Abstracts are listed alphabetically by presenter name.
Transforming the Landscape: Exploring the experience of Australian Rural Palliative Medicine Specialists
Dr Alison Blight, Advanced Trainee in Palliative Medicine & Provisional Fellow in Pain Medicine, Newcastle NSW
This study used semi-structured interviews of 11 Fellows of the Australasian Chapter of Palliative Medicine (FAChPM) who identified as currently working in rural areas of Australia (ASGC RA 2-5) to explore their reasons for commencing rural practice in Palliative Medicine (RPPM), experience of challenges and rewards of RPPM, potential reasons for leaving RPPM, and their views on barriers to new AChPM Fellows choosing rural practice in Australia. Participants were from (or had also worked in) all states and territories except South Australia and ACT, and most were based in RA2 or 3 areas, however 8 were responsible for providing services to RA 4 or 5 regions directly by home visits or Outreach Services. 8 were female and 4 were aged >60 years. The majority of participants had been working in RPPM for more than 2 years, and the interviews were conducted between January and April 2016.
(1) “Reasons” for commencing RRPM included: preference for rural lifestyle (or escape from city living), desire to contribute to areas of need, previous personal experience of rural practice, and partner preference or experience of rural living.
(2) “Challenges” included: professional isolation, lack of peer support, understaffing, lack of resources, geographical challenges, attitudes and beliefs of other health care professionals (HCP) about Palliative Care, developing a service and providing leadership, difficulties with bureaucracy, administrative systems, management, contracts or remuneration, fulfilling CPD requirements and professional development, and the challenge of boundaries in availability and familiarity in smaller communities.
(3) ‘Rewards” included: making a difference to whole communities (not just individuals) and the appreciation and gratitude expressed, the depth & diversity of practice, satisfaction with continuity of care, facilitation of best practice (particularly death at home or in community), connection to landscapes and country, “blank canvas” opportunities to grow new services and creative response to challenges, teamwork and growth of other HCP, academic, educational and career opportunities. Some participants even reported positive experiences with local management – feeling supported, provided with flexibility, and given helpful responses with resource support when under stress.
(4) “Leaving” included: potential personal or partner health issues (including age/retirement), lack of support or burnout, worsening organisational dysfunction or resource limitation, and extended family issues.
(5) “Barriers” included: lack of job opportunities, family issues, isolation, lack of peer support, security of employment, cover and leave, access to CPD and professional development. Perceptions of rural palliative care practice were highlighted, and that it is not a fit for everyone. Concerns were also expressed about junior Fellows of the AChPM undertaking solo RPPM.
As one participant aptly stated, RPPM is about “converting attitudes and facilitating practicalities”. No doubt, these specialists are transforming their landscapes.
Presenter Bio: Dr Alison Blight is currently a Provisional Fellow in Pain Medicine with the Hunter Integrated Pain Service, Newcastle. She trained in Palliative Medicine from 2012 to early 2016, also in the Newcastle region. She has a background in pathology and public health prior to commencing medicine in 2001.
What does it take for people to die where they choose and what effect does this have on formal and informal caring networks?
Professor Debbie Horsfall, School Social Sciences and Psychology, Western Sydney University, firstname.lastname@example.org, 02 4736 0093.
Abstract: What happens to caring networks when they care for someone who has chosen to die at home? What can the end of life sector do to better support people’s choices about place of death? These are questions that the Caring at End of Life research project sought to answer over a 6 year period. Using community development and social capital as our conceptual frameworks we explored the function and purpose of caring networks for the dying person, primary carers, members of caring networks and the wider community. Through the arts-based methods of photo voice and visual network mapping we spoke with over 300 primary carers, informal care networks and service providers in interviews and focus groups. While caring is often portrayed as a burden and a drain on social capital what emerged in this research were stories of love, joy and privilege and caring work that contributed to social capital. We also found that home, as place of dying, is where communities can learn about dying and death. This engaged learning built death literacy: an outcome of engagement in, and participation with, the care of the dying and each other. This experience was transformational at individual, network, service provider and community levels. It is this transformation which we have defined as ‘death literacy’, or practice wisdom. People and communities with high levels of death literacy have context specific knowledge about death, dying and caring at end of life and the ability to put that knowledge into practice. Once this happens death literacy becomes a resource that people can use for the benefit of themselves, their networks and their communities. This is important if more people are to be supported to die their place of their choice.
Presenter Bio: Debbie is a passionate leader in the field of inclusive, democratic, qualitative research in health and social care. Her transformative agenda privileges people’s voices during a myriad of challenging life events. Working with informal carers and service providers in end of life care her current research explores how dying at home develops death literacy, health promoting palliative care, creative partnerships and compassionate communities.
Providing end of life care in rural and regional Australia: optimal expectations versus actual end of life care.
Claire Johnson, Hugh Senior, Peta McVey1, Angela Ives, Geoffrey Mitchell
1 Senior Lecturer, Sydney Nursing School, The University of Sydney, email: email@example.com , 0431 101 706
Background: Providing the best care at end of life (EOL) (the last 6- to 12 months of life) has been identified as a health priority. With an increasingly ageing population, the number of people dying with cancer in Australia is expected to increase substantially. This increase in cancer deaths will produce a range of health challenges including a rise in the demand for medical and support services and for high quality EOL care options. In rural and regional settings in Australia, limited access to specialist palliative care increases general practitioner (GP) responsibility in this area. At present, little is known about how general practice conducts end of life care in Australia.
Aim: To explore the characteristics of optimal end of life care from the perspective of people diagnosed with advanced cancer, their carers’ and their GPs; and to describe the extent to which rural and regional consumers perceived those expectations were met.
Method: A qualitative design with semi-structured interviews was used to explore the characteristics of rural general practice optimal EOL care, from the perspective of people diagnosed with cancer, their carers’ and GPs; and to investigate the extent to which actual end of life care addressed these characteristics. Thirteen interviews were conducted with six patients, three informal carers, and four GPs. Themes arising from the data were examined from the perspective of optimal practice and the participants’ experiences of whether those standards were met.
Findings: Seven themes arose from the data: accessibility and trust, knowledge of the patient, good communication skill, psychosocial support and patient empowerment, symptom management and practical issues, care coordination, and recognising carer needs. The actual care received came close to matching expectations, with the exception that sometimes symptom control was difficult to achieve.
Implications: The demand for end of life care is predicted to escalate in the coming years, therefore it is imperative that this issue is addressed so that the primary care workforce is ready to transform end of life care in this setting. Knowing what patients are looking for should shape the education and training of undergraduate students and GP registrars to meet the future demands.
Presenter Bio: Peta McVey has worked in the field of palliative care/oncology in Sydney for over 30 years. She has experience of working across a range of clinical settings from acute care, hospice to community. Peta currently works as a Senior Lecturer with the University of Sydney teaching and coordinating palliative care, chronic conditions and aged care units of study to both undergraduates and post-graduates. Her current research projects are examining the quality of end of life care and practices in residential aged care and developing end of life care skills for primary health care professionals.
dying2learn: The first ever Australian MOOC on Death and Dying.
Sanderson C,1,2,3, Rawlings D2, Parker D4, Miller-Lewis L,2 Tieman, J2.
1Calvary Health Care Kogarah, NSW, Australia
2 School of Medicine, the University of Notre Dame, Sydney, NSW
3 CareSearch, Flinders University, Bedford Park, SA
4 University of Western Sydney
Community attitudes to death and dying may have a significant impact on how people deal with the inevitability of their own death, and that of people close to them. Harnessing the power of the social media to support informed discussions is an important challenge for palliative care practitioners in the 21st century, and a Massive Open Online Course (MOOC) provides a unique opportunity for online dialogue on these issues. Dying 2 Learn is the first ever Australian MOOC on death and dying, which has been developed by CareSearch, and is being run in July 2016.
The MOOC addresses issues related to:
- Humour, and the language used about death
- Memorialisation of the dead – public and private
- Representations of death in art, film and television
- Modes of death and dying in 21st century Australia
- Medicalisation of death
- Digital dying
The free course is delivered over 4 weeks, and the target group is “ordinary Australians” ie those who are neither health care workers, nor currently palliative care patients, although it is open to all comers.
Participants explore a curriculum developed by the CareSearch team. A diverse mix of online materials has been curated, with the aim of educating and stimulating discussion amongst participants, followed by optional activities intended to deepen and personalise their engagement with the information, and to encourage reflection. The MOOC does not privilege a palliative care perspective on death and dying, but rather allows participants to explore materials from various perspectives and to respond in a personal way.
The experience of planning, developing and delivering this MOOC will be described. The evaluation of the MOOC will provide unique information about Australian community attitudes, and the impact of the MOOC on those attitudes is being studied using a pre-test / post-test methodology. Preliminary findings from the evaluation will be presented.
Presenter Bio: A/Professor Christine Sanderson is a palliative care researcher and clinician based at Calvary, Kogarah. She has also worked as part of the CareSearch team for 10 years. Her background is in sociology and pubic health, She has interests in health services research, public health, and knowledge translation, and how palliative care research can be used to make a real difference to the experiences of patients at the end of life, and to change the culture of health care systems.