What prevents access to palliative care by people experiencing homelessness? The story in New South Wales

An article written by Emma Scott-Stevenson, Project and Research Coordinator

Between 2022-2024, Palliative Care NSW (PCNSW) conducted two scoping studies on homelessness and palliative care in New South Wales. [1,2] These studies aimed to explore the availability and accessibility of quality palliative care services for those experiencing homelessness and life-limiting illnesses across the state. 

PCNSW is the peak body for palliative care in NSW and advocates for quality palliative care for everyone, including those facing homelessness. Health professionals across NSW shared their experiences of caring for homeless patients and described the increasing rates of homelessness they had witnessed in their local areas. ‘Hidden homelessness’ could often be overlooked, and many were not aware that the definition of ‘homelessness’ also extends to those living in temporary, insecure or inadequate accommodation. 

The two studies explored the barriers that inhibit and prevent access to quality palliative care services for those experiencing homelessness and highlight the need for greater support and education surrounding care for this population. Health professionals expressed concerns regarding a lack of clear policies and procedures they should adhere to when caring for patients experiencing homelessness. They also described how standard entry procedures into palliative care services could prevent homeless patients from accessing these services, as patients would often not be able to meet the documentation or referral requirements. 

Health professionals further explained that limited staff and resources, particularly in regional and remote areas of NSW, make it even more difficult to provide quality palliative care to patients experiencing homelessness. The unstable and inadequate living environments could also cause difficulties for health professionals, in maintaining the safety of themselves, their patients and their coworkers. Managing these situations was described as ‘difficult’ and ‘stressful’, with one health professional explaining it was ‘really complex, and really hard for both the patients and clinicians as well’. 

Many patients were experiencing homelessness because of unexpected life circumstances, and this was exacerbated in regions that had experienced recent natural disasters, such as bushfires and flooding. One patient was described as losing both his employment and accommodation as a direct result of his life-limiting illness. Emergency accommodation could also be difficult to secure, and many patients struggled to find appropriate housing to accommodate their life-limiting illnesses and deteriorating health. 

When sharing their experiences, many health professionals expressed that they were deeply concerned about the accessibility of palliative care services for their homeless patients, but that they were unsure of who they could turn to for support. Despite the many challenges described, the health professionals did their best to ensure their homeless patients received quality palliative care services.

During these studies, health professionals called for greater support and education surrounding the delivery of palliative care to patients experiencing homelessness. They described the need for flexible models of care, with a greater emphasis on person-centred and trauma-informed care. Greater community understanding of the role of palliative care is also needed. The discussions generated through these studies are working to increase awareness of the needs of homeless patients with life-limiting illnesses, and it is hoped that these studies will contribute to greater support for the patients and health professionals in this space. 

Read more about Palliative Care NSW’s studies on homelessness and palliative care in NSW here.
 

Authors

Emma Scott-Stevenson

Project and Research Coordinator

Palliative Care New South Wales

Reference

1. Scott-Stevenson E, Asbury M. Homelessness and palliative care: A scoping study in regional, rural and remote NSW (654kb pdf). Sydney: Palliative Care New South Wales, 2024.

2. Scott-Stevenson E, Asbury M. Homelessness and palliative care: A scoping study in metropolitan Sydney (164kb pdf). Sydney: Palliative Care NSW, 2022.