‘Death Doulas’ have emerged as a relatively new role supporting dying people and their family members; however there is a lack of clarity around how the role is enacted, and around the death doula role within health and social care systems. This study aimed to explore the ambiguity of the role of death doulas in end‐of‐life care including the skills, training and experience of death doulas; how the role is communicated to the community; and the relationships to palliative care providers and other health professionals. People identifying as death doulas were invited to participate in an online survey between April and June 2018. Ethical approval was obtained. A descriptive cross‐sectional study was conducted, and purposive sampling was used to survey death doulas registered with death doula training organisations, newsletters and email distribution lists. Questions were based on the researchers’ previous findings about the role. One hundred and ninety completed or partially completed surveys were received. Results showed diversity within, and some commonalities across the sample in terms of: training, experience and skills; Death doulas have emerged not only as a response to the overwhelming demands on families and carers, but also demands placed on health care professionals (including palliative care) at the end‐of‐life. They have identified gaps in health and social care provision, perhaps taking on tasks that health professionals don't have responsibility for. However, the roles and scope of practice of death doulas is not clear‐cut even within their cohort, which can then make it hard for patients and families when choosing a death doula, especially as a lack of regulation and standardised training means that doulas are working without oversight, and often in isolation.

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.

word count: 242Reference count: 24 Table and ObjectivesThe aim of this study was to understand caregiver factors associated with caring for someone with LTOT from the perspectives and experiences of caregivers themselves. MethodsThe qualitative study used semi-structured interviews. The study was conducted in two states in Australia. Participants (n=20) were self-nominated caregivers of people receiving LTOT for refractory breathlessness in the palliative setting. ResultsData analyses established one overarching theme titled: 'Oxygen giveth (something to help caregivers relieve breathlessness) and oxygen taketh away (from patients who lose some autonomy)'. The theme captured caregivers' feelings of extreme distress in response to witnessing refractory breathlessness, and oxygen fulfilling several critical and beneficial roles in this context. In parallel caregivers also explicitly and implicitly articulated several downsides to the use of LTOT. ConclusionCaregivers find caring for someone with refractory breathlessness extremely distressing. The benefits of LTOT are often over-estimated while its potential harms are under-estimated. As significant stakeholders in care of people receiving LTOT caregivers should be provided with opportunities to collaborate with clinicians in evidence based decision making and efforts should be made to provide them with information and education about the most effective pharmacological and nonpharmacological strategies to manage refractory breathlessness in a palliative care setting including the appropriate use of LTOT to enable them to do so. 4Introduction and background

Overall, 1 in 3 participants gained net clinical benefit at 10 days.

Background: Chronic breathlessness syndrome in the context of advancing disease is distressing for all concerned. Oxygen is commonly prescribed in this setting; however, little is known about the perspectives of breathless people who either are on oxygen or are yet to have it prescribed. Aim: To understand and describe the perspectives and experiences of breathless people towards oxygen use at home. Design: This qualitative study utilised an interpretive description approach using semi-structured interviews and thematic analysis. Setting/participants: A total of 19 people with chronic breathlessness syndrome living in South Australia participated in semi-structured interviews. Participants were divided into sub-groups according to whether they were chronically breathless and (1) not using home oxygen ( n = 6), (2) using funded home oxygen for severe hypoxaemia ( n = 7) and (3) using home oxygen for palliation outside of funding guidelines ( n = 6). Results: Three main themes were identified: (1) managing distress and living with chronic breathlessness syndrome, with or without oxygen, requires a range of self-management strategies; (2) expectations of oxygen use: ‘Not as good as I thought it would be’; and (3) the stigma of using oxygen: the visible and invisible. Conclusion: People living with chronic breathlessness struggle daily with both the progression of the underlying disease and the distressing nature of the syndrome. While oxygen does provide benefit for some people, its use and the perceptions of its use are often associated with both the visible and invisible manifestations of stigma. Clinicians need to promote self-management strategies and give careful thought to the prescribing of home oxygen, especially outside the current funding guidelines.