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 

To further explore its themes and applications, please join us for a webinar on:

Wednesday June 12th 2024, 1:00-2:00pm AEST  

This event is for healthcare providers, family members, support networks, and advocates committed to creating positive change in for those experiencing longstanding eating disorders. 

Registration for the webinar: Please register here to secure your spot for the webinar.  

We look forward to your participation and sharing insights and strategies to make a real difference. 

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.