Background
People with longstanding eating disorders, and their loved ones and support networks, can face immense challenges. Existing care pathways often fall short of addressing their multifaceted needs. There is a critical need for more nuanced, compassionate, holistic care approaches.
With the support of the Commonwealth Department of Health and Aged Care, NEDC is pleased to introduce "Holding Hope—Exploring Compassionate & Holistic Care Pathways for Longstanding Eating Disorders". This discussion paper explores the multifaceted challenges and ethical complexities of palliative care for people experiencing longstanding eating disorders. It summarises and synthesises lived experience, research and clinical expertise to advocate for the development of palliative care guidelines for longstanding eating disorders.
Holding Hope addresses the complex landscape of longstanding eating disorders within the context of palliative care, emphasising compassionate care pathways (as distinct from end-of-life considerations or voluntary assisted dying). While recognising the ongoing discourse surrounding clinical characterisation of eating disorder stage and prognosis, this paper places its emphasis on advocating for compassionate care, primarily through palliative approaches, irrespective of prognosis. It is important to dispel the common misconception that palliative care is synonymous with end-of-life care. Rather, it embodies a comprehensive approach designed to enhance overall well-being and quality of life for individuals navigating the complex interface of physical and mental health challenges due to the impacts of longstanding eating disorders.
NEDC co-produced this paper with Shannon Calvert, a Lived Experience Educator with subject matter expertise, who led and guided its development and ensured the paper reflects the diverse perspectives and needs of the sector and community.
The Heart of This Document: Addressing a Critical Need
Holding Hope was created from a deep commitment to addressing unmet needs within the community. Standard evidence-based treatments are not effective for everyone at every stage of illness. For people experiencing longstanding eating disorders, a holistic, flexible, and personalised care approach that honours lived experiences and empowers individuals, families, and those who provide care is required.
Fostering Compassionate Dialogue
We acknowledge this topic's sensitivity and appreciate there are diverse perspectives. Our goal is not to stir debate but to ignite compassionate conversations focused on finding practical, empowering solutions. We stand firmly for every individual’s right at each stage of illness to receive treatment, prioritising dignity, respect, and person-centred care.
Holding Hope: Together
We believe everyone deserves a life of dignity, hope, and well-being. Holding Hope is an important step toward making this a reality.
Online launch webinar
The launch of Holding Hope was held on Wednesday June 12th 2024, 1:00-2:00pm AEST.
You can watch the recording by following this link to Vimeo.
Launch webinar - panelists
Shannon Calvert is a Lived Experience specialist with extensive experience in advisory roles within both government and non-government sectors. She has played a key role in facilitating lived experience partnerships to co-design policy development, research initiatives, and educational programs. Shannon's personal journey includes overcoming a severe and enduring eating disorder, while navigating complex trauma, and managing multiple health challenges. Her caregiving experience for her mother, who received palliative care until her end of life, also profoundly influenced her dedication to systemic reform to improve access to high-quality care and support, with a strong emphasis on the importance of providing compassion and dignity in treatment and care. Shannon works across several national organisations, specialising in Eating Disorders, Mental Health, Palliative Care, and Complex Systems.
Amaya Alvarez currently works as Manager Family and Carer Research at Tandem Carers. She brings to her work her lived experience across the generations - supporting a family member with an eating disorder, as well as experience supporting a sibling and a parent in AOD and mental health. In her work she is interested in how families are positioned as inside yet outside the MH service system, as well as the relational and whole of family impacts of supporting and living alongside a person experiencing an eating disorder that doesn’t fit transformative recovery narratives. She also works at Mental Health Carers Australia supporting the CEO, gaining insight into National issues of concern for families and carers and the major strategic and policy frames and levers required for meaningful change. Passionate about new and innovative ways to understand, amplify and find space for families and carers experience she is a founding member of FaCRAN the newly formed Family and Carer Research and Advocacy network. https://www.rmit.edu.au/research/our-research/enabling-impact-platforms/eip-networks/facran
Megan Bray is Accredited Practising Dietitian and Director of Collective Health Co, an interprofessional private practice on the Sunshine Coast for individuals experiencing eating disorders. Beyond her work with Collective Health Co Megan completing a Doctor of Philosophy (PhD) at the University of Queensland exploring how interprofessional outpatient teams can work together most effectively to support people experiencing an eating disorder. As someone with lived experience of eating disorder recovery, the voices of lived and living experience influence all aspects of her work.
Josh Fear is National Policy Director at Palliative Care Australia. He has worked at the intersection of policy, advocacy, health and economics in academia and in the non-government sector. Josh was Deputy Director at the National Centre for Social and Economic Modelling (NATSEM) at the University of Canberra, head of health partnerships at the Australian National University, Director of Policy at Mental Health Australia and Deputy Director of The Australia Institute.
Associate Professor Andrea Phillipou is a Principal Research Fellow in Eating Disorders at Orygen and The Centre for Youth Mental Health at The University of Melbourne. She is the Head of Eating Disorders Research and leads the Scientific Work in Anorexia Nervosa and Other Eating Disorders (SWAN) Research Group. Andrea's research is mainly focused on improving the lives of people with anorexia nervosa and other eating disorders by gaining a better understanding of the factors involved in their development and maintenance, developing tools for early intervention and prevention, and developing more effective treatments.
NEDC's Ongoing Commitment
This document represents a significant milestone in NEDC’s ongoing efforts to support and enhance the lives of those affected by eating disorders. We are committed to continuous learning and adapting, driven by compassion and the desire to implement practical solutions that address complex challenges. NEDC invites you to continue to work with us to enhance care pathways for people experiencing longstanding eating disorders. Together, we can make meaningful progress toward more compassionate and effective care.