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.
The unmet palliative care needs of residents in residential aged care facilities: What a scoping study can tell us about future needs.
Backhouse, C1, Lobb, EA 1,2,3 Davis, JM1, Oehme, J.1
1Calvary Health Care Kogarah, NSW, 2217, Australia
2 School of Medicine, the University of Notre Dame, Sydney, 2010, NSW
3 Cunningham Centre for Palliative Care, Darlinghurst, Sydney, 2010 NSW
Background: The majority of Australians living permanently in RACF’s are over 85 years, have one or more life threatening conditions, high levels of care needs and are likely to die within months of their admission. Calvary Health Care Kogarah (CHCK) provide a consultative palliative service to the Residential Aged Care Facilities (RACFs) in South Eastern Sydney Local Health District (SESLHD) and are aware that the service does not adequately meet their clients’ palliative care needs.
Aims: A scoping study was conducted over the period March – June 2016. The aim was to: a) identify gaps in the provision of RACF palliative care services; b) examine patterns of care and referral; c) explore the criteria used by RACFs to identify deteriorating residents; d) and explore general practitioner (GP) response to palliative needs. Methods: 60 RACFs were identified and interviews conducted with staff in 47 facilities (78%) either by phone or email.
Results: Preliminary data indicates that RACFs identified the main barriers to the provision of palliative care as the inability of Community Palliative Care Team to respond in a timely manner (n=19), a lack of knowledge of palliative care by GP’s and a reluctance by them to refer to Specialist Palliative Care services (SPCS) (n=18), and family reluctance to accept a palliative approach to care (n=14). Most facilities interviewed did not use a validated method of detecting the deteriorating client. Many had inaccurate concepts of a “palliative approach” or specialist palliative care. Most felt that “very few” of their residents were on a “palliative approach” although statistics show that ‘the majority of Australians living in RACF’s are likely to die within months of their admission.
Conclusions: These results suggest the need to transform clinical care of the elderly by improving palliative communication with and education of GP’s, staff and families. This will build capacity within facilities to manage palliative residents in an efficient and effective manner that has the dying person comfortable throughout the course of the dying process as well as limiting admissions to emergency departments and improving confidence in care for both clients and families.
Presenter Bio: Clare Backhouse is a Clinical Nurse Specialist in the Community Palliative Care Team at Calvary Health Care Kogarah. She has more than 20 years’ experience in all aspects of cancer nursing including more than 10 years in palliative care including clinical, education and management roles. She has a Master’s degree in the Professional Studies of Nursing and has recently completed a Graduate Diploma of Counselling. In her current role, she provides consultative support on clinical issues to RACFs liaising with the acute services/palliative care, GP’s families and RACFs.
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.
Implementing facilitated case conferencing for people living in aged care with advanced dementia – benefits, barriers and facilitators.
Prof Meera Agar,1,2,3 Dr Tim Luckett,1 Dr Georgina Luscombe,4 Prof Jane Phillips,1 Prof Elizabeth Beattie,5 Prof Dimity Pond,6 Prof Geoffrey Mitchell,7 Prof Patricia M Davidson,8 Ms Janet Cook,9 Ms Deborah Brooks,5 Dr Jennifer Houltram,9 A/Prof Stephen Goodall,9 Prof Lynnette Chenoweth10
Dr Tim Luckett, Faculty of Health | University of Technology Sydney, Level 7, 235 Jones St, Ultimo NSW 2007 (PO Box 123), T +61 2 9514 4861 E email@example.com
- Centre for Cardiovascular and Chronic Care, Faculty of Health, University of Technology Sydney (UTS), NSW, Australia
- South Western Sydney Clinical School, University of New South Wales, NSW, Australia
- Ingham Institute of Applied Medical Research, NSW, Australia
- Sydney Medical School, The University of Sydney, NSW, Australia
- School of Nursing, Queensland University of Technology, Queensland, Australia
- School of Medicine and Public Health, The University of Newcastle, NSW, Australia
- Faculty of Medicine and Biomedical Sciences, The University of Queensland, Queensland, Australia
- School of Nursing, Johns Hopkins University, Maryland, USA
- Centre for Health Economics and Research Evaluation (CHERE), Faculty of Business, UTS, NSW, Australia
- Centre for Healthy Brain Ageing, University of New South Wales, NSW, Australia
Methods: This study was a qualitative sub-study of a cluster randomized controlled trial called the IDEAL Project. In each of 10 intervention facilities, registered nurses worked as Palliative Care Planning Coordinators (PCPCs) two days a week for 18 months. They facilitated family case conferences and trained nursing home staff in person-centred palliative care. Perceptions of FCC as a “whole package” and the PCPC role in particular were evaluated using semi-structured interviews with PCPCs, facility staff and physicians. Analysis used a thematic framework approach with two researchers coding independently and then agreeing codes and themes.
Results: Interviews were conducted with 11 PCPCs, 18 nurses, 8 allied health staff and 3 physicians. Perceived benefits of FCC included better communication between staff and families, multi-disciplinary involvement in care planning, improved staff knowledge and attitudes, and improved palliative care resources. Barriers in various facilities included resistance from management, staff and GPs, time pressures and staffing levels, and PCPC/staff lack of confidence. Facilitators included positive family feedback and funded time and training for the PCPC role.
Conclusion: The success of FCC varied according to support from management and staff, and whether facilities had a culture of collaboration and quality improvement. The Australian aged care sector’s current policy environment and business model mean that, in most facilities, case conferencing is unlikely to receive the levels of nursing qualification, training and time needed to optimise benefits. Future studies should document resident and family perceptions of case conferencing, as consumer advocacy will be an important driver for improvement.
Presenter Bio: Dr Tim Luckett is a senior research fellow at the Centre for Cardiovascular and Chronic Care, UTS Faculty of Health. He is interested in developing and evaluating complex interventions for people with life-limiting illnesses and their families. Originally a speech and language pathologist, Tim has experience in both quantitative and qualitative research methods, especially outcome measurement and systematic reviews.
Transforming Clinical Care: One year of After Death Audits in a Residential Aged Care Facility (RAC).
Larissa B McIntyre FACN & Rita C Taylor RN
BaptistCare Orana Centre, 193-201 Brisbane Water Drive, Point Clare NSW 2250, (B) 4337 5425 (M) 0438 416 006, (e) firstname.lastname@example.org
AIM: Our facility was the pilot site for the trial the After Death Audit tool (1) for a 12-month period. This was an objective of the organisation’s Palliative Care Strategic Plan 2014. This enabled us to measure our end of life care delivery and to address any shortfalls identified by the audit.
BACKGROUND: BaptistCare has been providing aged care (residential & home based) & community services across NSW & ACT for more than 70 years. It currently operates 17 residential facilities with approximately 1800 beds.
Recognising that palliative care and end –of – life (EOL) care is core business for RAC; BaptistCare began to ask how palliative care services could be better delivered across all their RAC sites to ensure a consistent & high quality delivery of care in keeping with the evidenced – based approach of the Palliative Approach Toolkit (2012).
A multifaceted approach was taken to develop the strategy beginning with the identification of the principles of practice, research to inform the scope utilising current state & national documents, a comprehensive audit undertaken across all BaptistCare RAC. The BaptistCare Palliative Strategic Plan was released in 2014 and part of the plan included incorporating the After Death Tool into RAC clinical practice.
OUTCOME: At the time of writing, audits had been undertaken on all deaths in the facility. During this time the original audit tool was reviewed to include additional information to capture length of stay; as this has been identified to be significant change in residential care over the last 5 – years. Further information regarding the type of admission was also included to differentiate between Respite or Permanent; this data highlights those people who choose to use RAC for their EOL care as opposed to remaining in the acute care sector or dying in “their own home”. This data opens up the need for robust discussion for a Palliative Care payment for RAC.
REFERENCES: National Palliative Care Program. (2013). Residential Aged Care Pallaitive Aproach Toolkit. Queensland: The University of Queensland &, Blue Care Research & Practice Development Centre.
Larissa B McIntyre – I am an operational aged care manager. I have a passion for palliative care and advanced care planning. I strive to deliver care in a framework of safety, quality and dignity. I more than 27 years as a RN and have worked across multiple sectors including clinical, education & management roles.
Rita C Taylor – I am an operational aged care manager. I have a passion for providing person-centred care in an environment of continuous improvement & innovation. I have many years in aged care in a number of roles including clinical, education & management roles. I have previously worked in the disability sector in Australia & overseas.
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.
Ethical considerations of a longitudinal study of informal care networks across rural and remote NSW.
Dr Emily Saurman, Research Fellow-Rural Health; Broken Hill University Department of Rural Health, Corrindah Court PO BOX 457, Broken Hill NSW 2880; firstname.lastname@example.org 08 8080 1206.
Dr Emma Webster, Senior Lecturer Rural Research; School of Rural Health, Sydney Medical School, 11 Moran Dr, Dubbo NSW 2830; email@example.com 02 5809 9423.
A/Prof Megan Passey, Deputy Director Research; University Centre for Rural Health Lismore, 61 Uralba St, Lismore NSW 2480; firstname.lastname@example.org 02 6620 7516.
Prof David Lyle, Head of Department; Broken Hill University Department of Rural Health, Corrindah Court PO BOX 457, Broken Hill NSW 2880; email@example.com 08 8080 1200.
Background: The lack of suitable specialist Palliative and End of Life Care (PEoLC) services in many rural and remote communities already places an increased demand on informal carers and primary care services compared with their urban counterparts. Informal care networks are composed of healthcare providers and volunteers as well as a patient’s family and friends. They have become integral in providing care in rural and remote communities around Australia, but we do not yet know how these networks evolve, function, and respond to the escalating need for care and support for people with complex health problems nor how they impact the healthcare system. A longitudinal mixed method Project is being developed to examine rural and remote PEoLC informal care networks across rural and remote NSW during the progression of a life-limiting illness, through death, and into bereavement. This paper aims to review the ethical considerations of this study and the broader implications for palliative care research.
Methods: This is a synthesis of a review of published literature on palliative care research ethics and informed by project development discussions.
Key Findings: Conducting research with patients who are dying and their carers is privileged and demands sensitivities to produce the knowledge that will progress the provision of quality palliative and end of life care in the future. Matters of context, language choices, and even the timing of the research activity can be fraught with ethical concerns that inform our approach in order to minimise burden. Longitudinal research specifically is not a common design for palliative and end of life research. It brings an element of progression and continual contact with patients and carers requiring rigorous justification and trust beyond a standard research project. There are also ethical concerns relevant to responsibility and care of the researchers as they will develop relationships with the participants and possibly grieve as well. While there is evidence to support the conduct of palliative and end of life research as well as interest from palliative patients and carers to participate in research activity, there is still a necessary recognition that we are working within the context of dying which demands responsiveness and flexibility not often relevant in other fields of research.
Presenter Bio: Dr Saurman is a full-time Research Fellow-Rural Health with the Centre for Remote Health Research in the Broken Hill University Department of Rural Health. She has been a rural health researcher since 2008; trained in medical ethics, public health, and research methodologies. She has recently been conferred her PhD in rural health service research. Dr Saurman has published 14 journal articles, book chapters, and reports, 11 of these in the last 5 years.
Transforming the Palliative Approach in Rural Residential Aged Care Facilities
Dr Sarah Wenham, Specialist Palliative Care Physician, Far West Local Health District, PO Box 457, Broken Hill, NSW 2880
Rebecca Dalwood, Specialist Palliative Care Clinical Nurse Specialist, Broken Hill Health Service, Far West LHD, PO Box 457, Broken Hill, NSW 2880
Melissa Cumming, Director – Cancer Services, Innovation & Palliative Care, Far West Local Health District, PO Box 457, Broken Hill, NSW 2880
Elizabeth Perrie, Quality and Education Manager, Southern Cross Care Broken Hill, PO Box 695, Broken Hill, NSW 2880
Background: The National Aged Care Alliance (2012) recommends systematically creating good linkages between Specialist Palliative Care (SPC) and Residential Aged Care Facilities (RACF) to improve quality of palliative care provision and outcomes for individuals and families. A Decision Assist grant was used to enhance linkages between a rural SPC Team and three rural RACFs.
Approach: A systematic design and implementation included:
- Stakeholder engagement, planning meetings and mapping workshop with RACF, Primary Care and Hospital clinicians
- SPC Link-Nurse secondment to provide education, mentorship and ‘modelling’ of the palliative approach in RACFs
- Appointment of Palliative Approach Coordinators within each RACF
- Development of a suite of palliative approach clinical documentation
- Pre and post data collection to measure clinical and educational outcomes
Outcomes / Results: Improved palliative and end-of-life care for RACF residents was demonstrated by:
- Increased coordination of care
- Improved advance care planning
- Reduced unnecessary hospital admissions
- Increased residents dying in RACF
- More timely referrals to SPC for residents with complex needs
- Greater knowledge, skills and confidence of RACF staff and GPs to manage end-of-life care
Take Home Message: Sustainable improvements palliative and end-of-life care in RACFs can be achieved through embedding a systematic clinical approach, education, mentoring and enhancing linkages with SPC.
Presenter Bio: Dr Wenham is the Specialist Palliative Care Physician for the Far West LHD. She has been working as a Specialist Palliative Care clinician since 2002, as a Consultant in Palliative Medicine since 2010, in a rural and remote healthcare since 2012. She represents rural and remote palliative care on a number of state and national strategic committees, including with the NSW Ministry of Health, Agency of Clinical Innovation, Clinical Excellence Commission and Therapeutic Guidelines. She is currently involved in medical education and research supervision for junior doctors, medical students and other affiliated healthcare professionals through links with the University of Sydney, Department of Rural Health (Broken Hill). Dr Wenham has been involved with the development, implementation and evaluation of a number of clinical and research projects, including 8 since her move to Broken Hill 4 years ago. She has published 23 conference presentations, journal articles, book chapters and reports, with 14 of these in the last 5 years.
“The Good, the Bad and the Ugly” – how caring for my dying relatives changed me as a palliative care nurse.
Kathleen Wurth, Clinical Nurse Consultant – Palliative Care
Port Kembla Specialist Palliative Care Community Service, 80-91 Cowper Street Port Kembla, NSW 2505, firstname.lastname@example.org, 0412117180,
This presentation addresses the Conference theme of transforming care holistically as I outline caring for my dying parents in my home over a decade ago. My experience as a seasoned palliative care nurse caring for my own family members taught me more than any text book, university, or professional development course. It taught me about vulnerability, and what it is to face the death of my parents and other relatives. My parents chose to live with me and I had a dual perspective of being a daughter and clinician receiving “support” from formal services. Being on the receiving end of palliative care support services and hearing the “script” and the jarring lectures has given me pause and reflection to my own approach and practices. The intimacy of visiting dying patients in their own home is sacred territory. Entering family systems and relationships is profound and integral to impeccable care of the dying patient. Connection, communication and compassion are cornerstones to the human business of grieving and dying. This presentation will provide a narrative of my experience caring for my mum and dad as they came to the end of their respective illnesses and the interface with the palliative care service. Some of those experiences were patronising and judgemental and others were completely humbling and exquisite. These times influenced my bereavement, my memories and my career.
Presenter Bio: Kathleen Wurth is a community palliative care nurse consultant and has worked in a various settings and roles, including researcher, clinician, manager, end of life coordinator and educator. Her passion is in care of patients, families and staff during end of life phases. She describes herself as a “bedside nurse” and works to optimise compassionate and competent end of life care. Kathleen has a Research Master In Clinical Nursing (Palliative Care) which explored the meaning of photographs to palliative care patients and she is also a creative writer and wannabe film director. Kathleen is often heard saying “You only die once – lets get it right”. Kathleen brings an energy and passion in her care of the dying and is driven to support and collaborate with families and staff in providing good EOL care.