Heart failure affects about 1-2% of the general adult population, with symptoms occurring during minimal exercise or at rest. People with advanced heart failure have a risk of premature death. Globally, stroke is the second leading cause of death, with one-fifth of people dying within the first 30 days following a stroke.
Cardiovascular Disease and Stroke Hub
Our purpose
The PaCCSC Cardiovascular Disease and Stroke Hub has been established to generate evidence to shift our thinking and transform our understanding of the unique palliative care service needs in cardiovascular disease and stroke.
The problem
Palliative care is recommended to address the needs and improve the quality of life of people with life-limiting illnesses such as heart failure and stroke.
While palliative care is suitable and recommended alongside the treatment of people with heart disease and stroke, it is not always integrated into their care.
This is explained by various factors including:
- patient and family perspectives
- an unpredictable disease trajectory with periods of stability and progressive decline
- a lack of knowledge about palliative care, and
- system-level issues including resources.
The challenge
Palliative care is applicable for all people with incurable diseases, including heart disease and stroke, and at all stages of disease progression, not just at the end of life. People with heart disease and stroke are not always provided with access to palliative care alongside their usual care.
The goal
Our goal is to prevent unwanted hospitalisations and allow Australians with end-stage heart disease and stroke to spend more days in their place of choice before they die.
Conference posters
improving recognition and response to palliative care needs in a specialist heart failure clinic (pdf, 4014kb)
Hub team
Professor Louise Hickman, Hub Chair
Professor Louise Hickman joined the University of Wollongong (UOW) in March 2022 as Pro Vice-Chancellor (Health) from UTS where she is currently in an interdisciplinary role as Director of Palliative Care Programs, responsible for improving palliative, aged and chronic care through clinical research and translation (IMPACCT).
Louise is a registered nurse clinician-scientist who holds a Master in Public Health and an implementation science PhD in models to improve care of the older person. She has a sustained funded research program which builds upon the crucial urgency to address unmet chronic health care needs in our ageing and palliative populations focusing on improving care of vulnerable, frail older populations, cardiovascular disease (CVD), chronic disease, cognitive decline, dementia, aged palliative care to improve access to care. This program moves care from a traditional acute episodic care model of treating one patient, one disease, to a person-centred, culturally safe care continuum model across care settings.
Louise has authored more than 100 publications including international engagement with 228 co-authors across 14 countries. At UTS, Louise was the Director of Palliative Care Studies where her in-depth knowledge of the healthcare industry and significant understanding of pedagogy and research in the real-world setting enabled her to redesign educational opportunities to better address the needs of patients, clinicians and students in contemporary healthcare organisations across and within sectors.
Louise has held and holds leadership positions in several peak professional associations; National Advisory Group Palliative Care Education and Training Collaborative; the Joanna Briggs Institute, Cardiovascular Expert Reference group; Cardiac Society of Australia and New Zealand Education Committee; past executive Palliative Care Nurses Australia; elected committee member of the Xi Omicron Chapter at Large Sydney STTI International.
Professor Meera Agar
Professor Meera Agar is a palliative medicine physician with particular interests in delirium, supportive care needs of people with brain tumours and geriatric oncology. Meera leads a clinical research portfolio at UTS, including clinical trials and health services evaluation in cancer and palliative care. She led a world-first clinical trial of antipsychotics in delirium and is leading New South Wales Government-funded clinical trials of medicinal cannabis for anorexia in people with advanced cancer. A Fellow of the Royal Australasian College of Physicians, Fellow of the Australasian Chapter of Palliative Medicine, and a clinician scientist, she holders a Masters in Palliative Care. Her doctorate was awarded in the area of delirium in advanced illness.
Meera’s research and teaching have won numerous awards, including an Australian Learning and Teaching Council (ALTC) Citation, an Australian Award for University Teaching, European Associate for Palliative Care (EAPC) Early Career Researcher Award and Dean’s Academic Excellence Award for Research Excellence. In 2019, she was also awarded the National Palliative Care Award for Outstanding Teamwork for her role in the Palliative Care Home Support Packages (PEACH) Program Care Team at South Western Sydney Local Health District.
Meera is Chair of the ImPaCCT:NSW Management Advisory Committee and the Chair of Cancer Symptom Trials (CST). She is on the scientific committees of the Cooperative Trials Group for Neuro-oncology (COGNO), the Psycho-oncology Cooperative Research Group (PoCoG)and the National Health and Medical Research Centre (NHMRC) Cognitive Decline Partnership Centre. She is a Board Member of the European Delirium Association, committee member of the Australasian Delirium Association, on the Clinical Advisory Group for NPS MedicineWise, Chair of the Geriatric Oncology Group for the Clinical Oncological Society of Australia. a member of the Australian Advisory Council on the Medicinal Use of Cannabis and TGA Opioid Regulatory Advisory Group. She is the immediate past President of the Australian and New Zealand Society (ANZSPM) for Palliative Medicine. In December 2019, Meera was appointed as Chair of the Palliative Care Australia Board. In December 2020, she was appointed as Director of IMPACCT.
Dr Peter Allcroft
Dr Alison Bowers
Dr Alison Bowers is a Research Fellow in Palliative Care at the Cancer and Palliative Care Outcomes Centre at the School of Nursing, Queensland University of Technology(QUT).
Alison is a registered nurse in Australian and maintains her registration as a UK paediatric nurse. Alison completed her PhD with Queensland University of Technology, in the area of planning for paediatric palliative care in Queensland. She also holds a Bachelor of Nursing (Child) (Bangor) and Master of Clinical Research (Manchester). Alison has an interest in clinical trials, data linkage and health services research.
Alison’s research focuses on identifying palliative care need and generating data to inform health service planning for palliative care services. Alison contributed to the revision of the Queensland Palliative Care Services Planning Guideline, as part of the methods working group. Her expertise has also contributed to the activities associated with the Palliative Care Australia and PaPCANZ Paediatric Palliative Care National Action Plan.
Alison is a member of the Australian College of Nursing, Palliative Care Nurses Australia, Palliative Care Queensland and the Royal College of Nursing (UK).
Alison is also a Director for the Australian College of Children and Young People’s Nurses and a member of the Queensland Paediatric Palliative Care Working Group. Alison also actively contributes to steering groups relating to the Paediatric Palliative Care National Action Plan.
Alison has published in peer-reviewed journals and presented at conference nationally and internationally. She is currently an Associate Supervisor for a HDR student.
Felicity Bright
Dr Felicity Bright is a Senior Lecturer in Rehabilitation at the Auckland University of Technology. She is a registered speech-language therapist and much of her research focuses on services for people experiencing communication impairments following stroke.
An experienced qualitative researcher who teaches research methodologies in postgraduate programs and, Felicity uses a variety of qualitative approaches in her work. She is a research lead within the Centre for Person-Centred Research where her work focuses on psychosocial well-being, patient experiences of care, and health professional practices within health and rehabilitation services.
Felicity leads a Health Research Council-funded project on Psychosocial well-being after stroke. The role of the project is to examine how wellbeing is supported by clinicians, services, and broader health structures. This work extends her previous research in the areas of hope, future-focused interactions in stroke care, and wellbeing in other neurological conditions.
Felicity is interested in exploring the relationships between palliative care and stroke care. This includes considering how stroke services could learn from palliative care in order to better support psychosocial wellbeing, and examining how palliative care is currently provided for people after stroke.
Felicity also leads a national working group tasked with developing guidelines for addressing psychosocial wellbeing after stroke. The working group partners with clinicians and service providers throughout New Zealand to provide professional development and support service development initiatives.
John Clements
John is a consumer representative whose first exposure to the concept of palliative care occurred back in 2016 when his late wife reached the end stage of her illness with pancreatic cancer. His knowledge of what palliative care was and what it was designed to do was minimal at that time, but his knowledge of the subject gradually increased as events unfolded.
Since then, he has become involved in a number of different activities in and around the palliative care space, serving on numerous committees and consumer groups with a range of institutions. These include a major Melbourne hospital, Safer Care Victoria, Palliative Care Australia, Palliative Care Victoria, and a group of palliative care/research bodies based at the University of Technology in Sydney (UTS).
These activities together with involvement with other institutions covering the areas of medical research, clinical trials and voluntary assisted dying have resulted in giving him access to a range of activities and an insight of a range of medical areas.
Associate Professor Caleb Ferguson
Associate Professor Caleb Ferguson RN PhD is a Principal Research Fellow and Associate Head of School (Research) at the University of Wollongong, NSW, Australia. Caleb is an NHMRC Emerging Leadership Fellow and leads a program of clinical research in stroke prevention, cardiovascular disease, frailty science, and digital health. He has expertise in translational research methods and implementation science.
He has published over 100 academic works and received over $9m as a chief investigator in competitive research funding, including NHMRC, MRFF, and the Heart Foundation. He is a registered nurse and holds an appointment with Western Sydney Local Health District, and adjunct academic appointments at Western Sydney University, the University of Technology Sydney and Queensland University of Technology.
Caleb is a Fellow of the Australian College of Nursing, European Society of Cardiology, and Cardiac Society of Australia & New Zealand. He serves as Editor for Heart, Lung & Circulation and the European Journal of Cardiovascular Nursing, as Deputy Director of Implementation Science and Nursing & Midwifery Academy for SPHERE, a Sydney-based Advanced Health & Research Translation Centre, and is a member of the Research Advisory Committee for the Stroke Foundation.
Brian Fernandes
Dr Michelle Gold
Dr Michelle Gold is a palliative care physician and Director of Palliative Care at Alfred Health. She has broad experience caring for patients with malignant and non-malignant diseases, including burns, respiratory disease and trauma.
Michelle oversees a team of specialist nurses, allied health and medical and staff, including junior doctors. Michelle is part of the Improving End of Life Care Committee and the Voluntary Assisted Dying Working Group.
In her teaching roles at both Alfred Health and Monash University, Michelle mentors junior medical staff and participates in research. She has spoken widely to community groups on topics related to palliative care and voluntary assisted dying.
Michelle is currently President-Elect of the Chapter of Palliative, Medicine, RACP and chairs the Spirituality Training Working Party.
Natalie Govind
Natalie Govind is a lecturer in the Faculty of Health at UTS. She has extensive experience in critical care nursing as well as recent experience in palliative care nursing. Her clinical research includes experience with clinical trials as a clinical nurse specialist 2 (Research) and Stroke telehealth.
Natalie’s publications include book chapters and peer-reviewed journal articles with citations in Lancet, British Medical Journal, Medical Journal of Australia, and Nature Reviews. She has also presented her research at national and international professional conferences.
A dual medal recipient, Natalie has received an Academic Staff Excellence Awards as well as Citations for teaching. She has experience in the design, implementation, and evaluation of educational programs and educational platforms both in both clinical and academic environments.
Health simulation has been an important aspect of Natalie’s academic career. She was an investigator in studies that focused on the care of people post-stroke. They investigated whether simulation could change nursing students’ empathy scores. These studies have been cited over 30 times, informed two systematic reviews, and have influenced health professional empathy education.
Natalie received a NHMRC postgraduate scholarship (2021) to continue her study Improving palliative care for people after acute stroke.
Professor Sally Inglis
Professor Sally Inglis is a Heart Foundation Future Leader Fellow and is an academic cardiovascular nurse research leader in the management of cardiovascular disease, especially heart failure. She is a global leader in the evidence to support the use of telehealth (structured telephone support and telemonitoring) for people with chronic cardiovascular disease, including advanced heart failure.
Sally’s research focuses on the role and evidence for health technology to improve access to specialist cardiovascular care, especially for people who live in rural and remote areas. She is passionate about women's cardiovascular health and supporting people with multiple chronic conditions in the context of cardiovascular disease and risk.
Sally is Chair of the Cardiovascular Nursing Council of the Cardiac Society of Australia and New Zealand (CSANZ) and Deputy Chair of the NSW Cardiovascular Research Network.
Dr Valentina Naumovski
Dr Tina Naumovski is a researcher in the fields of pharmaceutical sciences and pharmacology, with expertise in complementary medicines. She is one of very few researchers in the world with a multidisciplinary approach spanning the cultivation and preparation, analytical (isolating and identifying compounds), pharmacological (mechanism of action, drug interactions, pharmacokinetics) and clinical research of plant material.
Tina provides organisational leadership as the program coordinator/associate investigator of clinical trials using medicinal cannabis for anorexia in advanced cancer. She is the inaugural Chair of the Appetite and Cachexia Symptom Node Subcommittee tasked with mapping a program of work to improve anorexia cachexia syndrome, thus making her research career truly original and translational. She is based at the School of Medicine, University of New South Wales, and is a sessional lecturer/adjunct at Western Sydney University as well as an honorary IMPACCT fellow.
Andrew Ng
Prasun P
Dr. Prasun is a specialist palliative medicine senior registrar at Tata Memorial Hospital, Mumbai, India and is the resident in charge of Paediatric Palliative Care in TMH, Mumbai. He is an enthusiastic and aspiring beginner in the field of research and academically focused on delivering healthcare excellence. His areas of special interest are neuro-palliative care, cancer pain and paediatric palliative care.
Prasun has been faculty and mentor for various palliative care training programs in India. He undertook his Bachelor of Medicine and Surgery at Mahatma Gandhi Memorial medical college, Indore and his M.D in Palliative Medicine from Tata Memorial Hospital, Mumbai.
Prasun has received various awards and gold medals during his training. His ongoing research works are on sublingual buprenorphine and low dose non-scheduled bolus ketamine for breakthrough cancer pain and cancer pain crisis respectively. Having undergone his majority of training from an oncology institute, he is excited to work for and learn more about CVD and stroke.
Dr Lisa Pont
Dr Lisa Pont is a registered pharmacist and Professor in the Discipline of Pharmacy, Graduate School of Health at the University of Technology Sydney. She has a PhD in Clinical Pharmacology on Quality Use of Medicines from the University of Groningen in The Netherlands where she explored the development and validation of prescribing indicators for measuring quality of prescribing in general practice.
Dr Meg Sands
Dr Stephanie Schwetlik
Dr Stephanie Schwetlik is a Palliative Care Specialist with the Northern Adelaide Palliative Service. She completed her medical degree at the University of Adelaide and is a Fellow of the Royal Australasian College of Physicians and Australasian Chapter of Palliative Medicine. She holds an honorary Clinical Lecturer title with the University of Melbourne.
During her Research Fellowship at St Vincent's Hospital Melbourne, Stephanie’s research developed a tool to support cardiology doctors and nurses to recognise potential need for palliative care in their patients and guide them through a patient-centred response. She contributed to the development of the Heart Failure Supportive Care Service, leading establishment of the Heart Failure Multidisciplinary Meeting, and working clinically within the heart failure clinic. In South Australia, Stephanie led the establishment of the Northern Adelaide Local Health Network End-Stage Heart Failure Working Group and she is co-chair of the NALHN End-Stage Heart Failure Multidisciplinary Meeting.
Dr Caitlin Sheehan
Caitlin has been a Staff Specialist in Palliative Medicine at Calvary and St George Hospitals in the South Eastern Sydney Local Health District since 2010. Her clinical interests include advanced cancer care, cardiac supportive care, pharmaceutical cannabis, and virtual palliative care.
Caitlin is a Fellow of the Royal Australasian College of Physicians and the Australasian Chapter of Palliative Medicine. She is a conjoint lecturer at the University of New South Wales (UNSW) and is an Honorary Fellow at the University of Technology Sydney (UTS).
Since 2014, Caitlin has been a clinical researcher at Calvary Kogarah and site investigator for PaCCSC and CST clinical trials. She has proactively facilitated clinical trial participation across a range of trials investigating ways to improve the quality of life of people receiving palliative care and for better cancer symptom management. She has led and collaborated with a number of teams to secure grants to fund and advance research into palliative care and has published 14 peer-reviewed articles.
In addition to being the Rapid Program Medical Investigator, Caitlin is a member of the Cognitive and Neurological Symptom Node Subcommittee. She is also an executive member of the SPHERE Palliative Care Clinical Academic Group (PC-CAG). She has served as a member of the PaCCSC and CST Trial Management Committee and is a former member of the PaCCSC Scientific Committee.
Caitlin is passionate about providing the best evidence-based care for patients at the end of life and enabling the research to inform best practice in clinical decision making.
Dr Gursharan Singh
Dr Gursharan Singh is a Research Fellow in Palliative Care at the Cancer and Palliative Care Outcomes Centre at the School of Nursing, Queensland University of Technology (QUT).
Gursharan holds a Bachelor of Medical Science (Hons) from the University of Technology Sydney and a PhD from Western Sydney University on access and referral to palliative care for individuals with heart failure from the perspectives of cardiovascular and palliative care health professionals. She is an early career researcher whose program focuses on improving palliative care delivery in various settings and populations, heart failure models of care and linked data.
During her time at QUT, Gursharan has led a scoping review on elements of integrated palliative care for individuals with heart failure. She has had a key role in funded linked data studies examining hospital service use in the last year of life by individuals who died of heart failure or cardiomyopathy and a needs analysis of palliative care delivery across Australia. Her expertise has been instrumental to the award of other grants in the field of non-malignant palliative care in the inpatient setting.
Gursharan has published her research in cardiovascular peer-reviewed journals and has presented at national and international conferences. She regularly contributes to peer review and is a member of Cardiac Society of Australia and New Zealand and Queensland Palliative Care.
Dr Claudia Virdun
Dr Claudia Virdun is an experienced specialist palliative care nurse interested in enabling optimal care for people with advanced serious illness, irrespective of care setting. Her passion for excellence in palliative care has seen her focus on varied clinical experiences combined with research and improvement work to inform service change.
This deep professional experience coupled with emerging research capabilities enables Claudia to take a holistic, practical and critical “end to end” approach to research that is well informed by current issues from clinical and health workforce perspectives, is innovative, relevant and able to “cut through” to drive successful improvements in care delivery.
Claudia has recently completed her doctoral studies focused on enabling optimal inpatient palliative care and is currently a Senior Research Fellow for the Faculty of Health at the Queensland University of Technology.
Publications
Piotr Z Sobanski, Bernd Alt-Epping, David C Currow, Sarah J Goodlin, Tomasz Grodzicki, Karen Hogg, Daisy J A Janssen, Miriam J Johnson, Małgorzata Krajnik, Carlo Leget, Manuel Martínez-Sellés, Matteo Moroni, Paul S Mueller, Mary Ryder, Steffen T Simon, Emily Stowe, Philip J Larkin, Palliative care for people living with heart failure: European Association for Palliative Care Task Force expert position statement, Cardiovascular Research, Volume 116, Issue 1, 1 January 2020, Pages 12–27, https://doi.org/10.1093/cvr/cvz200