Supporting implementation of aged care staff initiated advance care planning and palliative care needs assessment for people living with dementia

Project summary

HammondCare in partnership with the University of Sydney and the University of Technology Sydney has been awarded an ARIIA grant for their ‘Supporting implementation of aged care staff initiated advance care planning and palliative care needs assessment for people living with dementia’ project.

HammondCare is leading a national palliative care project funded by the Australian government called the Advance Project www.theadvanceproject.com.au 

The Advance Project has recently launched a new suite of dementia-specific resources and training that aim to make initiating end-of-life conversations and assessing palliative care needs of people living with dementia easier, to enable better care. The training is specifically designed for frontline staff working in aged care settings in Australia. The new resources and training were developed based on a literature review and extensive stakeholder engagement. However, the national project does not have scope to support implementation or formal evaluation of the new resources in practice in aged care settings.  

This project will involve working with champion sites within HammondCare's residential aged care services to co-design implementation approaches; supporting staff to embed the resources in practice, and formal evaluation of the new resources. The findings will inform ongoing quality improvement of the new resources, training, and organisation wide processes for providing advance care planning and palliative care for people living with dementia in residential aged care. Furthermore, the findings will inform quality improvement of the resources which are available nationally to the aged care sector.

Project outcomes

Background and Aims

HammondCare led a national palliative care project funded by the Australian government called the Advance Project www.theadvanceproject.com.au. In August 2022, the Advance Project launched a suite of dementia-specific evidence-based resources and training that aim to make initiating end-of-life conversations and assessing palliative care needs of people living with dementia easier, to enable better care. The training is specifically designed for frontline staff working in aged care settings in Australia. The dementia-specific resources and training were developed based on a literature review and extensive stakeholder engagement. However, the national project did not have scope to support implementation or formal evaluation of these resources in practice in aged care settings. 

This project aimed to demonstrate how the Advance Project (Dementia) resources can be implemented in the Australian residential aged care home setting and embedded into routine care. 

What We Did

This project involved working with two champion sites within HammondCare's residential aged care services to co-design implementation approaches, supporting staff to embed selected Advance Project (Dementia) resources in practice, and formal evaluation of these resources. 

Resources

The Advance Project (Dementia) resources that were implemented as part of this project were previously developed and include: 

1. eLearning courses for clinicians/managers (including allied health and pastoral care staff) and care workers working in aged and primary care available from www.theadvanceproject.com.au/dementia. These eLearning courses provide step-by-step approaches and guidance in initiating advance care planning and palliative care needs assessment with people living with dementia. The eLearning includes interactive case studies and videos based on scenarios in residential and community aged care settings. 
2. Advance care planning resources. These resources include practical tools for staff and resources for clients/residents/care-partners, to support the initiation of advance care planning for people with different stages of dementia (mild, moderate, advanced). These include conversation guides for staff, and reflective booklets for clients, residents and family members, to raise awareness and support discussions. The stage-based resources support staff to take an appropriate approach in involving people living with dementia and/or family members, including through shared involvement (‘planning together’) and substitute decision-making (‘planning for’) approaches. 
3. Palliative care needs assessment resources: These resources aim to empower aged care staff to identify people living with dementia who may benefit from palliative care and to assess their needs. One of the new resources, a structured Distress Observation Tool (DOT), enables aged care workers and family members to take a more proactive and collaborative role in identifying, monitoring and reporting signs and symptoms of distress among people living with advanced dementia, as part of the broader care team. This tool was developed by the Advance Project team in response to the reported difficulties faced by care staff and family members of people with advanced dementia, in identifying and communicating about signs and symptoms of distress, in particular when the person with dementia cannot describe these themselves. The use of this tool is aimed to support timely responses to distress, communication within the broader team and assessment of the person’s palliative care needs. 

The Advance Project (Dementia) resources and eLearning courses are freely accessible from www.theadvanceproject.com.au. If you have questions about the Advance Project please contact us on AdvanceProject@hammond.com.au. 

Outcomes

• Two site-level working groups were formed, to oversee implementation of the Advance Project training and resources in two HammondCare residential aged care homes 
• 63% of relevant staff across these two HammondCare residential aged care homes completed training about the Advance Project resources and used one or more of the Advance Project resources in their routine care provision during the implementation phase 
• Across the two aged care homes involved in implementing these resources, a number of changes in clinical processes were observed: 
  • Rates of documented advance care planning discussions for newly admitted residents (prior to admission or within eight weeks of admission) increased from 33% in the pre-implementation phase to 64% in the post-implementation phase. A similar increase was seen in two other comparable aged care homes in HammondCare. This increase may have been influenced by many factors including a stronger organisational focus on advance care planning and palliative care in residential aged care, adoption of a new electronic record and implementation of the Advance Project resources and training. 
• Documented use of the Distress Observation Tool for residents increased from 2% of residents in the pre-implementation phase to 85% of residents in the post-implementation phase.
  • In cases where the Distress Observation Tool indicated significant levels of resident distress, there was evidence of a clinical review or action plan in just under 80% of cases 
  • There was an increase in documented palliative care needs assessments for newly admitted residents (within the first 8 weeks of admission) in the post-implementation phase (36%) compared with the pre-implementation phase (0%). 
  • No increase in palliative care needs assessments for newly admitted residents (within the first 8 weeks of admission) was seen in the two comparable aged care homes in HammondCare (remained at 0%). 
• A total of 25 staff members participated in one of two focus group discussions and/or 15 individual interviews. Focus groups were conducted with staff involved in overseeing the implementation, and individual interviews were conducted with staff with experience of completing the training and/or utilising the Advance Project resources (5 staff participated in both an individual interview and focus group). 
• Positive feedback was received regarding the acceptability, usability and actual adoption of a number of Advance Project resources along with recommendations for ongoing progress in implementing these tools. For example, the qualitative feedback indicated that staff perceived the Distress Observation Tool could clarify the underlying cause of distress in a person living with advanced dementia, provide a more holistic perspective on distress, assist communication between staff and family members, validate and relieve family member distress and be suitable for use by non-clinical staff. Participating staff recommended incorporating the Distress Observation Tool into HammondCare’s new electronic record system and implementing this more widely across HammondCare’s residential aged care services. 

Impact on Aged Care and Workforce

This project has demonstrated the overall acceptability, feasibility and usability of the adopted Advance Project training and resources, and demonstrated how site-level working groups, when adequately supported, can effectively oversee the implementation of training and resources like these, with demonstrated impacts on clinical processes that are likely to reflect a positive impact on care quality.

Next Steps 

The findings will inform ongoing quality improvement of the Advance Project resources, training and organisation wide processes for providing advance care planning and palliative care for people living with dementia in residential aged care. For example, modifications will be made to the eLearning platform based on feedback received, and these amendments will be made available to the sector nationally via the Advance Project website. We will explore opportunities to incorporate elements of the Advance Project resources, including the Distress Observation Tool, into HammondCare’s new residential aged care electronic record system and implement these elements more widely across HammondCare’s residential aged care services.