The background
In 2022, TACSI was approached by SA Health’s Department of Health and Wellbeing to gather insights to understand the potential for a role/framework for grief and bereavement support that goes beyond the current service delivery.
Our approach
Over a period of six months in 2022, TACSI conducted an in-depth analysis of models of end of life care and services across a broad range of available services, including a review of Australian and international services.
We also conducted a series of 24 in-depth interviews with stakeholders, including:
- People who currently deliver navigation models and/ or end of life care
- People with lived and living experience of caring for someone transitioning through palliative and/or end of life care
- Carers caring for someone with a life limiting condition (LLC)
We placed a specific focus on individuals and groups who are traditionally underserved by the health sector, including (but not limited to) Aboriginal and Torres Strait Islander Peoples, LBGTIQ+ people, culturally and linguistically diverse groups, and people living with disabilities.
We then distilled our learnings into a set of principles designed to inform a future service model of care for the Department of Health and Wellbeing.
The insights
Services could be better connected
Patients and their caring networks have to navigate through a myriad of system and service supports at their end of life, many disconnected from each other.
The time needed to interact with services is overwhelming
There’s significant interaction with digital, legal, family and utility services, which can leave people feeling tired, stressed and overwhelmed.
Services can be too broad and don’t factor in unique needs
Both patients and carers have individual journeys and need specific support, with both groups encountering unique and specific barriers to access.
There’s a lack of diversity
Marginalised groups called out a lack of diversity and choice in clinical, community and informal care.
Services often felt impersonal
Both patients and carers had encountered services that were ‘transactional’ or ‘impersonal’ and lacking in warmth, and this often prevented them from navigating the myriad of services, resources and information.
Practical support is just one part of the equation
Participants told us that while being able to easily navigate and access services is critical, it’s equally as important to be able to access services that provide social and emotional support. We called this Wayfinding = practical support and Wayfaring = emotional support.
A lack of death literate services
We heard that emotionally intelligent and death literate services needed to be a priority in forming a new approach to end of life care.
These learnings allowed us to draw out common stories, frameworks for understanding how to better support end of life navigation, and areas to focus investigation on. These will all contribute to providing guidance on how to continually improve care navigation for palliative care and end of life in SA.
The outcomes
Patients with Life Limiting Conditions (LLC) and their carers identified clear paths forward to improve end of life care:
- Better coordination of healthcare services
- Better communication between services and patients (including language and medium)
- Increased trust in services and cultural safety
- Prioritising health services for and by Aboriginal people
- Reliable, affordable and sustainable services
- Distance and transport availability
- Increase the available hours of operation, including how to access support out of ‘standard’ hours
- Urgent review of out of pocket patient and carer costs (direct and indirect)
- Technology access (especially for postal, phone, video and email requirements)
- Equity and experience of discrimination based on gender, religion, disability, ethnicity, previous trauma and neurodivergence
- Cultural appropriateness (including customs and cultural expectations around end of life)
- Appropriate and timely referral
Funding models, coordination and connection of services were all highlighted as critical to the success of any new models.
