Pre-Conference Workshops / Panels

Led by Danni Petkovic (Liminal Being), Jill Nash (Community Advocate and Volunteer, Ageing and Dying Well Advocate), Sally Douglas (Good Mourning), Richard Boele (Father, Bereaved Parent and Lived Experience Advocate) and John Milham (Men’s Wellbeing Advocate, Compassionate Connector, Men’s Coach, Suicide Prevention Trainer)

OVERVIEW / SUMMARY

AIHW figures show only 38% of older Australians received specialist palliative care in their last year of life, with first contact typically occurring just 12 days before death. In residential aged care, that figure drops to 18%. For younger Australians, Palliative Care Australia estimates between 5,000 and 10,000 people with advanced life-limiting illness fall between systems each year with no clear pathway to support. These numbers point to a gap that no single sector can close alone. Nor should they need to, we are, after all, social beings who live and die in community. This panel, conceived by mortality doula and death literacy educator Danni Petkovic and shaped collaboratively by its panellists, explores how community-based death literacy and grief literacy can work alongside specialist palliative care to extend its reach, strengthen its impact, and support the people and families who fall outside formal pathways. Drawing on the Compassionate Communities model, the session brings together lived experience, community education, and grief support to ask: what can community contribute to better palliative care outcomes, and what becomes possible when clinicians and communities work together? The panel is facilitated by Jill Nash (87), community advocate and volunteer, and includes a grief educator and co-founder of a recognised grief support community, a father whose two children died, one with and one without adequate palliative care support, a lived experience consultant and men’s wellbeing advocate, and a death literacy educator. Together they offer insight into how end-of-life experiences are shaped before, during, and long after clinical contact, and what becomes possible when communities and clinicians work together rather than in parallel.

WHAT WILL THE SESSION COVER

This session will explore the role of community-based death and grief literacy in supporting and strengthening palliative care outcomes. Drawing on lived experience and community practice, the panel will examine where people fall outside formal care pathways and what can fill that gap, what grief looks like long after clinical contact ends, and how death-literate communities can support dying people, their families, and the clinicians who care for them. The session is designed as a facilitated dialogue rather than a series of presentations, with structured audience participation throughout.

LEARNING OBJECTIVES

By the end of this session, participants will be able to:

• Explore how community and clinical expertise can work in active partnership rather than in parallel.
• Identify where community-based support can reach people who fall outside formal care pathways, including younger Australians and those in regional areas.
• Recognise what grief looks like long after clinical contact ends and consider how practitioners can respond beyond the bounds of formal care.
• Name one concrete shift in their own practice, communication, or community connection they can apply to their work.

Led by Palliative Care Australia

More details to come.

Led by David Pech (Council for Intellectual Disability)

People with intellectual disability frequently have worse experiences and decreased access, dignity and choice through palliative care, dying and grief. This workshop aims to build participants’ confidence, knowledge and skills to support people with intellectual disability. By attending this workshop, participants will:

• gain lived experience insights from a facilitator with intellectual disability
• learn about common experiences and needs of people with intellectual disability
• build confidence initiating conversations about palliative care, dying and grief with people with intellectual disability
• develop skills in inclusive and accessible communication
• strengthen understanding of supported decision-making for end-of-life matters
• identify ways to ensure care planning reflects the preferences and choices of people with intellectual disability.

The workshop makes use of:

• voices, real-life stories and views of people with intellectual disability about palliative care, dying and grief
• activities to explore person-centred practice
• opportunities for personal and professional reflection
• hands-on activities with tools and resources
• modelling of accessible communication.

The workshop has been co-designed with people with intellectual disability and subject matter experts, ensuring that the content is practical, accessible and grounded in lived experience.

Led by Una Turalic (Northern Sydney Local Health District & NSW Transcultural Mental Health Centre) and David Gillet (Nepean Blue Mountains Local Health District)

When communication is effective, people feel heard, understood and respected. When it breaks down, the consequences can be significant—particularly during palliative and end-of-life care. This engaging and interactive workshop explores how culturally responsive communication can improve care for Aboriginal and culturally and linguistically diverse (CALD) patients and their families. Participants will examine real-life case studies, explore common communication challenges, and develop practical strategies to support culturally safe, person-centred conversations. The session will provide practical skills in using plain language, teach-back, chunk and check, and working effectively with interpreters. Participants will also reflect on unconscious bias, cultural assumptions and the importance of building trust during emotionally complex conversations. Designed for multidisciplinary health professionals and volunteers, this workshop equips participants with practical tools they can immediately apply to improve communication, strengthen partnerships with patients and families, and deliver safer, more equitable palliative care.

Led by Mary Roberts, Dr Ester Klimkeit, Heather Stephenson, Dr Tracy Smith (Westmead Hospital), Associate Professor Tim Luckett, Muneeba Chaudhry (University of Technology Sydney IMPACCT [Centre for Improving Palliative, Aged and Chronic Care through Clinical Research and Translation]) and Bronwen Hewitt (Liverpool Hospital)

The clinical benefit of opioids and benzodiazepines for chronic breathlessness has been challenged by recent randomized clinical trials. The European Respiratory Society’s recent clinical practice guideline on symptom management for adults with serious respiratory illness recommended not to use opioids (conditional, very low certainty of evidence); and was unable to state if supplemental oxygen was of benefit in people who were non hypoxaemic given conflicting evidence. This workshop will present the evidence based strategies to help patients control their breathlessness and how to integrate them into your clinical practice. By the end of this workshop, participants will be able to:

• Describe the multifactorial causes of breathlessness and its impact on patients’ physical, psychological, and social wellbeing.
• Identify evidence-based assessment approaches for evaluating breathlessness across a range of clinical conditions.
• Apply non-pharmacological interventions shown to improve breathlessness, including breathing techniques, positioning, pacing, handheld fan use, exercise, and pulmonary rehabilitation principles.
• Recognise the role of anxiety, distress, and deconditioning in the experience of breathlessness and incorporate supportive management strategies.
• Develop person-centred management plans tailored to individual patient needs, goals, and preferences.