The Family Carer Group Education Program
Palliative care aims to help people with an advanced incurable disease and one of the key features of palliative care is support for family carers. Research shows that a significant proportion of family carers are prone to negative financial, physical, psychological and social outcomes. Furthermore, family carers consistently report that they desire information and guidance to prepare them for their role.
Supporting family carers also indirectly promotes the wellbeing of the person diagnosed with advanced disease. The Family Carer Group Education program outlined in this resource has been comprehensively evaluate. The program has shown it can significantly improve how prepared and competent carers fee. Furthermore, after attending the program, family carers also report less unmet needs and are more able to acknowledge positive aspects associated with being a carer.
This resource has been designed to assist health care professionals to conduct The Family Carer Group Education Program in their setting. It includes demonstrations of key parts of the program, interviews with health professionals and family carers who have participated in the program, and a full set of instructional slides for the program. This resources may also be useful as a teaching aid for students of palliative care.
2020: Hot Topics in Palliative Care
CarerHelp: Helping your family carers be prepared for end of life care
CarerHelp (www.carerhelp.com.au) is a new online resource for people who are caring for a friend or family member with an advanced disease during the last months of life. It helps prepare carers by providing evidence based information via fact sheets, learning modules, videos, and interactive resources. CarerHelp can also be a useful resource for health professionals who work with people with advanced disease and their families. Australians who are caring for a family member or friend at the end of life are at risk of psychosocial distress. COVID-19 has brought more challenges to family carers including social isolation, increased reliance on telehealth, restrictions on visits to their relative or friend outside the home, and a possible increase in anxiety around the virus itself. This is in addition to the already high demands of caring and an increased risk to both physical and psychological health that carers may experience.
Planning for the COVID-19 pandemic
From the ICU and palliative care perspectives, this highly informative and extremely timely discussion was recorded during our live webinar on Tuesday 19 May 2020. Associate Professors Antony Tobin and Mark Boughey discuss how the challenges of the 2003 SARS epidemic may have helped inform our practices during the current pandemic and how the emerging frameworks can be considered for palliative care need during future pandemics. They also take a look at whether the COVID-19 pandemic planning and management process provided palliative care with a leadership opportunity, and if this has highlighted the role for palliative care in broader ethical, clinical and public health domains of care.
2018: Hot Topics in Palliative Care: How can you be compassionate when it feels like you have a gun to your head?
Filmed on 11 September 2018 – Watch Dr Margaret Ross’ presentation on ‘How can you be compassionate when it feels like you have a gun to your head?’ as part of the Centre for Palliative Care's regular Hot Topic lecture series.
This presentation addresses the issue of challenging families in palliative care – exploring the socio-cultural changes for modern families grappling with a dying loved one, how this translates to the healthcare environment and what we can do in the face of it.
Areas of discussion include:
- Understanding their world – what families bring into the ward environment
- Socio-cultural perspectives – do modern families have increasing demands/expectations?
- Standing in the face of it – how we can approach complex families and how to not take it too personally
2018: Death and Digital Media
A fresh insight of how digital technologies are used to mourn, commemorate and interact with the dead was presented by Dr Martin Gibbs (A/Prof , Department of Computing & Information Systems, University of Melbourne) and Dr Bjorn Nansen (Senior Lecturer in Media and Communications, University of Melbourne) on Thursday, 26 April 2018 at the Centre for Palliative Care’s Hot Topic Forum.
A combination of research and humour was used to engage the audience in a thought-provoking session on the juncture of death and digital media. The presentation briefly mapped the historical and shifting landscape of digital death by considering a range of social, commercial and institutional responses to technological innovations. The discussion centred around multiple digital platforms through a number of case studies drawn from Australia, North America and Europe and through these case studies an insight and analysis into emerging practices was provided.
Find out more by watching the video below:
2017: New Directives, New Obligations: The Medical Treatment Planning and Decisions Act 2016
How will the new Medical Treatment Planning and Decisions Act impact your practice?
This presentation made by A/Prof Mark Boughey (on behalf of Dr Sonia Fullerton) and Dr John Chesterman on 2 August 2017 provides an overview of the impact that the new Medical Treatment Planning and Decisions Act will have on your practice. Changes include new advance directives, new ways of appointing decision makers and the changed role of the Office of the Public Advocate. Find out how the new Act will impact your work on a daily basis by watching the video below.
2017: Hot Topics in Palliative Care: The Challenges of Chronic Disease Management in the Prison Population
Filmed on 3 May 2017 - Listen to Dr Charles Roth speak about "The Challenges of Chronic Disease Management in the Prison Population", as part of the Centre for Palliative Care's regular Hot Topic lecture series.
This presentation provides a brief overview of Prisoner Health Services, patient demographics and statistics in Australian prisons and discusses the high risk behaviours encountered in the prison population and their association with mental health and various infectious diseases. The presentation also provides examples of the challenges of mental illness and chronic disease management, as illustrated with case studies, as well as discussion about the current processes and limitations of managing the dying patient in prison.
2016: Hot Topics in Palliative Care: How 'hot' is dementia? Exploring issues for palliative and aged care
Filmed on 29 June 2017 - Watch Deirdre Fetherstonhaugh PhD speak about "How 'hot' is dementia? Exploring issues for palliative and aged care", as part of the Centre for Palliative Care's regular Hot Topic lecture series.
In 2013 dementia was the second leading cause of death for Australians. Over 50% of people living in residential aged care have a diagnosis of dementia. Most people who live in residential aged care will die there and not everyone will receive specialist palliative care; in fact very few people do. Residential aged care is palliative care. Therefore, staff working in aged care need to ensure that residents have a ‘good’ death and care provided is evidence-based. This presentation will explore some of the issues faced by aged care and palliative care services with the increasing prevalence of dementia in the Australian community. It will also draw on some of the research conducted by ACEBAC in this area.
2015: Hot Topics in Palliative Care: Lifting their spirits: Who provides spiritual care at the end of life?
Filmed on 10 November 2015 - Over the past decade or so spiritual care has become enshrined in palliative care rhetoric and is increasingly reported upon in the general healthcare literature. This literature is not entirely coherent; nor is the rhetoric. There is no agreed definition of spirituality, for example, and this both undermines measurement and blurs the formulation and implementation of policy. But there is a growing consensus around the core themes of spirituality and the need for an organised response.
One of these core themes is meaning-making. Clearly an encounter with the health system is for many people an event that shatters security and disrupts meaning; creates spiritual need, in other words. What is less clear is how the health system should respond – to what extent should healthcare practitioners be responsible for the effects of news they deliver? And if spirituality is a whole-of-life phenomenon, what are limits to a healthcare contribution?
A multi-disciplinary team that takes spiritual care seriously thus faces a range of questions, and some of these were explored in the hot topic discussion.
Dr Bruce Rumbold (Director, Palliative Care Unit, Department of Public Health, La Trobe University)
2014: Hot Topics in Palliative Care: Sedation in Palliative Care - Indications and Guidelines
Filmed on the 22nd October 2014, this webcast includes a lecture style presentation by A/Prof Jennifer Philip about the indications and guidelines around sedation in palliative care, followed by a multi-disciplinary discussion with the following panelists:
- Dr Justin Dwyer, Psychiatrist in Psychosocial Cancer Care Team, St. Vincent’s Hospital
- John Dalla, Palliative Care Nurse Coordinator at Alfred Health
- Annette Cudmore, Palliative Care Nurse Consultant at Goulburn Valley Hospice Care Consultancy Service Inc
- Dr David Brumley, Palliative Care Physician at Barwon Health and Lecturer at Deakin University
*Three cases will be discussed after the presentation which are all fictitious and an amalgam of patient-clinician scenarios.*
Download the Sedation in Palliative Care - Indications and Guidelines slides.
Slide the timer bar to each section.
- Sedation in Palliative Care- Presentation: 00:25 - 23:35
- Case Study 1 - Joe: 27.45
- Case Study 2 - Mrs K: 40.55
- Case Study 3 - Joyce: 49.06
Care at the end of life: Has the Liverpool Care Pathway lost its way?
Filmed in March 2014, A/Prof Mark Boughey (Director of Palliative Medicine, St Vincent’s Hospital Melbourne and Co-Deputy Director of the Centre for Palliative Care) presented on the outcomes of the Liverpool End-of-Life Care Pathway conference which he attended in late 2013. Additional resource: Response to the Neuberger Review by the International LCP Reference Group