CHAIR: Julianne Hilbers
a. More than a hospice in the home service
The ‘Warrnambool model’, is a not for profit organisation bringing together volunteers to care for those nearing the end of their life who want to die in their own homes, promoting death literacy and developing compassionate communities in end of life care. A small team of people had a dream to build a Hospice, but with no likelihood of government funding and too small a community to expect to raise the funds needed to sustain it they came up with an in home model of care. The End of Life Preparations workshop fills another gap in the community, providing knowledge around planning for your end of life journey. Monthly workshops include information on what happens when you receive a diagnosis of a life limiting illness and hints on home care, advance care planning, funeral and death plans - essentially how to get all in order so you can spend your time living well until you die. After attending the Compassionate Communities symposium in 2017 we realised we are missing community connectors and we feel since joining the NCCF project as a Groundbreaker has helped us connect with organisations working in similar spaces. Our hope is to have our city commit to be a compassionate community in end of life care and written into our city’s planning strategy. We are working towards a ‘space’ where information about the network of services available is created in some form. Take home messages- work with your community, planning took over six years, success is built on the great commitment of the committee, recognising the importance of management and coordination as the key area of financial investment and the utmost need to support the volunteers, creating a strong network and the flexibility to respond as needs arise.
b. Walking beside - End of life doula model of care
Harpreet Kalsi and Helen Callanan
Professional, committed and skilled End of Life Doulas are increasingly supporting the needs of the whole person at end of life. Their role is non-medical – and one of empowerment, choice and connection. Utilising a consultative co-design research approach, the “End of Life Doula Model of Care” was constructed as a framework demonstrating: • Who is an EOL Doula? • What do they do? • How do they work? • How do EOL Doula services fit within current models of care (including partnerships, early intervention, identifying co-morbidities) • A collection of case studies that outline the physical, psychological, social, spiritual and practical aspects that EOL Doula’s have facilitated with their clients The EOL Doula navigates and develops cohesive partnership with both formal and informal caring networks; demonstrating that it takes an integrated team, a village – (family, friends, palliative care, allied medical/health practitioners, aged care, complementary therapists, religious/spiritual support, neighbours, respite, council, pharmacist, funeral services) to support implementation of choices made by those at end of life. The exploration of the role of EOL Doula in existing “Models of Care (MOC)” in the palliative space, such as the Palliative Care MOC and the Aged Care MOC, has been vitally important in understanding the benefits inclusion of an EOL Doula can make at end of life. This model shows the integration, intersections and collaborations that already exist as EOL Doulas “walk beside” and bridge many of the gaps in service provision, education and care at end of life that have resulted from the growing demand for services. The “End of Life Doula Model of Care” also provides a platform for palliative care, health and aged care professionals to advocate for additional services to support clients to build capacity. This contributes to the wellbeing of the whole person, resulting in empowered enactment of choice.
c. Research end of life (EOL) doulas and their practices: an international perspective
Dr Annetta Mallon
conducted research interviewing EOL Doulas in four countries, asking about their experiences of creating and maintaining compassionate communities (#ComCom) for themselves and their clients, the role of death literacy in their work, and how they as EOL Doulas offer continuity of care for clients. As this project includes Australia, Canada, the UK, and the USA it is possible to consider country-specific trends and approaches, as well as comparing findings across and between the countries. Flinders University conducted Australian-only research about EOL Doulas, but from a positioning of EOL Doulas as unpaid care volunteers; contrary to this position, EOL Doulas themselves consider themselves as a separate field of workers, one with skillsets worthy of recognition in the form of payment. The qualitative semi-structured interview data sets I gathered were analysed using thematic analysis, and the findings represent a more comprehensive understanding of authentic practitioner experiences and perspectives from within the field. In addition to acknowledging a desire for more standardised income and fee scales for practitioners, the research found that death literacy places a prominent role in the work of EOL Doulas, and that #ComCom for and amongst practitioners are considered as important as the #ComCom networks around their clients. Healthy self-care is being taught in several courses in different countries, but is clearly emergent amongst geographically close practitioners as well. In terms of continuity of care and EOL Doulas, findings between countries is generally consistent, although subject to local and national government frameworks, which is sometimes a point of frustration. The importance of the social model aspect of EOL Doula work was another consistent theme in terms of supporting death literacy throughout social networks and #ComComs. A sense of professional identity may be discerned from this research.