Delivering high quality, person-centred palliative care in aged care

Department of Health and Aged Care

Delivering High Quality, Person-Centred Palliative Care in Aged Care

Tuesday, 25 June 2024

Presented by:

Co-Chairs: 

Nicole Fitzgerald

Assistant Secretary, Newborn Screening and Palliative Care Branch, Department of Health and Aged Care 

Ingrid Leonard
Assistant Secretary, Choice and Transparency Branch, Department of Health and Aged Care

Presenters:

Distinguished Professor Patsy Yates
Executive Dean of the Faculity of Health at Queensland University of Technology and Director for Queensland Health’s Centre for Palliative Care Research

Fiona McLeod
Nurse Educator, Program of Experience in the Palliative Approach (PEPA)

Rebecca Moore
Project Coordinator, End of Life Directions for Aged Care (ELDAC)

Professor Claire Johnson
Director, Palliative Aged Care Outcomes Program (PACOP), Professorial Fellow, Palliative Care Outcomes Collaboration (PCOC)

[Opening visual of slide with text saying ‘Australian Government with Crest (logo)’, ‘Department of Health and Aged Care’, ‘Delivering high quality, person-Centred palliative care in aged care’, ‘Co-chairs’, ‘Nicole Fitzgerald, Assistant Secretary, Newborn Screening and Palliative Care Branch’, ‘Ingrid Leonard, Assistant Secretary, Choice and Transparency Branch’, ‘Presenters:’, ‘Distinguished Professor, Patsy Yates, Executive Dean of the Faculty of Health at QUT’, ‘Fiona McLeod, Nurse Educator PEPA’, ‘Rebecca Moore, Project Coordinator ELDAC’, ‘Professor Claire Johnson, Director, Palliative Aged Care Outcomes Program (PACOP)’, ‘agedcarequality]

[The visuals during this webinar are of each speaker presenting in turn via video, with reference to the content of a PowerPoint presentation being played on screen]

Nicole Fitzgerald:

Good afternoon everybody. Thank you for all attending today’s webinar. My name is Nicole Fitzgerald and I’m the Assistant Secretary of the Newborn Screening and Palliative Care Branch from the Department of Health and Aged Care.

I’ll begin by acknowledging the traditional custodians of the lands on which we are virtually meeting today. I am based in Canberra on the lands of the Ngunnawal people. I acknowledge and pay respect to their continuing culture and the contribution they make to the life of this city and this region. I also extend that acknowledgment and respect to other families with a connection to this region and any Aboriginal or Torres Strait Islander people who are here with us today.

Today I have the great privilege to co-chair this session with my colleague Ingrid Leonard who is the Assistant Secretary of the Choice and Transparency Branch in the Ageing and Aged Care Group. We’ll be showcasing for you a suite of education and training resources and programs that are funded by the Commonwealth to support your service and your staff in the delivery of palliative care. We will also discuss how palliative care is embedded in the aged care reforms and in particular how it will be represented in the strengthened Aged Care Standards.

We know that supporting people at the end of life can be incredibly rewarding but it is also challenging at times. It can be highly emotive and care can be complex requiring frequent review and assessment. The aged care workforce are an essential part of delivering this vital care to our older Australians. Today is about sharing with you some of the supports that are available and best of all to let you know that they’re free. You will hear today from experts in the field including Distinguished Professor Patsy Yates who will present on the Program of Experience in the Palliative Approach or as we like to call it PEPA, and the End of Life Directions for Aged Care Program. We will provide some specific case studies presented from Fiona McLeod, nurse educator of PEPA and Rebecca Moore, Project Coordinator ELDAC, and Professor Claire Johnson, Director of PACOP who will present on the Palliative Aged Care Outcomes Program.

There will be time for a question and answer session at the end of the webinar. You can submit questions in the Slido box on the right hand side of your screen at any time during the webinar and we will try to respond to as many questions as possible at the end. All questions and answers including ones that we may not get to today will be published in the FAQ document on the Department’s website post the webinar. 

Sometimes we receive questions that are unclear or not directly relevant to the webinar. Today out of scope for this webinar will be specific questions related to clinical care of individual people and any questions relating to voluntary assisted dying. If we are unable to answer a question during the session we will follow up with the relevant area in the Department and we will respond through the FAQ document. Questions submitted during the registration process have also been considered for this Q&A session. Webinar slides will be available on our website and the session is being recorded and will be published on our website in the coming days.

[Visual of slide with text saying ‘Australian Government with Crest (logo)’, ‘Department of Health and Aged Care’, ‘Nicole Fitzgerald’, ‘Assistant Secretary’, ‘Newborn Screening and Palliative Care Branch’, ‘Importance of palliative care in aged care’, ‘How we can support you to deliver quality palliative care in aged care’, ‘agedcareengagement.health.gov.au’, ’25 June 2024’]

So as we commence today’s webinar I would like to start by thanking you all for the work that you do and the vital role that you play in helping people and their families make informed decisions about accessing the care that they need. Everyone who works in aged care has an important role to play in the delivery of high quality palliative care. Today we’re going to look at how education and training programs available can help support you to provide palliative care but also how they link in with aged care reform, in particular the Quality Standards, to help you navigate, understand and implement the changing environment you are working in.

Palliative and end of life care is a vital part of care provided in aged care. Quality palliative care can have a profoundly positive impact on people and their loved ones’ experience with death and dying which is why this topic today is so important to us all. Palliative care supports people to live life as fully and as comfortably as possible with a life limiting illness and more specifically as they near the end of life. It’s an important approach that improves the quality of life for people and their family and carers at such a difficult and often very emotional time.

The importance of palliative care in aged care was recognised in the Royal Commission into Aged Care Quality and Safety recommendations. Since then the Australian Government has made a number of changes through the aged care reforms to further support the provision of palliative care to older Australians. We fund a number of palliative care projects with a focus on education and training to support the aged care workforce. Boosting your knowledge and skills will reduce some of the difficulty and emotional challenges associated with providing this very important care. It will help you to identify symptoms and changes in a person over time and support you to talk to people about death and dying and people’s end of life wishes. Having a good understanding of best practice palliative care can support you and your organisation to prepare for the implementation of the strengthened Aged Care Quality Standards. Throughout today’s webinar we will explore a few of our key programs in more detail.

And as well as the projects that will be showcased today there are a number of resources and education and training that is also relevant including topics such as end of life law and advanced care planning. We have developed several toolkits that contain a range of resources including editorial content, posters, videos, brochures, and we’ve even got some social media content to promote education and training in palliative care to the aged care workforce. You will be able to access these free resources through the Department of Health and Aged Care palliative care website using the QR code on your screen now.

Without further ado I’d like to now hand over to Ingrid who will discuss the reforms and in particular the strengthened Quality Standards and their relationship with palliative care. So over to you Ingrid. Thank you.

Ingrid Leonard:

[Visual of slide with text saying ‘Australian Government with Crest (logo)’, ‘Department of Health and Aged Care’, ‘Ingrid Leonard’, ‘Assistant Secretary, Choice and Transparency Branch’, ‘Aged Care Quality and Safety Standards’, ’25 June 2024’]

Thank you so much Nicole and good afternoon everyone. It’s a pleasure to be here today. As Nicole said my name is Ingrid Leonard. I’m the Assistant Secretary of the Choice and Transparency Branch at the Department of Health and Aged Care. Today I’ll be discussing the Aged Care Quality Standards and how they’ve been strengthened to include an increased focus on improving palliative care in aged care.

Today I will cover the development and structure of the strengthened Aged Care Quality Standards, how Standard 1 supports palliative care outcomes in aged care, key concepts for palliative care in the strengthened Standards, focusing on Standard 5, clinical care and the element relating to palliative care, and implementation of the strengthened Standards.

So the Quality Standards set out requirements for Government funded aged care providers to ensure that they deliver care that is safe and meets the needs and preferences of older people. Failure to comply with the Standards may result in the Aged Care Quality and Safety Commission taking regulatory action. 

So in response to Royal Commission recommendations a review of the Quality Standards has been completed. The review focused on areas to be enhanced including dementia, diversity, governance, clinical care and food and nutrition. During significant consultations undertaken to develop a strengthened set of standards we heard the need for requirements for improving palliative care outcomes, maximising dignity and comfort, and actions should align with national best practice guidelines, and specificity on areas where workers must be trained.

So the final draft of the strengthened Standards now has a dedicated clinical care standard which is person-centred, holistic and includes enhanced concepts relating to requirements to deliver high quality palliative care in particular in outcome 5.7. The structure of the strengthened Standards includes an intent statement, several outcomes and a number of actions. The outcome statements are the enforceable element of the standard in legislation and the actions represent how providers may meet those outcomes. 

So in December last year the Department published the final draft of the strengthened Standards and this is an important milestone as the final draft will inform legislative drafting into the new Aged Care Act.

As we all know it’s important to provide the right care for an older person who is living with a life limiting or terminal illness. Palliative care needs to be person and family-centred care with the primary goal being to optimise quality of life. The strengthened Standards emphasise the requirement for aged care providers to deliver person-centred care and place the needs of the older person at the centre of their care. The strengthened Standards were developed as a suite of Standards which interrelate. 

Standard 1 underpins the way providers and staff are expected to treat older people and is relevant to the application of all of the Standards with key concepts embedded throughout the Standards to achieve a holistic person-centred care. Standard 1 also directly links to the Statement of Rights by reflecting key concepts about person-centred care, privacy, dignity and respect, independence, choice and control and dignity of risk. It is expected that these key concepts under Standard 1 will be incorporated into every aspect of the older person’s care whether it be clinical or palliative care, assessment and care planning.

As I mentioned earlier the strengthened Standards have been enhanced to include key concepts and requirements for improving palliative care outcomes to support delivery of high quality palliative care. Examples of these key concepts begin in Standard 1 which reinforces the requirement for providers to understand and value the older person including their identity, culture, beliefs and life experiences. Care and services must be developed with and tailored to the older person considering their needs, goals and preferences. Everyone who works in aged care has an important role to play in delivering high quality palliative care and older people deserve to be cared for by workers who are skilled and confident.

Standard 2 requires providers to ensure their workers are skilled and competent and hold relevant qualifications and experience to provide quality care and services. Advanced care planning is critical to delivering high quality palliative care and it helps establish the care goals and the needs of the person and their family and carers.

Standard 3 which deals with the care and services requires providers to engage older people and others involved in their care about developing and reviewing their care plans through ongoing communication.

The provider must have processes for advanced care planning that supports older people to discuss their future medical care and needs and supports them to complete and review advanced care planning documents.

The new standalone standard on clinical care, Standard 5, contains a dedicated outcome on palliative and end of life care. An important component of Outcome 5.7 involves recognising where an older person has a condition that is life limiting and/or where they may be approaching the end of life and may benefit from a palliative care focus. Outcome 5.7 incorporates principles from the National Palliative Care Strategy, National Consensus Statement, essential elements for safe and high quality end of life care and National Palliative Care Standards for all health professionals and aged care services. Outcome 5.7 also requires providers to deliver care in line with the older person’s needs, goals and preferences. Dignity must be preserved, pain and symptoms must be actively managed with access to specialist care when required.

The Commission has published draft guidance material on their website to assist providers to understand and meet their obligations under the strengthened Standards and the Department continues to work closely with the Commission to develop further resources.

In terms of next steps for implementation of the strengthened Standards the Standards will come into effect in line with the commencement of the new Aged Care Act which Government has agreed to implement from 1 July 2025. The final draft of the strengthened Standards is being used to translate the strengthened Standards into law under the new Act and the Department is developing an integrated readiness plan to support older people and the sector to be prepared for all of the changes associated with the new Act.

Thanks Nicole.

Nicole Fitzgerald:

Thanks Ingrid. And to everybody online please forward your questions through and we will circle back to these at the end of the webinar.

[Visual of slide with text saying ‘Australian Government with Crest (logo)’, ‘Department of Health and Aged Care’, ‘Distinguished Professor Patsy Yates AM’, ‘Fiona McLeod, Nurse Educator’, ‘Program of Experience in the Palliative Approach (PEPA)’, ’25 June 2024’]

I will now hand over to Distinguished Professor Patsy Yates and Fiona McLeod to explain the Program of Experience in the Palliative Approach, or as we call it PEPA training, and also present a case study to show how education and training can assist in a practical way in aged care. So over to you Patsy.

Distinguished Professor Patsy Yates:

It is my privilege to be here this afternoon to share with you all some information about some education and training programs that can help your service, your organisation and your staff to deliver the best quality end of life care for older people. So I’m going to first talk about PEPA, PEPA our aged care component. 

And I would start also by acknowledging with deepest respect the traditional custodians of the lands on which we’re meeting today. Thank you.

So the PEPA learning pathway. So PEPA has been established for a while and it was based on some core principles. And those principles include that people deserve quality palliative care no matter what their age, no matter what their setting of care. And that means that the need to have skills and knowledge in palliative care is not just for specialist palliative care providers. It’s core business for the aged care workforce.

So PEPA’s based upon the assumption that we need to have some basic capability at the very minimum to deliver quality palliative care and the Standards which we’ve just seen reflect the importance of that. It’s also based upon the principle that to best learn to address the sort of complex issues that we face when caring for people at end of life we need to have particular learning strategies which encourage experiential learning, which enable opportunities for modelling and observation and which encourage critical reflection so that we can really appreciate how to respond to the complex physical, psychological, social and emotional and spiritual aspects of care that people need at end of life.

So this particular program, this particular learning pathway we have for PEPA is based upon this model that encourages those principles. And it’s based upon a principle and the pathway where we have nurse educators – and Fiona who will talk to you in a little while is one of our nurse educators – who go into an aged care service after having had a conversation with them about their particular service needs and learning needs of their staff. We tailor a two to four day education program for the service so that we best meet the needs to achieve the best outcomes for your staff.

The actual PEPA approach is delivered in – and this slide illustrates the three different sorts of aims that we have when we deliver a two to four day program in a service. And essentially it’s really about providing individualised learning experiences for non-specialist staff and aged care workers across all settings in Australia. So our educators will travel to any setting. And we call that a reverse placement model that we have developed. So it’s where educators go into your organisation, assess what you best need and deliver a program tailored to that. As part of that it enables us also to understand context and place so that we have an opportunity to understand what you can draw on in your local area, both your strengths, other resources internal and external to the organisation, and build that into our education programs. 

And lastly we also work with supporting staff to be ongoing mentors and champions so that the learning isn’t just happening in the two to four days that our educators are there, that we’ve built skills where that can be valued and integrated into the systems and structures overall. And lastly as part of that we encourage what we call post-placement activities. So once our educators leave we give you some tasks such as for example reviewing policies and procedures to ensure that palliative care is integrated at all levels.

So the PEPA process is really around you can apply. We receive applications through our standard website. Through that application then one of our educators will make contact, we’ll assess your readiness, assess what your learning needs are and develop a learning plan. On the basis of that learning plan we’ll do a two to four day workshop which encourages as I said quite active learning activities and it’s available to all staff. And sometimes people attending the workshop are not just the clinical staff but also can be other workers within a setting to enable them to gain an appreciation of at least some aspects of end of life support.

And then we also finish – because we do want to make sure that we support services to transfer that learning and have sustainable learning outcomes – we encourage participation in a community of practice, we encourage as I said, champions to really continue to take the lead and revise policies and procedures and continue to have discussions around quality end of life care.

The sort of topics we cover are listed on this slide and they range from everything around providing clinical care, communication which is such a big part, advance care planning, recognising deterioration and dying, again which is really critical to initiating good quality care, end of life care, the last few days of care in itself, ethical and legal issues, loss, grief and bereavement and self-care.

So to actually show what this looks like in action we’ve invited Fiona now to talk with you about an example of her role as an educator and what she’s done with one particular service. So over to you Fiona. Thank you. 

Fiona McLeod:

[Visual of slide with text saying ‘PEPA Aged Care: A Case Study’, ‘Presented by Fiona McLeod, PEPA Aged Care Nurse Educator’]

Thank you Patsy. And thank you for allowing me to present a short case study to enable you to have a greater understanding hopefully of the role PEPA Aged Care can play in improving care for older Australians. I’m going to focus on one site who completed a PEPA placement in 2023 where we come to you as Patsy said to demonstrate the impact of that aged care education placement, what we do on the ground when we come. 

The site I’m focusing on today applied for a PEPA Aged care reverse placement through their ELDAC action plan. So the two were linked. And the goal was to improve palliative care on the ground for their staff. You don’t have to be linked to ELDAC. You can apply as an individual site. We cover both residential aged care, wherever aged care is provided, so home based care providers as well. Once as Patsy said we receive an application you’re allocated an educator and they contact the site directly to find out and start the process, how we can meet their learning needs for their staff. There’s lots of similarities across sites but sometimes there’s uniqueness as Patsy said according to their context.

So we work with the same ten to 20 participants for up to four days and that doesn’t need to be consecutive days. What we’ve found when we’re working with providers is a flexible approach so that as many staff can get to that education as possible. We utilise a whole of workforce approach, so a multidisciplinary approach, and as Patsy said not just our clinical staff but the other important members of the team who have those conversations with people and families day to day.

It's an expectation as Patsy said that each complete a post PEPA activity and on the screen you can see one site have put together a palliative care trolley and according to their scope of practice we encourage certain activities along the way. The post PEPA activity is aimed at putting into practice key concepts and evidence-based tools introduced during the training. And we utilise and link other funded palliative care programs to minimise a duplication of resources such as PACOP, ELDAC, the Calvary Needs Rounds, CareSearch, the carer tip sheets and apps, and Palliative Care Australia and Dying to Talk resources. Educators link sites to local and state‑based palliative care providers to increase capacity and build ongoing relationships. And then the PEPA community of practice within our PEPA learning management system is where each participant enrols, can access further learning resources, can actually do more modules and extend their education. They’re all provided free for the participant. And we have a moderated LinkedIn site for participants so that they can continue to communicate and network with other providers.

One of the core skills that most sites identify and most participants identify that they struggle with is communication skills, so we spend a lot of time working on that specific area quite often. We have those specific sessions that have been developed to meet their needs. A lot of stories are shared about culture and cultural difference. Providing a culturally safe place for our participants is a priority as it is for the people in their care. We can empower staff with useful phrases and behaviours to guide communication and then encourage them to find their way of communicating that suits them and makes them comfortable.

I just want to draw your attention to the centre of this slide where a site did their post PEPA activities. They undertook a number of activities but their outcomes – and these were statements that were provided actually by the site. So the introduction of plans prompted discussions early, appropriate multidisciplinary referrals and decreased hospital admissions. They were providing best practice palliative care, good palliative care and they were meeting standards and best practice. The site had difficulty even mentioning death and dying before the education and now they’re talking about it early. It was a great outcome.

Confidence in providing care is developed through practice and often develops over time. So that’s the encouragement of that post PEPA activity involvement. And some of the post PEPA activities utilise toolbox talks or demonstration, actual hands on demonstration of care. A lot have produced palliative care resources, not just for the staff but also for families and for residents. They want to do a lot about improving palliative care for the people that they’re caring for. This site also engaged in needs rounds and linked with their community palliative care provider.

Just to end with my own personal reflection these participants in aged care come with passion and enthusiasm and they want to improve the care of the people they’re looking after. They want to put in place and improve their communication skills and many of the initiatives to improve care give them comfort and confidence to be able to talk about dying.

This site that I’ve highlighted today actually has rolled on further to include a number of other sites linked within their organisation. So it’s not just shared within one site. It’s been carried forward.

In summary sites have been able to demonstrate improved palliative care and alignment with accreditation standards. It builds a body of evidence of improved care and PEPA wants to work with you to achieve the goals you have in providing person-centred palliative care. I thank you and I look forward to working with other passionate aged care professionals to improve palliative care. Thanks.

Nicole Fitzgerald:

Thanks Patsy and Fiona for that presentation on PEPA. And it’s just lovely to see and hear how PEPA translates and supports aged care services in delivering this really important care. So thank you very much. 

We will now move over to talk with Professor Claire Johnson who is going to talk about the Palliative Aged Care Outcomes Program, or as we affectionately know it PACOP. So over to you Claire.

[Visual of slide with text saying ‘Australian Government with Crest (logo)’, ‘Department of Health and Aged Care’, ‘Professor Claire Johnson, Director’, ‘Palliative Aged Care Outcome Collaboration (PACOP)’]

Professor Claire Johnson:

[Visual of slide with text saying ‘PACOP’, ‘An introduction to the Palliative Aged Care Outcomes Program’, ‘Prof. Claire Johnson, Director’, ‘University of Wollongong Australia’]

Thank you very much Nicole and good afternoon to everybody. Thank you for this opportunity to talk to you and to describe really what PACOP is.

So PACOP aims to systematically improve palliative and end of life care through a model of palliative care ready for adoption and embedding by aged care organisations. It brings an established framework to assess residents’ palliative care needs and supports that early identification for the need for palliative care. PACOP provides a common language for staff to communicate changes in residents’ condition within their aged care team but it also provides an opportunity to use a common language for communicating to other palliative care services and clinicians and in fact some of our palliative care teams are asking for their PACOP assessments as part of the triage process so they can understand how the resident is travelling before they see them.

PACOP facilitates a continuous quality improvement process. It supports the strengthened Aged Care Quality Standards and provides evidence to aged care homes about how they are meeting those standards and supports national mandatory quality indicator reporting. PACOP provides an evidence-based approach for care basing the interventions that somebody puts in place on the problems and concerns of the individual and supports and empowers all staff in the aged care home to deliver high standard palliative care.

The program is a comprehensive palliative care model that ensures that no resident falls through the cracks.

So PACOP is one program but it’s made up of two modules that we’ve developed over time. The profile collection is the base or core component of PACOP. The profile collection introduces that standardised assessment framework and screening for the need for palliative care and identifies residents needing palliative care or the need to commence on the outcomes collection. And in the outcomes collection more frequent assessments are supported by the response protocol to guide appropriate and timely interventions.

In a little bit more detail the profile collection is a comprehensive assessment that is completed on all new residents into an aged care home and then once every three months. The assessment schedule fits into other routine activities that are happening in the aged care home such as potentially the resident of the day or the routine NQIP reporting program. Regular assessment and key criteria are used to identify those residents who are gently deteriorating and those who would benefit from palliative care. Information from those comprehensive assessments informs and guides care planning for moving forward.

We also developed as part of this profile collection a deteriorating resident assessment tool and we developed this at the request of the aged care homes to help them guide decisions around commencing palliative care for people who are acutely deteriorating between that routine three monthly assessment period.

The outcomes collection provides a protocol for people who need palliative care. Symptom distress is monitored daily by care workers building on their intimate knowledge and their relationship with residents. And they have a reporting back or a reporting up framework to their health professional. Comprehensive assessment by the health professional is at a minimum of weekly but daily if the resident is in an unstable phase or a terminal phase, so where they have acute needs.

The outcomes collection also introduces the PACOP assess, respond, plan protocol.

This slide shows the clinical assessment tools that are used as part of that PACOP assessment and it looks at distress and severity of pain and other symptoms, functional status, frailty and palliative care phase which is a measure of the clinical situation and urgency for interventions. In addition to these core assessments we have additional questions that look at the holistic needs of the resident. PACOP has four tools in common with AN-ACC which allows aged care homes to collect good, consistent evidence to support AN-ACC reassessments.

PACOP just doesn’t enrol or ask aged care homes to register in the program and then go away and deliver it. PACOP works with improvement facilitators to help those aged care homes embed the program into their routine practice. We have available introductory workshops, recorded presentations, resources for training and soon we will have a PACOP fundamentals online which can be part of that early adoption of the program. All the written resources and materials that are needed for embedding PACOP into daily practice are made available through the PACOP program. And aged care homes who participate in PACOP, they are included in our communities of practice to support each other and to help them step through the embedding of the process.

So routine assessment of residents provides information to plan and deliver care and to track changes in the individual resident’s condition over time. However the collection of assessment data also provides an opportunity for aged care homes to understand how well they are performing and to put in place quality improvement practices. Aged care homes are able to submit data to PACOP every six months and receive a consolidated report which compares how that aged care home is performing against their previous performance against other aged care homes in Australia and against aspirational benchmarks which have been established with the sector.

PACOP improvement facilitators work with aged care homes to understand their reports and to identify opportunities for quality improvement interventions. And given there’s six monthly reporting PACOP is a built in opportunity for the PDSA cycle for quality improvement.

This slide I’ve borrowed from the Palliative Care Outcomes Collaboration showing how specialist palliative care services have improved their care over time using a very similar approach that PACOP has adopted. In fact PACOP was developed out of the PCOC program. I include this slide because we have not been established long enough to be able to project how items have improved over a ten year period as this slide has.

PACOP has a similar benchmark that all residents who are in an unstable phase will be out of that unstable phase within three days and as you can see there’s significant improvement that has happened over time with the PCOC program. And in fact the importance of the closing the gap between the community and the inpatient services. I’m looking forward to seeing a similar improvement in the aged care sector over time and in fact that aged care homes will be performing at this level, because people who are dying have the right to equitable, high quality end of life care irrespective of the setting of care.

Because PACOP is funded by the Australian Government Department of Health and Aged Care it is free to all residential aged care homes in Australia. Thank you.

[Visual of slide with text saying ‘PACOP is funded by the Australian Government Department of Health and Aged Care’, ‘More information?’, ‘pacop@uow.edu.au’, ‘www.uow/info/pacop’, with image of QR code, ‘PACOP’, ‘Palliative Aged Care Outcomes Program’]

Nicole Fitzgerald:

Thanks Claire and thank you for the time taken for that really thorough presentation. And I hope it’s useful for everybody joining us for today’s webinar.

[Visual of slide with text saying ‘Australian Government with Crest (logo)’, ‘Distinguished Professor Patsy Yates AM, Chief Investigator’, ‘Rebecca Moore RN, Project Coordinator’, ‘End of Life Directions for Aged Care (ELDAC)’]

So we’re going to move back to Patsy and Rebecca to tell us all about what End of Life Directions for Aged Care project has to offer providers and the workforce more broadly. So back to you Patsy. Thank you.

Distinguished Professor Patsy Yates:

[Visual of slide with text saying ‘ELDAC’, ‘End of Life Directions for Aged Care’, ‘www.eldac.com.au’, ‘ELDAC Linkages’, ‘Distinguished Professor Patsy Yates AM, Chief Investigator’, ‘Rebecca Moore RN, Project Coordinator’, ‘QUT’, ‘Flinders University’, ‘UTS’, ‘Palliative Care Australia’, ‘ACCPA’, ‘AHHA’, ‘Catholic Health Australia’, ‘ELDAC is funded by the Australian Government Department of Health and Aged Care’]

Thank you. So ELDAC or End of Life Directions in Aged Care as Nicole has just mentioned is a multi-component project that incorporates a range of resources and strategies to improve the quality of end of life care for older people in residential and home care settings. It’s got a particular focus on building the capacity of the aged care workforce as well as strengthening the systems and organisational level programs that need to support the aged care workforce to deliver quality care.

So the objectives of ELDAC are listed on this slide and they include providing specialist palliative care and advanced care planning guidance to aged care providers and general practitioners. It’s about improving linkages between aged care services and palliative care services and we’re going to have a particular focus on that today. It’s about improving the palliative care skills and advanced care planning expertise of aged care service staff and GPs. And ultimately it’s about improving the quality of care for aged care recipients, preventing unnecessary hospital admissions and shortening hospital stays.

So the specific components of ELDAC – as I said it’s a multi-component project – are included in this slide. And now I’m just going to take you very briefly through the different components but we’re going to have a particular focus on the section which is called service partnerships. But starting with the greeny/blue segment in this circle. That’s about our information and advisory services. So we have a very large evidence-based, web-based hub where we have a range of toolkits, a range of evidence-based resources that are freely accessible to enable the aged care workforce to provide the sort of care that is evidence-based and high quality. It’s a very accessible, easily accessed web information advisory service which is able to be navigated with a whole range of different supports. 

The yellow segment is really emphasising that we have a technology focus to ELDAC as well and that includes delivering some of our resources, so through to the care worker app for example. We’re also experimenting with some things like dashboards that might ultimately help provide service providers with information they need about the standards of care. 

The workforce capacity segment there in green is really about where we have developed some learning pathways, where we’ve developed a web-based navigation hub where you can search for educational programs that might be relevant to your specific needs in palliative care.

The purply component there in service partnerships we’ll be talking about today. Here we’re really focused on bringing together all the parts of the service system to really focus on the person, to deliver that person-centred care.

And the pink part there is really where we focus on systems and organisations. And so it’s all linked. While these are listed as separate components all of these components are really about strengthening all aspects from care delivery through to the system to deliver quality palliative care.

So about the linkages program which we’re going to focus on and I’m going to hand over to Rebecca in a minute to give an example of what our linkages program has achieved at one particular service. Here we have a program which is supported by facilitators which assist an aged care service to build partnerships and service improvements and capacity building to achieve integrated care with a multidisciplinary approach. The facilitators work one on one with sites who enrol in the ELDAC program over a period of about 12 months. And they step through this program which involves multiple steps which Rebecca will show you. But essentially again it’s around assessing organisational readiness and capacity to deliver quality care. It’s about following a PDSA cycle, building a pathway, a plan of care to improve outcomes for the service. They’re supported all the way through that 12 month journey to undertake and implement their action plans and we continue to look at how we can identify gaps and priorities for improvement and ultimately building over time the confidence, knowledge and skills of the teams as well as strengthening the system. So it is really essentially a journey of building improvements in service delivery, capacity building and supporting partnerships.

Over the time that ELDAC’s been around, and we’ve been around now for about seven years, we have enrolled over 350 aged care services right across the country. And this slide is just really to illustrate that we really want to focus on providing this opportunity to improve care for all older people in Australia. So you can see from this graph here that we are working not just in our major cities of Australia but we have a real focus on working in our remote, very remote and regional areas of Australia. We’ve worked across all states and territories and we also have a particular focus on tailoring our approach to services that might offer care to specific populations who may have unique needs. So we have worked for example with 15 services to date who have a particular focus on providing care for Aboriginal and Torres Strait Islander populations for example. We also work with both residential and home care and to date we have about 20% of our services have been from the home care setting. Again it’s all about providing access to quality care for everyone no matter where they live or what service they’re enrolled in.

So I’m now going to hand over to Rebecca to give us an example of what she does in practice. Thank you.

Rebecca Moore:

Thank you Patsy and good afternoon everyone. The case story that I’m presenting today is about a 48 bed residential aged care service situated in a rural location about 45 minutes from a regional city. They are a standalone, single service organisation that are deeply embedded into the local community having been built by the community for the community.

So over the next four slides you will notice on the left hand side are the key activities and milestones of the program. One of the roles of the project coordinator is to help break down the activities of the program into manageable steps and to provide coaching through each step. In the first phase here you can see the onboarding phase. We identify key team members. The lead team in this case consisted of the service manager, quality and clinical care staff.

Monthly meetings for the service leads and the project coordinator via Teams or Zoom are diarised. Electronic folders and communication processes are set up. News of the service’s participation in the program was shared with their staff and an expression of interest was released which got a great lot of interest and response from all areas of staff including management, administration, clinical and care staff and maintenance.

The project coordinator then coached how to complete the five pre-implementation self‑assessment audits.

These audits were then undertaken and completed.

In the assessment and planning phase service mapping to identify key stakeholders in the delivery of palliative care and end of life care and the strengths of these connections was completed.

Feedback from completion of the audits was provided back to the service by the project coordinator. And following consideration of both of these elements the service then develops an improvement action plan focusing on their prioritised goals.

Key improvement goals included improving connections and working processes with local specialist palliative care providers, upskilling staff in palliative care and advanced care planning, reviewing and updating policies, procedures and processes associated with care provision at the end of life and building staff capacity in having advanced care planning or goals of care discussions and also in improving recognition of deterioration.

In the nine month implementation phase this is where the doing gets done. A palliative care and advanced care planning working group was formed consisting of 26 members which included those people who have responded and expressed interest from the EOI. A terms of reference and standing agenda were developed and ratified by the group and monthly meetings were held to really drive and embed the improvement goals.

The project coordinator then arranged and facilitated a face to face meeting on site with the service and the regional specialist palliative care provider. Role referral and communication processes were discussed and clarified and it was identified that the implementation of needs rounds may assist with bridging identified gaps and improving outcomes. So these were commenced on site weekly with the attendance of the specialist palliative care clinical nurse consultant.

Advanced care planning and palliative care education was undertaken also and consisted of both online and face to face training modalities. And policies and procedures were reviewed and updated.

Post-implementation audits were then completed. These are the same five audits that were done at the start of the program. And feedback comparing the pre-implementation and post‑implementation audits was provided by the project coordinator. This demonstrated overall improvement in each of the five audits. The service then provides the final report back to ELDAC. Greatly improved connections with specialist palliative care providers was reported. And one of the benefits the report included was about discovering new ways of working together, sharing innovative ideas and resources with others. Highlights reported were seeing the enthusiasm of staff of wanting to learn and improve their capacity and also of receiving positive feedback from residents and families at the end of life.

Participation and promotional opportunities was then undertaken by the service. This included case story development, having their logo on the ELDAC website and participation in the ELDAC linkages showcase.

To wrap I’d just like to say that despite COVID, floods, cyclones and the usual pressures of the sector the service improvements were truly significant and have been embedded into their everyday practice. It’s really so gratifying to witness real improvement and change and I think one of the ways this was demonstrated was when the staff were talking about how even their language had changed. They now talk about recognising deterioration with clients, families, other providers and within their own team. Thank you.

[Visual of slide with text saying ‘Thank you’, ‘ELDAC’, ‘End of Life Directions for Aged Care’, ‘www.eldac.com.au’, ‘Thank you for your ongoing support of the ELDAC Linkages program’, ‘Thanks to the Australian Government Department of Health and Aged Care’]

[Visual of slide with text saying ‘Stay Connected with ELDAC’, ‘ELDAC’, ‘End of Life Directions for Aged Care’, ‘www.eldac.com.au’, ‘Visit us: www.eldac.com.au’, ‘Email us: eldac.project@flinders.eud.au’, ‘Sign up to ELDAC News or connect with us on social media: ‘f ELDAC.agedcare’, ‘in eldac-aged-care/’, ‘T ELDAC_agedcare’, ‘v ELDAC’, ‘QUT’, ‘Flinders University’, ‘UTS’, ‘Palliative Care Australia’, ‘ACCPA’, ‘AHHA’, ‘Catholic Health Australia’, ‘ELDAC is funded by the Australian Government Department of Health and Aged Care’]

Nicole Fitzgerald:

Thank you Patsy and Rebecca for a wonderful overview of ELDAC and the case study to get us all thinking about how these resources can assist in boosting the knowledge of palliative care and how they can be used across facilities and with home care. And I’d just like to thank all our presenters today for your outstanding presentations and the time that you’ve taken.

[Visual of slide with text saying ‘Australian Government with Crest (logo)’, ‘Department of Health and Aged Care’, ‘Questions’, ‘Please use the Slido Q&A function to submit your questions’, ’25 June 2024’]

We’re going to move into the Q&A session now. Thank you to everyone who has submitted a question so far. For those that have missed it please submit your questions in the Slido box on the right hand side of your screen if you haven’t done so already. But I’ve got quite a few questions to ask our panel. So I’m going to kick off with the first question for Claire.

Q:        Are there any plans to work with popular clinical documentation systems to integrate PACOP forms into aged care IT systems?

Professor Claire Johnson:

In a very simple response thank you Nicole, yes. In fact we are working quite collaboratively with a number of IT vendors to get the assessment tools embedded into their care management systems but to also make sure that the information that goes into the care management system can be extracted appropriately for reporting at the reporting periods. So it’s a two way process and we are working in that – mind you we would be always encouraged by aged care homes and organisations who encourage their IT vendors to negotiate and to be part of the program and work with us to embed the tools.

Nicole Fitzgerald:

Thanks Claire. We’ve got another question for both Claire and Patsy.

Q:        Is the PEPA project and PACOP relevant to in home service providers?

Professor Claire Johnson:

So at the moment PACOP is targeting residential aged care. We are funded by the Australian Government Department of Health to focus on our delivery of PACOP for the residential sector. We do get a lot of questions around its relevance for the home care sector and we have made the tools and the resources available to everybody to use there in the public domain. And that will be an area of study for us in the future.

Distinguished Professor Patsy Yates:

And from the PEPA perspective I think as Fiona mentioned our educators will go to home care services. Sometimes it’s a little bit harder to organise the logistics but we do make a real effort to make sure that we are providing this education to all aged care providers.

Nicole Fitzgerald:

Thanks Patsy and Claire. So I’ve got another question for Claire and Patsy.

Q:        How do you motivate staff to see the importance of education and the benefit it has to the satisfaction of staff’s employment in their roles and of the delivery of person-centred, family‑centred care?

Professor Claire Johnson:

Did you want to go first Patsy?

Distinguished Professor Patsy Yates:

Yeah. Okay. Look I think this is a really good question isn’t it. Staff are so pressured with so many demands on their time. I think some of the ways is that we can start at the sort of leadership level and helping our leaders to sort of really appreciate that end of life care is core business for aged care providers. And I think the strengthened Standards is one way in which we’re going to make that truly visible. I think then our leaders really appreciating the value is critical.

Then I think in terms of staff part of what our experience is – and I think Fiona highlighted it – is actually really about people feeling a little bit nervous around this is an uncomfortable topic. And so we try and actually offer learning opportunities which are very safe, which is really about trying to demystify some of the aspects of end of life care and helping people see that they can actually do this and that they will be supported. So we do think it’s about the right leadership and culture in an organisation which really values and sees end of life care as core and then secondly it’s working with staff to really build their confidence.

Professor Claire Johnson:

Absolutely. And I can’t emphasise the importance enough of engaging with the senior members of an organisation as well as the people who are on the coalface, the importance that everybody is sold about improving the care that they deliver. Our experience has been that people who are working in residential aged care, they want to improve what they are doing. They are very motivated. The barrier that happens occasionally is how do we fit this into our schedule, hence the need to make the learning really applicable to meet the needs of the staff and to demonstrate to them that actually understanding and delivering palliative care in an organised framework can reduce your time because you’re not doing things that aren’t really necessary. It’s very targeted and very helpful.

So also the education needs to be logical as I was saying to meet the needs of the aged care home and the staff.

Nicole Fitzgerald:

Thanks Claire. Thanks Patsy. Ingrid I’ve got one for you.

Q:        Will palliative care training be mandated in the strengthened Standard under the proposed Aged Care Act?

Ingrid Leonard:

Thanks Nicole. So under the strengthened Standards in particular Standard 2 requires providers to ensure that their staff are skilled, competent and hold relevant qualifications to providing quality care and services. So workers must be trained to effectively perform their role and certainly providers can achieve this by ensuring their staff regularly receive competency based training in relation to core matters including person-centred care, culturally safe, fully informed care. So it is not specifically called out in the Standards but certainly the requirement on providers is to ensure that staff are appropriately trained and qualified to deliver person-centred care.

Nicole Fitzgerald:

Thanks for answering that Ingrid. Patsy I’ve got another one for you.

Q:        Is it possible to access ELDAC data de-identified on transfers to hospital for RACF residents and death data?

Distinguished Professor Patsy Yates:

So the data we collect, one of our audits is we have an after death audit where we ask the service to look at the five most recent deaths in their service and to look at what happened – and we’ve got some criteria – and to assess the extent to which the management of that end of life journey matched the sort of standards that we have. And we ask them to do that prior to implementing and following implementing. We also have a range of data which we collect around organisational readiness. And we don’t collect directly the service’s data around – specifically on a routine basis – around referrals and things like that but through our other audits and tools we assess organisational readiness, the quality of care, the learning needs and how that’s improved of staff. But eventually our goal we would like to actually build this into other data systems so that by working with PACOP for example that services will actually have much more routinely collected ways of measuring what’s going on against the sort of quality that we’re hoping to achieve. So short answer, yes we collect a whole range of data but not necessarily directly about referrals.

Nicole Fitzgerald:

Thanks Patsy. Rebecca I’ve got one for you.

Q:        How do we encourage staff to have advanced care planning discussions with residents and families?

Rebecca Moore:

I think that’s really about building their confidence. And with regards to that we undertake specialised training. It might be an online advanced care planning module training. I know that the PEPA facilitators also include advanced care planning in their training. So I think it’s really about improving their confidence through education but also that experiential opportunity to watch somebody undertake an advanced care planning discussion for example. And in different states and territories there are different approaches to facilitate that learning.

Nicole Fitzgerald:

Thanks Rebecca. This one might be Patsy or Fiona. I’ll leave it up to the both of you. 

Q:        Are there funds for PEPA training for home care and if an aged care facility has already utilised the funding for PEPA training are they eligible to apply again?

Distinguished Professor Patsy Yates:

At this stage because we have such high demand we are aiming to sort of try and reach new services. But we are always aware that sometimes there’s been such significant change in a service in terms of turnover of staff or new things that are going on in terms of expansion or change that we would always look at an application on merit to see whether that would actually add value. But I would say that we do have such demand and a waitlist as Fiona would attest to. But Fiona anything you wanted to add there?

Fiona McLeod:

Firstly there was also a question around whether home care providers can get some funding assistance to have PEPA education and they can. So we work with the provider to work out what that funding will look like so it’s individual for each site that applies. But agree totally with what Patsy has said.

Nicole Fitzgerald:

Thanks Fiona. Claire I have another one for you.

Q:        Is there any evidence yet that PACOP assessments and tools have improved the prescribing of anticipatory medications due to the prescriber being more comfortable, reassured with the resident’s likely trajectory?

Professor Claire Johnson:

We can say that there have been improvements already that we can demonstrate with PACOP but one of the things that we don’t assess in the PACOP assessment suite is what prescribing has taken place. We have the assess, respond, plan protocol which highlights areas in a particular assessment that may indicate an intervention is necessary in a particular field but we don’t track those. We track the outcome which is symptom distress and symptom severity.

Nicole Fitzgerald:

Thanks Claire. I have another one either for Patsy or Rebecca.

Q:        Is death literacy part of the ELDAC audits pre and post?

Distinguished Professor Patsy Yates:

The audits assess knowledge and confidence of staff and define that across a broad range of domains. And so that in essence does mean death literacy and confidence in actually being able to understand what end of life means and the sort of care that people need. So our learning needs assessment tools do assess all of those knowledge, confidence and skills capabilities.

Nicole Fitzgerald:

Thanks Patsy. Just one follow up question for you.

Q:        Could you please just clarify where PEPA fits into ELDAC?

Distinguished Professor Patsy Yates:

Okay. So they are two separate programs however we have the privilege as part of a national palliative care program of actually really trying to make sure that all of our projects and our work complements each other. So people can apply for a PEPA program itself, for PEPA aged care and just have an education workshop, but for other services they really would like to undertake a full 12 month ELDAC journey and go through a full organisational change and systems improvement activity. Part of that journey might be that they draw on a PEPA experience to build the staff capability so you can actually enrol in both. They’re two separate programs. And that’s a good thing because we know that services are at all different sort of levels. And for ELDAC we often have a lot of expressions of interest and then when we talk people through the commitment they say ‘Maybe not just now. But we want to get there’ so maybe building their confidence and a bit of education of staff is a starting point and then down the track we find that often six or 12 months later they say ‘Look now we’re ready. Things have settled. Please take us on this journey’. So they’re two separate programs but are related and definitely are aimed to complement each other rather than duplicate.

Nicole Fitzgerald:

Thanks for clarifying Patsy. And we’ve got one final question. I’m really conscious of time but I’ve got one and I’m going to open it up to the panel to fight it out to see who wants to answer it.

Q:        How can providers work collaboratively with GPs to ensure appropriate resources, eg anticipatory prescribing, planned hospital based interventions for symptom control, that they’re available to facilitate smooth palliation?

Professor Claire Johnson:

I’d be happy to start off on that question. So part of the PACOP program is to identify those residents who are deteriorating and who have increasing palliative care needs. And one of the things that we encourage aged care homes to do in response to identifying palliative care needs or the need for palliative care is what do we do with this information. It’s great having head knowledge but we want to know what are we going to do to help this particular resident. So in the profile collection we have a list of ideas. Do we need to have a good conversation with the family? Do we need an external consultation either with the GP or with a palliative care service? What other things do we need to bring in to be able to support this person as their condition changes, including advanced care planning? So at each stage of the PACOP program we are encouraging aged care homes to think about what does this mean? Where do we change? What do we need to do to respond to the needs and problems that have been identified?

Distinguished Professor Patsy Yates:

And I think these are the sort of conversations that both Fiona and Rebecca would have on a day to day basis with services. I’m going to ask Fiona and Rebecca to maybe just give their strategies for addressing this common issue.

Fiona McLeod:

I’ll start if you like Rebecca. I talk about building a body of evidence for your case. And one of the principles of palliative care is around advocacy and empowerment. So you need to advocate for your resident or your person in the bed at the centre of that care. And you build this by yes you do the assessments. These tools build your body of evidence that then you take to the GP. It’s the age old question. How do we get someone who’s time poor and perhaps doesn’t see the need for education to do education? But PEPA does have some GP sessions, education sessions. It’s got learning guides. I often give them to facilities to leave for their GPs so hopefully there’s some pickup that way. But it is a struggle. We talk about what’s out there with apps, the GP palliMEDS apps and things like that. And I empower the staff hopefully to then work with their GPs. But only today. Only this morning this issue came up. It comes up every placement, just about working with a GP. It’s a struggle.

Rebecca Moore:

Yes. Ditto to everything Fiona said. It is really about upskilling the staff and giving them the knowledge and confidence to have these conversations with GPs, sharing those apps as well. But part of the linkages program is when we do undertake the service mapping the service has a look at who is around them that influences their palliative care and advanced care planning and end of life care and often or always I would even say GPs are one of those external stakeholders. We often will invite them to participate in the working group that is formed and to really come along on the ride, on the journey with the service. Obviously there’s not a lot of capacity a lot of the time but they’re definitely included in working groups and in the improvement cycle with the services.

Nicole Fitzgerald:

Thanks Fiona, Rebecca and Patsy and Claire. So that concludes our question and answer session. I would once again like to thank the panel of presenters today but most importantly I would also like to thank the audience for your participation, taking the time out of your day to support the webinar and your increased awareness around palliative care in aged care. And thank you for your questions. It’s great to hear that we’re able to share more about the palliative care education and training. I hope it sparks some interest. And thank you for making a difference in the lives and the quality of end of life care for those people that you care for.

As we finish today I’d also like once again to confirm that any questions that we were unable to get to during the webinar will be answered and posted on the Department’s website in the coming days, and that this webinar is recorded for you to share with additional staff who were not able to attend.

When the webinar finishes a short survey’s going to pop up in your browser. It takes around one minute to answer three questions. We’d really appreciate if you could spare some time just to provide feedback on today’s webinar but also to help us to continue to improve to deliver webinars that are relevant and important to the work that you do. So thank you everybody. Have a great afternoon. 

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