Last Friday, 27th of May we ended our National Palliative Care Week, we all came together for Education Day. Our first face to face event since 2019 and the atmosphere reflected the joy of bringing us together again to learn more about Palliative Care.
Palliative Care NSW CEO, Linda Hansen, and President, Therese Smeal, opened the event. We were then fortunate enough to have knowledgeable and compassionate speakers such as Dr Frank Brennan AM, Joan Ryan OAM and Dr Craig Sinclair with us for the rest of the day.
Attendees came from all over NSW to explore the theme for the week “Palliative Care – It’s your right”.
The Day in Summary
Palliative Care: Human Rights and International Law
Dr Frank Brennan AM taught us about Human Rights and International Law. We learned that the International Law recognises the right to Health Care, therefore the right to Palliative Care. Organisations like the United Nation for example states …”Palliative Care needs greater attention…”; also the World Health Organisation (WHO) states the provision of Palliative Care is a “moral imperative of health systems and it should be integrated into all levels of health care”. In the UK a Bill was recently introduced that acknowledges the Government has an obligation to provide Palliative Care.
Countries that have health policy relating to equity and accessibility must extend these services to include Palliative Care.
The ‘I am living’ Campaign
We also had the beautiful opportunity to learn from the ‘I am living’ Campaign created by Joan Ryan OAM and Dr Frank Brennan AM.
As part of this section of the day, Joan and Dr Brennan shared real life stories of people with advanced life-limiting disease and their choice to live an empowered and dignified life, as defined by themselves, their families, and carers.
Creative Joff Chappel, lovable Rose Cox and caring Barry Gallagher were the stories shared during the presentation that left us with a great insights about their needs at this stage of their lives and lessons about life itself! These were courageous, generous, and honest stories that can give us a real perspective about the benefits of Palliative care for them, their families and carers.
Watch these stories and many more here: https://www.iamliving.org.au/stories/
Life Story Work and its benefit for Advance Care Planning – The EARLI Project
Dr Craig Sinclair spoke to us about how important and useful is to incorporate the life story of older adults when making plans for end of life according to their needs, values and beliefs.
“We need to understand their values and stories that brought them to their situation” “Right is best understood holistically” he said.
He highlighted that the work of Advance Care Planning happens during the core of serious and chronic illness rather that at the end of life, hence the importance of starting early and taking the whole trajectory into account to deliver the best Palliative Care possible.
Dr Craig shared statistics about Advance Care Planning in Australians, such numbers mean many people face ‘crisis’ medical situations without any previous discussions or plans, and substitute decision-makers are often burdened with uncertainty and distress at the time of having to make a decision for their loved ones.
Based on the statistics and other factors such as rapid growth of the ‘home care’ sector, ageing population, cultural diversity and the need for earlier opportunities to engage with advance care planning the EARLI Project was developed.
The Enhanced Advance Care planning and life Review Longitudinal Intervention Project (The EARLI Project) aims to adapt and tailor a combined ‘life story and advance care planning intervention’ for older adults receiving home care services in Australia. It is a fantastic initiative funded by the NHMRC from 2022 to 2026. It involves health economics evaluations and training for aged care providers in delivering the project intervention.
There are positions vacant to contribute to the successful delivery of this project, if interested please go to our job section to know more: https://palliativecarensw.org.au/health-professionals/jobs-in-palliative-care/
EARLI will be soon delivering more news including a survey for older adults (65yrs+) to pilot and validate the study measures. Stay tuned to our news as we will supporting this program.
In the meantime, if you want to read more about this, please go to https://newsroom.unsw.edu.au/news/science-tech/nhmrc-funding-supports-end-life-planning
Palliative Care and Homelessness
Joan Ryan OAM closed the event with an ‘eye opening’ talk about Palliative Care and Homelessness.
Discussions were opened about the challenges homeless people have when accessing Palliative Care. Lack of access to proper care, medical history, cultural assumptions of homelessness causes (drugs, alcohol, etc) were discussed in the context of palliative care. Joan brought the attention to real statistics vs what is culturally assumed and inspired everyone in the room to get to know these vulnerable patients, to be compassionate towards them and to really consider existential needs as well as medical needs to provide appropriate care.
The room split into group discussions to address some questions from Joan, then came together to share experiences, reflexions, and ideas that they can carry forward in their professional lives.
If you are interested in knowing more about this topic, feel free to get in touch with megan@palliativecarensw.org.au and follow our member eNews. In the coming weeks PCNSW will release a report that is currently being finalised by Emma Scott-Stevenson and Megan Burke on initial findings from a Sydney Metropolitan based research project on Homelessness and Palliative Care. PCNSW hopes to extend this research to include regional areas of NSW later in 2022.
More to come about this day in our Pallium Winter Edition! Stay tuned
Presenters brief Bio:
and PCNSW, President Therese Smeal
and PCNSW CEO Linda Hansen
and PCNSW CEO Linda Hansen
Dr Frank Brennan AM began his career in medicine, working in both Sydney and South Africa, before he decided to study law, while continuing to practice medicine. He embarked on a brief legal career before returning to medicine as a GP at the Aboriginal Medical Service in Redfern. Three years later he decided to explore his growing interest in palliative care. Dr Brennan divides his time between two roles – renal-palliative care physician with the Renal Supportive Care service at St George and Sutherland hospitals, and palliative care physician and medical officer at Calvary Hospital, where he treats mainly Motor Neurone Disease and cancer patients.
Joan Ryan OAM is the recipient of the Order of Australia in 2019 for her significant contribution to palliative care nursing. Joan has vast experience in palliative care specialist nursing within the acute, community and in-patient setting. She is also known as an advocate for better palliative care locally and internationally and generously contributes to national media including radio and television events such as Radio National and television interviews/panel discussions. She has been a Member of the Management Committee of Palliative Care NSW for more than 10 years.
Dr Craig Sinclair is a postdoctoral research fellow in the Centre of Excellence in Population Ageing Research, based at the University of New South Wales. His training is in psychology, and his key research interests include older adult decision-making, advance care planning and supported decision-making.
