Informal Care Networks 

Informal care networks comprised of family, friends, and neighbours, are built on pre-existing relationships with the person who is ill and their loved ones. These trusted individuals can offer essential support, from household tasks and practical assistance to emotional and spiritual comfort. They may listen without judgment, provide a shoulder to cry on, or simply be present. Many bring with them valuable life experience, having supported others through difficult times. Their involvement fosters a sense of connection and strengthens the resilience of primary carers. 

Formal Service Providers

Formal providers, such as Banksia, general practitioners, hospitals, and services like MyAgedCare, play a critical role in coordinating clinical and practical support. They address physical symptoms, help manage care plans and empower carers with knowledge and resources. Importantly, they can also connect families with services they may not have otherwise known about, ensuring care is as comprehensive and responsive as possible. 

Death Literacy 

Death literacy refers to the knowledge, skills, and understanding that enable people to support someone at the end of life. Often developed through lived experience, this “practice wisdom” equips carers and communities to engage confidently and compassionately with the dying process. By fostering death literacy, individuals and groups can participate more meaningfully in care, making it a shared life experience rather than something hidden or feared. 

Community Connections 

Our broader social relationships – those formed through work, sports, religious groups, hobbies, and community organisations – are vital during times of illness. When someone is diagnosed with a life-limiting condition, these networks often shift. Maintaining and nurturing these connections during caregiving not only strengthens emotional support but also allows others to witness, learn from, and contribute to the care journey. A strong community presence reduces isolation, encourages empathy, and reinforces a sense of belonging. 

Place  

Place is more than a location – it encompasses the physical, emotional, social, cultural, and even spiritual environments that shape our sense of identity and belonging. For someone with a life-limiting illness, maintaining a connection to place can offer deep comfort and stability. This might be the familiarity of home, the presence of loved ones, or a sense of rootedness in community and landscape. It may also involve ties to cultural traditions, spiritual spaces, or memories that evoke safety and meaning. When care is delivered in ways that honour these connections, it affirms the person’s story, values, and relationships. 

A shared experience of care

Providing end-of-life care in the home nurtures a deeply personal and connected experience. Collaborative care allows individuals, families, and communities to walk the journey together – creating space for meaningful relationships, shared learning, and mutual support. It builds compassionate communities that are more informed, involved, and empowered in the realities of death and dying. 

Through this shared experience, we cultivate practice wisdom – insight born from real-life care – which strengthens the social fabric. Ultimately, collaborative care contributes to a society that values dignity, empathy, and connection at the end of life. 

Banksia’s vision on this topic was inspired by a report entitled End of Life at home: Co-creating an ecology of care.  Written by Associate Professor Debbie Horsfall, Dr Ainslie Yardley, Professor Rosemary Leonard, Kerrie Noonan and Dr John Rosenberg