A Respectful Death at Home: Minda and Palliative Care Connect’s commitment to compassionate end-of-life care

An article written by Lindsey Moore and Mariana Ricci, SA Health

An estimated 1.3 billion people (16% of the global population) currently live with a disability, a figure that is increasing due to rising noncommunicable diseases and longer life expectancy. [1] Evidence shows that people with disabilities experience significant inequities in access to palliative and end-of-life care compared with the general population. [2-4]

Research has found that poor collaboration between disability and palliative care services leads to fewer patients receiving both hospice and disability care. [5] Collaboration, information sharing and understanding of each other’s roles for end-of-life care is limited. [6-8] Although infrequent, partnerships generate improved outcomes, [9] and studies recommend a facilitator role to help bridge gaps and assist coordination between disability, palliative and end-of-life care services. [4]

A Respectful Death at Home project

For many people, home is where comfort, identity, and belonging are strongest. A place not only to live, but for some, also a place to die. Yet for people with disability living in supported accommodation, the opportunity to die at home has not always been available. Minda, a major South Australian NDIS provider, set out to change this through their A Respectful Death at Home project, which ensures residents receive compassionate end‑of‑life care in the place of their choosing, surrounded by the people and environment they know best.

The project began when Minda staff observed that residents nearing the end of life were frequently transferred to hospital for symptom management. Once admitted, barriers often prevented their return home, resulting in many dying in unfamiliar clinical settings, away from their peers and long‑standing carers. Seeking a more person‑centred approach, Minda reached out to Palliative Care Connect (PCC) for guidance.

PCC provided an overview of palliative care services across metropolitan Adelaide, outlining the roles of specialist and generalist teams and the responsibilities of GPs. This helped Minda staff understand what support was available, how to access it, where potential service gaps existed, and how to navigate them.

Building capability and confidence

With PCC’s support, Minda launched a comprehensive training program for staff that focused on building confidence in caring for people at the end of life. Training covered recognising end‑of‑life changes, understanding common symptoms, managing medications, and providing post‑death care.

One of the most significant challenges in disability settings is the administration of subcutaneous breakthrough medications during the terminal phase. To address this, Minda consulted with PCC and adopted a delegation of care model, enabling trained staff to administer these medications safely.

Collaboration that changes lives

PCC acted as an adviser and connector amongst existing players, Minda, specialist palliative care, and community nursing services.

This consistent partnership approach between disability services, primary and specialist care via palliative care navigation has strengthened communication, clarified roles, and ensured residents receive seamless, coordinated care.

“Having those conversations meant that the person got to go home with their family member, which has been amazing.” – Minda staff on their collaboration with Palliative Care Connect

The impact is already evident. Several residents have successfully returned home from hospital for terminal care. One resident returned home and passed away peacefully in his own room, surrounded by familiar faces, Christmas lights, and his favourite music playing.

The model established between Minda and PCC can be replicated and offered by more disability providers across South Australia. It is a model that honours choice, dignity, and the simple human desire to be at home at the end of life.

“Palliative Care Connect has been the glue that’s brought everything together. (…) They’ve absolutely been instrumental in helping us understand what and how to navigate the system.” – Minda staff

Reference

1. World Health Organisation. Disability. Available from: https://www.who.int/news-room/fact-sheets/detail/disability-and-health. Viewed: 20/01/2026.
2. Moore CM, Kates J. Navigating end-of-life needs for a person with intellectual disabilities and their caregivers. J Hosp Palliat Nurs. 2022;24(6):292-297.
3. Tuffrey-Wijne I, Wicki M, Heslop P, McCarron M, Todd S, Oliver D, de Veer A, et al. Developing research priorities for palliative care of people with intellectual disabilities in Europe: A consultation process using nominal group technique. BMC Palliat Care. 2016;15:36.
4. McCarron M, Burke E, Callion PhM, Timmins F. A qualitative exploration of healthcare workers' experiences of end of life care for people with an intellectual disability. J Adv Nurs. 2025;81(7):3972-3986.
5. Adam E, Sleeman KE, Brearley S. The palliative care needs of adults with intellectual disabilities and their access to palliative care services: A systematic review. Palliat Med. 2020;34(8):1006-1018.
6. Ronneberg CR, Peters-Beumer L, Marks B, Factor A. Promoting collaboration between hospice and palliative care providers and adult day services for individuals with intellectual and developmental disabilities. Omega. 2015;70(4):380-403.
7. Cross H, Cameron M, Marsh S, Tuffrey-Wijne I. Practical approaches toward improving end-of-life care for people with intellectual disabilities: Effectiveness and sustainability. J Palliat Med. 2012;15(3):322–326.
8. Reddall C. A palliative care resource for professional carers of people with learning disabilities. Eur J Cancer Care. 2010;19(4):469-475.
9. McLaughlin D, Barr O, McIlfatrick S, McConkey R. Developing a best practice model for partnership practice between specialist palliative care and intellectual disability services: A mixed methods study. Palliat Med. 2014;28(10):1213-1221.

Authors

Lindsey Moore

Palliative Care Navigator

Statewide Palliative Care Navigation Service, SA Health

Mariana Ricci

Manager – End of Life Care, Health Services Programs

Clinical System Support and Improvement, SA Health