A progress report from the Chair

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

June 2019

Since my appointment as Chair of Palliative Care Research, an initial focus of research has been established on existential and spiritual distress, demoralization and the desire to die, and how to treat such states with meaning-centred interventions.

The context of our palliative care research consortium

We live in a global world where medical assistance in dying is on the rise, with exponential rises in euthanasia being seen in Canada, and physician-assisted suicide being delivered increasingly to the mentally ill in the Netherlands and Belgium. Politicians are responding to the persistent advocacy of euthanasia societies to introduce voluntary assisted dying in Australia, the Andrews’ Labor Government of Victoria being the first to introduce this practice. Western Australia and Queensland are positioning themselves to consider comparable legislation. A number of organisations (like Hope and the Australian Care Alliance) exist to both fight this battle and keep restrictions on the extent to which this practice can develop.

We have been active in making written submissions to the Inquiries held in Victoria, Western Australia, the Australian Capital Territory and Queensland. Nevertheless, considerable momentum has developed in some parties who have been battling The Australian Greens and seek to reduce the perceived differences between their platforms. Death is feared in all societies; it is relatively unfamiliar in modern life; and the community call for control over dying whenever the thought of an ugly death is presented in the media. 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.

This context is what motivates a Catholic university to be influential through its research and engage with teaching good palliative care practice. Our studies are directly responsive to this climate of assisted suicide.

Our research studies

Firstly, our 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 demoralization in palliative care, and begun the study of a diagnostic interview to compliment this scale. Notre Dame medical students undertaking their MD project will engage in these studies with specific patient groups, increasing their familiarity and expertise with existential distress.

Secondly, our trial of Meaning and Purpose Therapy: After a successful pilot of this meaning-centred intervention, we have started a randomised controlled trial. This psychotherapy is a potential treatment for the demoralized to help them sustain purpose and fulfilment from life.

Thirdly, our 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.

First PhD student:

Our first PhD student in palliative medicine at Notre Dame is studying the contribution of a video information aide to the completion of an advanced 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.

A clear goal is to identify further PhD students as these become the researchers of the future and are crucial to succession planning.

Collaboration across Catholic health care providers

Benefit is gained through the development of collaborations with other Catholic Health Care Providers of palliative care. This helps recruitment to studies, but also builds solidarity in the provision of optimal palliative care.

Our key collaborators are:

  1. Sacred Heart Hospital at St Vincent’s Sydney: Key palliative care physicians are Prof Richard Chye, Dr Davinia Seah, & Dr Christopher Pene.
    • Prof Richard Chye is Adjunct Prof of Medicine at Notre Dame, together with UTS and UNSW. He leads research into the use of vaporised cannabis.
    • Dr Davinia Seah is adjunct senior lecturer at Notre Dame and has helped with spirituality studies.
  2. Cabrini Health, Melbourne: Key palliative care physicians are Assoc Prof Natasha Michael, Dr Merlina Sulistio, & Dr Chris Grossman. Our qualitative health expert is Assoc Prof Clare O’Callaghan.
    • A/Prof Natasha Michael is Head of Palliative Care in Dept of Medicine, Notre Dame in Sydney & 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.
  3. St John of God Hospital in Perth: 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, Drs White and Eng are collaborating with our demoralization studies.
  4. Calvary Health Care Kogarah: Prof Liz Lobb is Professor of Palliative Care (Allied Health) and leads behavioural health research into coping, caregiving and bereavement.
    • Prof Liz Lobb is Adjunct Professor in Dept of Medicine at Notre Dame, Sydney. She has recently been publishing coping in bereavement research.
    • Calvary Health in Melbourne has provided grant support for our validation of a diagnostic interview for demoralization through its Bethlehem Griffiths Foundation.
  5. Our statistical support comes from the University of Notre Dame in the person of Dr Ekavi  Georgousopoulou PhD, who has been most helpful in our current analysis of the spiritual distress study.

Teaching

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, Drs Chris Grossman & Merlina Sulistio
  • Calvary Health, Bethlehem, Melbourne – Drs Rohan Ahern, Fiona Runacus & Scott King
  • Fremantle Perth – Dr Alison Parr

The challenge ahead

We seek to identify a lead palliative care nursing academic to complement this emerging medical group of researchers.

Our goal is to build in parallel a strong academic program of research and group of early career researchers who will provide continuity into the future. Identifying more PhD students is an early priority.

The successful candidate will play a major role in leading research and developing research capacity in the School of Nursing and St Vincent’s Hospital, by leading research projects and supervising candidates for higher degrees by research.

With thanks

Time has flown by since I began my appointment. I am heartened by the welcome and hospitality that has been provided to me by the Dean of the School of Medicine Sydney, Professor Christine Bennett AO, and all in our Medical Schools. There is great enthusiasm at Notre Dame to successfully grow this academic program. I am very grateful for the support extended to me.

I am also grateful to the many donors who have made the Chair in Palliative Care Research possible thus far. They have joined our vision for the importance of palliative care research for our community and have blessed us with this opportunity. I assure them, and all, of my commitment to grow a stellar program that builds scholarship in palliative care and enhances the discipline.

David W Kissane, AC, MD, BS, MPM, FRANZCP, FAChPM, FACLP
Chair in Palliative Care Research