Designing dignity: A new model for end-of-life care in disability support homes

It’s a topic many of us avoid. But for people living with cognitive disabilities in Supported Independent Living (SIL), avoiding the topic can mean missing out on the chance to die with dignity, in a place they call home, surrounded by people who know and care for them. 

Dr Lindsay Asquith, a researcher from the Faculty of Design and Society at UTS, wanted to change that. 

'If we want to die well, we need to begin from a place of honesty and reflection,' says Dr Asquith. 'Dying well is as important as living well.' 

The challenge of care at the end of life 

People with intellectual and developmental disabilities are living longer than ever before. But as they age, many face barriers to receiving appropriate end–of–life care. In group homes, support workers often lack the training or authority to administer pain relief. Families may be excluded or not want to be involved in decision–making. And residents themselves are rarely asked what they want. 

'There’s a history of paternalism in the disability sector. People are often assessed as unable to make choices, especially around death. That’s not just unfair – it’s harmful,' says Dr Asquith.

The result? Many residents are transferred to unfamiliar nursing homes in their final days, separated from the people and places they’ve known for years.

One support worker shared the story of a woman who had lived in her group home for 4 decades. When her health declined, she was moved to a hospice because staff weren’t trained to administer the medication she needed. 

'Her family fought for her to stay,' the worker said. 'We all did. But we just didn’t have the nursing staff available.'

Dr Asquith partnered with Northcott Innovation – a subsidiary of one of Australia’s largest disability service providers – to co–design a new model of care. 

The goal was simple but ambitious: to create a strategy for end–of–life care across Northcott’s 100 Supported Independent Living homes in NSW, one that prioritised the will and preferences of residents, and gave carers and families the tools to support them. 

The process was deeply collaborative. Over several months, Dr Asquith and her team conducted: 

• two co–design workshops with nurses, managers, and support workers
• a focus group with nurse leaders
• nine interviews with staff and one family member
• regular meetings with Northcott Innovation to refine the model.

'We made sure to test our assumptions,' says Dr Asquith. 'We listened carefully, checked our interpretations, and revised the model based on feedback. Everyone had a voice.' 

Despite the sensitivity of the topic, participants were eager to share their experiences. For many, it was the first time they’d been asked. 

'It’s going to help my fellow support workers,' said one interviewee. 'It’s going to help everybody who comes in touch with the customers – and the customers themselves.'

What the model delivers 

The final model outlines clear strategies for 3 stages of end–of–life care: preparation, the final weeks, and after death. It includes: 

• training for support workers in pain management and communication
• joint training with palliative care professionals
• advance care planning tools
• accessible information for families
• resources for grief and bereavement support.

It also proposes an innovative idea: training disability support workers to administer subcutaneous injections – a common method of delivering pain relief – so residents can remain in their homes during their final days. 

'Palliative care nurses already teach family members to do this,' says Dr Asquith. 'Why not train support workers too?' 

The hidden side of care 

One of the most powerful findings from the project was the depth of commitment shown by support workers. 

'Their desire to be there at the very end, even outside of working hours, was truly remarkable,' says Dr Asquith. 'They often put the needs of residents before their own. This is the hidden side of care that should be acknowledged.'

The model also considers the impact of death on other residents in the home – a topic rarely addressed in formal care plans. Strategies for minimising trauma and supporting grief are built into the design. 

Looking ahead: normalising the conversation 

Dr Asquith is now exploring ways to extend the work. She has been awarded a UTS Access and Inclusion Grant to develop communication tools that support end–of–life conversations. She’s also in talks with the Cemeteries and Crematoria Association of NSW about future collaborations. 

One idea gaining traction is the creation of a 'Death Café' – a space where carers, families, and staff can gather informally to share stories and support each other. 

'A café is a place for organic conversation,' says Dr Asquith. 'It could help take the stigma out of talking about death.' 

A model for dignity, a blueprint for change 

The model has been presented to the Northcott Board and is expected to be trialled in selected homes. While systemic change takes time, the project has already sparked important conversations and laid the groundwork for better care.

'Transformational change in this sector starts with understanding,' says Dr Asquith. 'Understanding what people want, what carers need, and how organisations can realign their goals to support both.' 

In the end, it’s about dignity. About making sure that people with cognitive disabilities are not just cared for – but listened to, respected, and supported to live and die on their own terms.