Palliative Care Research at The University of Notre Dame Australia, The Cunningham Centre for Palliative Care Research at St Vincent’s Sydney and Cabrini Health in Melbourne
Updated November 2019
The context of palliative care research
The need for advocacy, research, collaboration and teaching in the field of Palliative Medicine is now greater than ever and will only increase as we enter the next decade.
The use of palliative care services is rising in Australia (Statistics from the Australian Institute of Health and Welfare). Currently;
- 62,000 hospitalisations were palliative care related in 2013-2014 : an 11% increase from 2009-2010.
- 44% of patients who died as an admitted patient used palliative care.
- There has been a 79% increase in Medicare benefits paid on palliative medicine specialist services from 2010-2011 to 2014-2015.
86% of people express a wish to die at home while nationally only 27% actually do. However, individual community palliative care services do better, with Eastern Palliative Care in Victoria identifying that 72% of their clients die in the place of their choice, and 46% die at home. Australia can gradually improve patients achieving this goal where it is desired.
This context is what motivates a Catholic university to be influential through its research and to engage with teaching good palliative care practice. Our studies are directly responsive to this climate of assisted suicide.
A vital educational agenda is essential to promote understanding that palliative care is separate from voluntary assisted dying and focused firmly on optimising the quality of living, even towards the end of life.
As Chair of Palliative Care Research, I provide a voice about the most vulnerable members of our community not only today but with impact on those who will make end-of-life decisions in the years to come.
I have made submissions to parliamentary inquiries into End-of-Life Choices, including in Victoria, Queensland, Western Australia and South Australia in recent times. Face-to-face presentations have been made to the Victorian and South Australian inquiries and members of the Queensland inquiry. Talks have been delivered directly to parliamentarians in the lead-up debates on legislation, specifically to members of both the Victorian and Western Australian parliaments at closed sessions within each parliamentary house. For example, in WA, the parliamentarians convened a Friends of Palliative Care Committee, which has hosted monthly lectures across twelve months, and saw some 40 parliamentarians come to my lecture.
Individual face-to-face meetings have been convened with parliamentarians identified as unsure of their position in the lead up to any parliamentary vote.
Despite the challenges of editorial policy operating across many media outlets, support through organisation such as HOPE and The Care Alliance have assisted in public education. Radio interviews have been given with the ABC and other local media outlets, with several palliative care professionals affiliated with UNDA taking up the voice when given that chance.
In Sydney, work has occurred with Catholic Care to recognise the poor community understanding of what palliative care does, how Catholic parishes might contribute to building Communities of Compassionate Care, and then a proposal led by the CEO of Catholic Care, Mark Phillips, has been presented to the Archdiocesan Curia for planning of a wider roll-out.
Our research studies
The focus of the research has investigated existential and spiritual distress, demoralisation and the desire to die, and how to treat such states with meaning-centred interventions.
Studies of demoralization: This is a state of lowered morale and poor coping with medical illness, which leads patients to query the very point of life. We have established a clinical measure of demoralisation in palliative care and begun the study of a diagnostic interview to compliment this scale. Notre Dame medical students undertaking their MD projects will engage in these studies with specific patient groups, increasing their familiarity and expertise with existential distress.
Trial of Meaning and Purpose Therapy: After a successful pilot of this meaning-centred intervention, we have started a randomised, controlled trial. Funding has been obtained from the Cabrini Foundation in Melbourne and from the Curran Foundation at St Vincent’s Sydney to support the conduct of this trial. This psychotherapy is a potential treatment for the demoralised to help them sustain purpose and fulfilment from life.
Studies of spiritual distress: Collaboration between Cabrini and Sacred Heart has seen both qualitative and quantitative studies commenced to examine and better define this problem, including the validation of a spiritual concerns checklist.
Video information Aid: Our first PhD student in palliative medicine at Notre Dame is studying the contribution of a video information aide to the completion of an advance care plan by patients in a palliative care setting, with a particular focus on the patient’s expression of values to their health care proxy.
Study of Chronic Breathlessness: Our second PhD student will study patients with respiratory disease who develop refractory breathlessness, examining both unmet needs and ways beyond medication of allied health services to help alleviate this breathlessness.
Study of Non-malignant pain in palliative care: Our third PhD student will study patients in the palliative care setting whose pain is due to chronic arthritic and other conditions apart from cancer, to better define how this is optimally managed.
Study of heart-lung failure: Our fourth PhD student will examine the unmet needs of patients with advanced heart failure who may not succeed in achieving a heart transplant.
Welcome to Associate Professor Annmarie Hosie, Professor of Palliative Care Nursing. The University of Notre Dame Australia has been delighted to appoint an academic nurse to compliment the Chair of Palliative Care Research and to bring the force of the multidisciplinary team to the research that is undertaken by this research team.
A/Prof Hosie has a particular interest in the study of delirium, a state of confusion that commonly occurs towards the end of life and can cause much distress to relatives who observe the delirious patient. There are a number of non-pharmacological interventions that can be delivered to these patients to enhance their wellbeing and orientation.
We anticipate Nursing PhD students to further enrich the strengths of our program.
Collaboration across Catholic health care providers
I take a lead role in the development of collaborations with other Catholic health care providers of palliative care. This helps to build solidarity in the provision of optimal palliative care and provides for mutual benefit and improved results all-round.
Our key collaborators are:
The Sacred Heart Hospital at St Vincent’s Sydney, working together with palliative care physicians who are Prof Richard Chye, Dr Davinia Seah, & Dr Christopher Pene.
Prof Richard Chye is the Adjunct Professor of Palliative Medicine at Notre Dame, and leads research into the use of vaporised cannabis. Dr Davinia Seah is the adjunct senior lecturer at Notre Dame and has worked on and assisted with spirituality studies.
Dr Christopher Pene coordinates the teaching of Notre Dame medical students in palliative medicine at Sacred Heart Hospital.
Cabrini Health, Melbourne, working with Associate Professor Natasha Michael, Dr Merlina Sulistio, and Dr Tim Hucker. Our qualitative health expert is Associate Prof Clare O’Callaghan.
A/Prof Natasha Michael is Head of Palliative Care in Dept of Medicine, Notre Dame in Sydney and Werribee. She is engaged with Spirituality and Advance Care Planning research.
A/Prof Clare O’Callaghan is an adjunct of Notre Dame’s Institute for Ethics and Society and is involved with our spirituality research.
The Cabrini Foundation has awarded grant support for our Meaning and Purpose Therapy intervention trial and studies of a structured interview to diagnose the state of demoralization.
St John of God Hospital in Perth, where I work with Dr Alison White at St John of God Murdoch Hospital, and Dr Derek Eng, Head of Palliative Care at St John of God Subiaco Hospital.
Dr Eng is a senior lecturer in palliative medicine at Notre Dame in Fremantle. Together, Dr White and Dr Eng are collaborating with our demoralization studies.
Calvary Health Care Kogarah where Professor Liz Lobb leads behavioural health research into coping, caregiving and bereavement. Calvary Health have an extensive network of palliative care services in Adelaide, Canberra, Melbourne and Sydney, all of whom can be worked with collaboratively to strengthen our research network.
Calvary Health in Melbourne has provided grant support for our validation of a diagnostic interview for demoralization through its Bethlehem Griffiths Foundation.
Dr Ekavi Georgousopoulou, University of Notre Dame, assists with the statistical analysis of the spiritual distress study.
Notre Dame medical students are actively taught palliative medicine both in Sydney and Fremantle. This is a vital component of the development of the discipline and we are fortunate to have a very dedicated team of educators for our students.
Key teaching sites and their lead educators are:
- Sacred Heart, Sydney – Dr Christopher Pene
- Cabrini Health, Melbourne – A/Prof Natasha Michael & Dr Merlina Sulistio
- Calvary Health, Bethlehem, Melbourne – Drs Rohan Ahern, Fiona Runacus & Scott King
- Fremantle Perth – Dr Alison Parr, Dr Alison White, & Dr Dennis Eng.
The challenge ahead
Future Plans for the Centre in Palliative Medicine (our strategic and operational goals). Strategic, long term plans encompass expanding the research program, with more PhD students, and eventually post-docs.
David W Kissane, AC, MD, BS, MPM, FRANZCP, FAChPM, FACLP
Chair in Palliative Care Research