrollment period of a Massive-Online-Open-Course about death and dying, 277 participants completed questionnaires on death competence, meaning in life, quality of life, and sociodemographic background. RESULT: Findings indicated that greater presence of meaning in life, quality of life, age, death experience, and carer experience were each statistically significant unique predictors of death competence scores. Life-related variables were more strongly associated with death competence than demographic variables. Bereavement experience and experience caring for the dying was associated with greater death competence, but there were no differences on death competence between health professionals and the general community. Above all other factors, the presence of meaning in life was the strongest predictor of higher perceived competence in coping with death. SIGNIFICANCE OF RESULTS: The findings demonstrate important interconnections between our attitudes about life and death. Knowledge of factors associated with poorer death competence may help identify those at risk of greater distress when facing death, and might prove useful additions to bereavement risk assessments. Understanding factors associated with greater death competence in health professionals and volunteers may help predict or prevent burnout and compassion fatigue, and help identify who would benefit from additional training and support. Future longitudinal studies including both health professionals and the general community are needed to determine the effect adaptive attitudes toward meaning in life can potentially have on bolstering subsequent adaptive coping and competence regarding death and dying.

The contribution of a MOOC to community discussions around death and dying.

BACKGROUND: Advances in medicine have helped many to live longer lives and to be able to meet health challenges. However death rates are anticipated to increase given the ageing population and chronic disease progression. Being able to talk about death is seen to be important in normalising death as part of life and supporting preparedness for death. Massive Open Online Courses (MOOCs) provide opportunities for the community to engage in collaborative learning. A 5 week MOOC was developed covering four main topics (language and humour, representations of death, medicalisation of dying, and digital dying) aiming: To enable participants to openly and supportively discuss and learn about issues around living, death and dying, To explore the normally unheard opinions and views of Australians around death and dying, and To determine what effect online learning and discussions offered through the MOOC had on participants' feelings and attitudes towards death and dying. METHODS: Data was captured on engagement rates in the various MOOC activities. Death Attitudes were measured by five items representing the MOOC's learning objectives and completed at enrolment and conclusion. MOOC Satisfaction was measured with six items at the end of the MOOC. Descriptive statistics were produced for each variable and Chi-Square Tests of Independence assessed the extent of the relationship between categorical variables. Socio-demographic variables were examined as predictors of the outcome variables of MOOC engagement, MOOC satisfaction, and death attitudes. Ethical approval was received from Flinders University Social and Behavioural Research Ethics Committee (Project No. 7247). RESULTS: One thousand one hundred fifty six people enrolled in the Dying2Learn MOOC with 895 participating in some way. Enrolees were primarily female (92.1%). Age ranged from 16 to 84 (mean = 49.5, SD = 12.3). MOOC satisfaction scores were high. Responses to the experience of participating in the MOOC were very positive, with mean scores ranging from 4.3 to 4.6 (aligning with agreement and strong agreement to statements on the value of participating). Death Attitudes were positive at commencement but increased significantly following participation. CONCLUSIONS: The Dying2Learn MOOC provided an environment that enabled open and supportive discussion around death and dying and influenced attitudinal change.

Deathbed phenomena reported by patients in palliative care: clinical opportunities and responses.

BACKGROUND: Reports from patients on seeing or hearing a dead relative or dreaming a highly significant dream at the end of life can be perplexing for health professionals who may wonder how best to respond. AIM: The aim of this study was to systematically review the literature on deathbed phenomena (DBP), and provide suggestions for a clinical response to dying patients' recounts of these hard-to-explain phenomena. METHODS: The authors searched for relevant studies which reported on DBP within a palliative care context. Eligibility criteria were established, a review process was employed and a narrative synthesis approach was used to interpret the data. RESULTS: In total, eight papers met the inclusion criteria. Reported prevalence of DBP ranged from 24-51% with common themes described. Distinguishing between DBP and hallucinations was discussed, requiring very different clinical responses. Phenomena were timed most often in the last hours or days before death. Experiencing a DBP was, in most cases, deeply meaningful, bringing comfort, peace and reassurance. Health professionals were not surprised to hear of a DBP, but were not always well prepared to respond appropriately. CONCLUSIONS: Rather than simply dismissing DBP as medication related or the physiological effects of dying, the significance of these events and the comfort afforded by them to patients and carers should be recognised. Disclosure of DBP may enable health professionals to discuss more spiritual and existential concerns, which have the potential to offer hope, meaning and connection. We propose strategies and approaches for strengthening compassionate clinical practice in this area.

Supporting service change in palliative care: a framework approach.

BACKGROUND: Palliative care services are increasingly identifying areas for improvement, then trying to create appropriate changes in response. Nurses in particular are often expected to take leading roles in quality improvement (QI) but are not necessarily trained or supported in these processes. METHODS: A framework approach to change was developed to guide services through a change cycle and delivered via workshops by representatives of three Australian national projects. Participants were predominantly nurses (80%), with the majority (63.7%) over the age of 50. FINDINGS: The workshops and the framework were positively evaluated, with participants feeling confident in a number of QI-related activities following workshop training. CONCLUSION: Recognising and addressing problems in clinical practice and service delivery is an important way for nurses to ensure quality care for patients; however, they need support in developing the skills and knowledge that are essential to successful QI activities.

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

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.

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.

Emerging health and social policy considerations for safe and quality end-of-life care in Australia - the evidence, gaps and challenges.

Recognition of the importance of end-of-life care will enable improvements in the quality of care delivered to patients and their families. Australia is experiencing an increasing number of deaths, (many expected), with an aging population who are living longer, often with multimorbidity. This makes end of life care a priority. The last year of someone's life takes place in a complex healthcare system, with increasing pressures on care delivery, placing the spotlight on health service providers to ensure that teams and individuals are supported and enabled to provide such care. Two rapid literature reviews identified best practice principles and processes for delivering safe and high-quality end-of-life care in acute care, aged care and community settings. The reviews identified that end-of-life care is experienced within the whole health and social care system, including hospital admissions interspersed with care in the community, outpatient and emergency department visits and potentially admission to a hospice. Much of this last year of life is spent at home, which may be a personal residence, an aged care facility, prison, supported accommodation or even on the streets. Transitions across settings requires seamless care, as well as organisational readiness to deliver safe and culturally appropriate care. This is more important now with end-of-life care subject to quality assurance mechanisms within the National Safety and Quality Health Service Standards (2nd edn): Comprehensive care. This requires all sectors to work collaboratively when caring for someone at the end of their life in order to see positive changes in care outcomes.

End-of-life care considerations for gay, lesbian, bisexual, and transgender individuals.

Negative social attitudes, discrimination, and homophobia affect gay, lesbian, bisexual, and transgender (GLBT) individuals during their lifetimes. These experiences can affect how these individuals access health services and interact with health professionals, resulting in adverse outcomes compared with their heterosexual counterparts. End-of-life experiences can also be shaped by these factors. There are implications for health professionals in terms of equity of access to targeted health care, preventive screening, and visibility in policy, as well as in principles of inclusiveness, dignity and respect, and competence in care. This article takes a brief look at some of the issues specific to the end-of-life care of GLBT individuals, using a case study as an illustrative example. Holistic care at the end of life is a familiar concept to palliative care nurses, but it is important to place greater emphasis on considering competence in aspects of care relating to sexuality.

Teams and continuity of end-of-life care in hospitals: managing differences of opinion.

BACKGROUND: Recognised as an essential element in end-of-life care by the Australian Commission on Safety and Quality in Health Care, effective teamwork can enhance the quality and safety of end-of-life care for patients in hospitals. End-of-Life Essentials (EOLE) is a Commonwealth funded project that delivers peer-reviewed, evidence-based, online education and practice change resources for doctors, nurses and allied health professionals working in hospitals. 'Teams and Continuity for the Patient' features in the suite of EOLE modules and includes education around effective teamwork in end-of-life care. The aim of this study was to explore the views of module learners on managing differences of opinion among staff regarding patient care management. METHODS: Participants were learners (health professionals) who registered to the EOLE website and engaged with the Teams module. Learner responses to a question posed at the end of the module 'How do you manage differences of opinion among staff regarding patient care management?' were extracted for a 12-month period. Qualitative data were analysed thematically in NVivo V.12, with pragmatism as an overarching theoretical framework. Data were coded using an inductive, open approach, and axial coding was used to organise the codes into themes and subthemes. FINDINGS: A total of 293 learner statements were analysed, with subthemes organised into three overarching themes: prioritising the patient, team collaboration and communication skills and emotional awareness. CONCLUSION: In complex, fast-paced, hospital environments, the potential for conflict among teams is high. Quality care relies on team members who work in unison, who can also recognise conflict emerging and respond in respectful and appropriate ways. In this study, the management actions reported by health professionals as proving helpful when differences of opinion among team members arise, are valuable to organisations who are considering how to prepare for quality and safety accreditation.

"Holding back my own emotions": Evaluation of an online education module in pediatric end-of-life care.

Providing quality end-of-life care to a child who is dying in hospital can be stressful and challenging, and health professionals often feel ill-prepared and require additional support. End-of-Life Essentials offers online education modules for health professionals working in acute hospitals, including one on end-of-life care in pediatric settings. This study aimed to evaluate this module and explore learners' views on challenges faced when caring for a dying child and their family in a hospital setting. Learners comprised nurses, doctors, and allied health professionals. A quantitative pre-/post-evaluation analysis was conducted using learner data (n = 552) on knowledge and skills gained from engagement with the module, along with a qualitative thematic content analysis on learner responses (n = 395) to a post-evaluation free-text response question, between May 2019 and May 2020. Learners' post-evaluation ranks of perceived knowledge, skill, attitude, and confidence were significantly higher than pre-evaluation ranks (p < 0.001). Effect sizes were small to medium, ranging from 0.31 to 0.38 (95% confidence intervals from 0.23 to 0.45). Emerging themes from the qualitative data were dealing with emotions, and communicating effectively. This evaluation suggests that the Pediatrics module could be a useful online learning resource for health professionals. A planned longitudinal study will further investigate practice change.

An international survey of Death Doula training organizations: the views of those driving Death Doula training and role enactment.

Context: Death Doulas are working globally to provide non-medical end-of-life care. They have different training experiences and views on the role and whether it should be standardised. Objective: To seek the views of organisations responsible for training Death Doulas in order to determine what the drivers are behind this emerging role. Methods: We conducted an online survey with Death Doula training organisations in five countries utilising both a targeted and snowball approach. Qualitative analysis was undertaken with themes pre-determined (apriori) due to the nature of the survey categories. Results: In total, representatives from 13 organisations in Australia, New Zealand, Sweden, Canada, United Kingdom, and United States responded. The organisations had provided training for 0 to 20 years, with one just starting and another training birth doulas and now expanding. Owners and trainers hold an array of qualifications such as academic, medical, non-medical, and life experience. Curricula have usually been developed locally, and not always included pedagogical consideration, a strategic business model, nor mapping processes such as gap analysis. The organisations are run similarly, and curricula have several consistent topics but with distinctly different approaches. Trainers' views are also mixed about the way to proceed with registration of the Death Doula role. Conclusion: The contrasting views of training organisations explain much of the ambiguity of Death Doulas themselves regarding standardisation of registration, education and role enactment. If heading towards the ultimate goal of professionalisation of the role then a challenging path lies ahead with little in the way of agreement in what this would require.

What is a compassionate response in the emergency department? Learner evaluation of an End-of-Life Essentials online education module.

OBJECTIVE: To evaluate the End-of-Life Essentials education module 'Emergency Department End-of-Life Care' and explore learners' views on what constitutes a compassionate response in the ED. METHODS: The present study used a multi-methods approach. Learners comprised a mix of nurses, doctors and allied health professionals. A quantitative pre-post evaluation analysis of learners' (n = 959) knowledge, skills, attitude and confidence was conducted, along with a qualitative thematic content analysis on learner responses (n = 538) to the post-evaluation question, 'What is a compassionate response for you in the emergency department?' Data were extracted for a 12-month period, 6 May 2019 to 6 May 2020. RESULTS: Learners' post-evaluation ranks of knowledge, skill, attitude and confidence were significantly higher than the pre-evaluation ranks (P < 0.001). Emerging themes from the qualitative data were organised into three overarching categories: communication skills (e.g. listening and use of names), care discussion and provision (e.g. provide information and discuss care plans) and humanising healthcare (e.g. emotional support and empathy, taking the time, and offering kindness and comfort). CONCLUSION: The 'Emergency Department End-of-Life Care' module had a significant positive impact on learners in relation to perceived knowledge, skill, attitude and confidence. This evaluation suggests that the End-of-Life Essentials ED module could be a useful online learning resource for health professionals.

End-of-life doulas: A qualitative analysis of interviews with Australian and International death doulas on their role.

Death doulas (DD) are working with people at the end of life in varied roles with more clarity needed around their role and place within the health and social care systems. The aim of this work is to explore the DD role in end-of-life care from the perspective of DDs. A sub-group of 20 DDs from a larger quantitative survey participated in semi-structured telephone Skype or Zoom interviews. Interview data were analysed using thematic analysis. Seven themes emerged from the qualitative analysis: what a DD offers, what a DD does, challenges and barriers, occupational preferences, family support, contract of service/fee and regulation. There is a general perception that healthcare professionals (HCP) do not understand what it is that DDs do; thus, the current study has helped to demystify the DD role and potentially reduce suspicion. The lack of a DD business model sees inconsistencies in what services each DD offers and what patients and families can expect. End of life is complex and confusing for patients and families and there is a need to further explore the DD role and how it can work when there are many inconsistencies in working practice. More research is required to look at the interplay among DDs, HCPs and palliative care volunteers in addressing the gaps in care provision and how these relationships might be more seamlessly managed.