Abstract
Background:
This study analyzed data from a cohort of individuals living in outer regional areas who accessed Palliative Care Connect (PCC), a palliative care navigation program in South Australia.
Methods:
Demographic and diagnosis data were collected from palliative patients who accessed PCC. Navigation-specific data, reasons for contacting the service, main supports provided, and the main navigation outcomes achieved were collected for each episode of care delivered to an individual living in outer regional areas of South Australia who accessed PCC. Descriptive statistics, independent sample t-test, and chi-square test were performed using IBM SPSS Statistics Version 30.
Results:
Data from 124 outer regional patients were analyzed. The mean age of the cohort was 72.11 ± 13.19 years. Of the patients, 78 (62.9%) were living with family, 32 (25.8%) were living alone, and for 7 (5.6%) patients, living arrangement data were missing. The remainder were living with friends (1.6%), in residential aged care facilities (2.45), in supported accommodation (0.8%), or were homeless (i.e., 0.8%). For most patients (85.8%), the initial contact (check-in) with the service was made by themselves or their family members. At check-in, most of the patients (58.9%) were in a stable phase according to the Palliative Care Outcomes Collaboration phases, followed by an unstable phase (18.5%) and a deteriorating phase (15.3%). The most frequent reasons for which patients contacted the service were navigating the health care system, carer support, coordination of community services, access to palliative care services, home-based care coordination, and psychosocial/emotional support. The main outcomes achieved were patient empowerment and informed decision-making, access to support services, advance care planning, improved care coordination, timely access to services, enhanced symptom management, and facilitation of home-based care.
Conclusion:
Findings highlight the important role of palliative care navigation programs in improving access, coordination, and support for patients in outer regional areas.
Introduction
Palliative care (PC) and efforts to alleviate end-of-life suffering continue to be some of the most overlooked aspects of global health. 1 A report from the Australian Institute of Health and Wellbeing based on 2019–2020 data shows that 80% of all predictable deaths in Australia could likely benefit from PC but access is uneven. People in major cities are more likely to receive timely specialist PC compared with those in rural and remote areas, with some communities seeing around 15% of people with a life-limiting illness receiving timely care. 2 This is also true of South Australia, where data suggest that although 72% of people who died from terminal chronic conditions in 2021 are amenable to PC, only 55% received PC in public hospitals or from specialist or GP services defined as specifically PC. 3
PC service provision has expanded significantly in Australia in recent decades. Yet, access gaps remain, particularly for socially and geographically disadvantaged groups.4–7 This has led to a growing interest in ways to tackle awareness, equity, and access issues. PC navigation is emerging as a strategy to connect patients, caregivers, and families with essential health and well-being services. Diverse approaches to navigation have been used in other health areas including cancer and aged care as well as community-led navigation. The focus on the needs of an individual can mitigate the effects of geography, diagnosis, and cultural and socioeconomic factors.8–11
This study examines the demographic and needs-based characteristics of patients in outer regional South Australia who accessed services through Palliative Care Connect (PCC; www.palliativecareconnect.com.au), a PC navigation service funded by the Australian Government and piloted by South Australia (SA) Health. While studies provide some context on Australian PC, this study offers unique data on the self-identified PC needs of people living in outer regional and remote areas. It discusses reasons for contacting the service, types of support provided, and outcomes achieved within an outer regional cohort. These findings provide insights that can inform the planning, design, and improvement of PC services tailored to regional needs.
Materials and Methods
This research was conducted using data from PCC, a PC navigation service funded by the Australian Government and being piloted by SA Health.
Palliative Care Connect
Grant funding has been provided by the Australian Government to South Australia to develop and pilot a suite of community PC and bereavement navigation services. Led by SA Health, The South Australian Palliative Care Navigation Pilot, known as PCC, aims to improve access to palliative and end-of-life care, enhance patient and community awareness and understanding of PC, support patient choice, and create a more coordinated system by connecting individuals with needed supports. The PCC suite of services include:
PCC Statewide Navigation Service PCC Regional Navigation Service PCC Aboriginal Navigation service Bereavement Navigation Service Bereavement Groups/Counseling Palliative Care Volunteering SA Website (www.palliativecareconnect.com.au)
Palliative Care Navigators, available through the phone line, provide PC information and service linkages and empower individuals to make choices aligned with their culture and preferences. Navigators also support general practitioners and other health care professionals, including those who work in PC units, acute care, and aged care services, to organize and link people to appropriate supports. The addition of in-person support was tested by the PCC Regional Navigation Service between April 2024 and June 2025.
Data
Data from 124 patients were collected by navigators using a Salesforce system and compiled for analysis in Microsoft Excel. Analyzed data include:
Demographic profiles of patients. Primary diagnosis. Palliative phase at entry and exit: At both initial contact and conclusion of navigation support, PC phases were assessed using the Palliative Care Outcome Collaboration (PCOC) scale.
12
Case priority: At first contact, navigators assigned a priority level based on urgency and complexity (low priority: general information required, medium priority: active intervention needed, and high priority: immediate and ongoing management required). Intensity of need: Navigators assessed the level of support required, categorized into five tiers to guide response and resource allocation: level 1 (self-management): simple queries resolved with straightforward information, level 2 (low intensity): extended conversations to clarify needs and provide guidance, level 3 (moderate intensity): active linkage to services, written instructions, or referrals, level 4 (high intensity): urgent but manageable situations requiring direct action, such as referrals to SA Community Nursing or coordinating with specialist teams, and level 5 (urgent navigation, crisis level): support that may include connection with emergency services such as ambulance or emergency department presentation, extensive follow-up, and close collaboration with multiple stakeholders. This structured approach enabled navigators to tailor support based on individual needs, ensuring timely, appropriate, and coordinated care. Reason(s) for contacting the service: Navigators recorded the reasons for contacting the service, the types of support offered, and referrals made, along with the main outcomes of each navigation episode using predefined categories defined by the research team through a literature review and focus group consultations. One key outcome was patient empowerment and informed decision-making, defined as a demonstrable shift during a care episode from uncertainty, anxiety, or lack of knowledge to a state of clarity, confidence, and proactive planning regarding palliative or advanced care needs. Navigators assessed and documented this outcome using the following criteria:
Enhanced knowledge and clarity
Verbalized understanding: The caller articulates, in their own words, a clear grasp of a previously misunderstood PC concept (e.g., distinguishing between palliative and curative care). Identification of next steps: A caller moves from a vague question (“What should I do?”) to identifying specific, actionable steps in their care journey (e.g., “I need to schedule regular GP visits.”). Increased confidence and reduced anxiety
Self-efficacy statement: A caller explicitly expresses a feeling of increased confidence or reduced distress about a previously overwhelming topic (e.g., “I feel more ready to have this conversation with my family.”). Shift in tone/engagement: The navigator notes a measurable shift in a caller’s tone from passive or anxious to engaged and solution-focused, particularly when discussing advance care planning. Initiated or advanced decision-making
Clarified preferences: A caller uses the information provided to make a clear internal or external decision about future care preferences (e.g., “I understand what you’re saying and will speak to my family about the ACD.”). Documentation initiation: A caller requests or commits to starting an advance care directive or related documentation (e.g., “Please send me the link for the ACD.”).
Analysis
Data analysis was conducted using IBM SPSS Statistics, Version 30, employing descriptive statistics, independent sample t test, and chi-square test.
Ethics
The study has been conducted in full conformance with the principles of the “Declaration of Helsinki,” Good Clinical Practice, the National Statement on Ethical Conduct in Human Research (2007, Updated 2023), and Australian Code for the Responsible Conduct of Research (2007) and within the laws and regulations of Australia. The study has been commenced following ethics approval from Bellberry Research and Ethics Group (Application Number—2023-11-1434, Protocol ID-Griff-092022) and site governance from the Department for Health and Wellbeing, South Australia Government. Our ethics application covers the use of aggregated data from the deidentified sample set. The data used were fully deidentified prior to analysis, and no direct contact with participants occurred.
Findings
The patients’ ages ranged from 36 to 104 years. The mean age was 72.95 ± 13.47 years for females and 70.92 ± 11.88 years for males, with no significant difference (P = 0.43) (Table 1).
Patient Demographic Summary
Among the 98 recorded disease types, 77 patients were diagnosed with cancer. Other nonmalignant conditions included respiratory failure: 4 patients; cardiovascular disease: 4 patients; dementia: 2 patients; and a range of other diagnoses: 11 patients. Disease type data were missing for 26 patients.
Among the patients living with family, contact origin data were missing for 26 individuals. Of the remaining 52, 42.3% of initial contacts were made by the patients themselves and 46.2% by family members. For patients living alone, contact data were available for 19 individuals. Of these, 52.6% of initial contacts were made by the patients themselves, 31.6% by family members, 10.5% by client aged care community providers, and 5.3% by clinicians (Table 2).
Who Called the Service
At commencement of care, 74 patients (59.7%) were classified as low priority, while 42 (33.9%) and 8 (6.5%) were identified as medium and high priority, respectively. Case priority was rated as low for 65.6% of patients living alone and medium and high for 31.3% and 3.1% of them, respectively.
Regarding intensity of care, 60 of 114 recorded cases (52.6%) were assessed as suitable for self-management and 31 cases (27.2%) were classified as low intensity, 14 (12.3%) as moderate, 6 (5.3%) as high, and 3 (2.6%) as urgent. At commencement of care, 89.7% of patients living alone were assessed as having self-management or low-intensity needs, compared with 78.1% of those living with family.
Cross-tabulation of palliative phase at the commencement and completion of care revealed notable transitions. Of the 23 patients initially assessed as unstable, the majority (n = 19, 82.6%) had transitioned to the stable phase by the end of care. Two patients (8.6%) progressed to the deteriorating phase and two (8.6%) entered the bereavement phase.
When the participants were grouped into two categories—“Unstable phase” and “Other phases”—statistical analysis revealed a significant difference (P < 0.05) between the commencement and completion of care, indicating an overall clinical improvement (Table 3).
Palliative Phase at Check-in for Patients Who Were Living with Family or Alone
The number of reasons cited per call ranged from 1 to 7, with a mean of 2.23 ± 1.30. On average, patients living alone reported 2.0 reasons per call, while those living with family reported slightly more, at 2.33. This finding might have different reasons and needs to be studied more. For example, a high proportion of people living with family have contacted the service for carer support, which gives one more reason for contacting the service.
Overall, 63.7% of patients contacted the service for one or two reasons, while 36.3% presented with more complex needs, citing more than two reasons during initial contact.
Table 4, highlighting the main reasons for contacting a PC navigation service, indicates that it is not “emergency care” that is being sought but assistance with the complexity of the care system, lack of coordination, and expectations on unpaid carers.
Main Reasons for Contacting the Service (Number of Calls for Each Reason)
The number of support types provided per call ranged from 1 to 12, with a mean of 3.14 ± 2.20 (Table 5). On average, 3.29 supports were provided to patients living alone and 3.20 to those living with family. The findings highlight that patients living alone received more supports than those living with family, despite presenting with fewer reasons for contacting the service. In addition to the supports listed in the table, service utilizers received a range of services and supports. The supports provided were aimed at addressing the reasons for contacting the service, as outlined in Table 4 .
Main Supports Provided for Patients/Carers
The number of navigation outcomes achieved per call ranged from 1 to 5 (mean 1.97 ± 1.11), with an average of 1.82 for patients living alone and 1.98 for those living with family. In addition to the outcomes listed above (Table 6), 16.9% of patients required further support and were referred to other organizations. The highest number of referrals for a single patient was six.
Main Navigation Outcomes Achieved
Discussion
Of the 110 callers providing age details, only 19 were aged under 60. This may reflect the realities associated with an aging population, where people are living longer and dying older. It is also possible that younger people with a terminal illness are more likely to have already been connected with a PC service. The impact of population aging can be seen in rural and remote settings.
Approximately 63% of patients were living with family and 26% were living alone. This proportion of lone-person patients is notably higher than the 7%–12% reported in an Australian scoping study by Aoun et al. 13 but aligns with the Australian Bureau of Statistics data (2021), which indicate that lone-person households account for around 26% of all households. 14
As the population ages, we could anticipate a growing cohort of older people who had previously cared for their partner and may approach the end of their own life living alone. This group in the population living without informal caregivers may require more institutional care. However, many older people prefer to remain in their own homes; hence, the provision and coordination of home-based care continues to be an ongoing need for them.
A notable finding of this study is the relatively high proportion of outer regional patients with nonmalignant conditions. This highlights the importance of recognizing and addressing the needs of noncancer patients in PC and the need for services and supports that address specific issues faced by them.
The PC phase provides a useful indication of the type of care a patient may require. The analysis of PC phases at entry and exit suggests that the navigation service was able to appropriately and rapidly direct those not in a stable phase to active service options. Given that more than 40% of patients were categorized as medium to high priority in terms of case priority and over 20% were classified as having moderate to urgent intensity of need scores, the need for swift navigation is highlighted.
The study highlighted the main outcomes achieved by a PC navigation service for an outer regional population. The most commonly documented outcome was patient empowerment and informed decision-making. Evidence increasingly supports the effectiveness and benefits of patient empowerment. 15 PCC recognizes patient empowerment as a key outcome, with valid criteria for its categorization assessing patient knowledge and understanding of PC, self-management and self-efficacy, and patient involvement in shared decision-making.
Patients and their caregivers often face significant challenges when navigating complex, fragmented, and poorly coordinated health care systems, and living in an outer regional location adds further complexity.11,16 Robinson et al., in their study, identified five key navigator roles that highlight their importance in coordinating care pathways and facilitating access within community-based PC teams, particularly for vulnerable populations. 17 The PCC model offers a similar navigation role for rural and remote patients and families, connecting them with appropriate information, services, and supports while facilitating transitions between care settings where needed.
Again, data from this study note the needs and contributions of family and carers. Family caregivers play an essential role in supporting patients in PC services.18,19 Therefore, supporting caregivers is an inherent component of PC. 20 Carer supports are among the most common supports provided by PCC.
PC patients experience diverse unmet needs. Previous studies have identified issues such as accessing transportation, affording basic necessities, obtaining stable housing, and avoiding social isolation.21,22 Thus, improving coordination and access to community services is crucial for patients and their caregivers, especially those facing socioeconomic hardship. PCC addresses these needs by linking people with a range of services and supports.
A growing body of literature supports the benefits of home-based palliative care (HPC) for patients, families, and informal caregivers. 23 A significant proportion of outer regional PCC contacts involved requests for HPC coordination. Coordinating these services was an achievement that reflects the project’s responsiveness to community needs.
Symptom management is an essential part of PC. Although only 11% of patients explicitly requested for pain and symptom management, it is essential that these needs are promptly addressed and appropriate referrals made to ensure comprehensive care. PCC also provided advanced care planning support to approximately 20% of patients, representing a meaningful outcome in promoting proactive care planning.
Effective communication is critical for a patient-centered approach in PC, ensuring that the preferences and needs of both patients and their families are clearly understood and respected. 24 PCC navigators play a crucial role in facilitating communication between patients and health care providers.
In their engagement with those contacting the service, navigators also provided a human contact critical for those experiencing substantial emotional and social challenges. Studies show a high burden of psychological disorders among PC patients and their caregivers.25–28 Beyond information and referrals, PCC provides psychosocial and emotional support for patients, families, and carers.
PC aims to align with patients’ values, goals, and preferences. Xia et al., in their systematic review, emphasized the importance of incorporating patients’ preferences into individualized, patient-centered care models. 29 PCC plays a crucial role in facilitating this by providing information to patients, families, and health professionals and promoting individualized care plans and shared decision-making.
Strengths and Limitations
This study provides valuable insights into the needs, service utilization, and outcomes of PC navigation in an under-researched outer regional population. A key strength of this study is that it outlines self-identified PC needs from those living in rural and remote areas. The capture of the reasons for contacting the service, along with the supports provided and main outcomes achieved by a PC navigating service, provides a unique insight into the issues and priorities of this population.
While the PCOC phases have been applied beyond traditional clinical environments, leveraging familiar PC terminology to guide navigator responses offers a standardized baseline for data capture and reporting. It also offers an opportunity to consider similarities and differences between cohorts in the navigation pilot and against specialist PC service data. It must be noted that navigators did not have face-to-face engagement with their clients and relied on the self-report of the carer and patient for their issues and needs.
The study is limited to a single regional cohort within the specific context of South Australia, which will limit the generalizability of the findings to other regions or health care systems. The data are preliminary data from a pilot study and subject to the awareness of this service within the regional area. As a retrospective analysis, it may be affected by incomplete or inconsistent data recording. Additionally, the absence of a comparison group limits the ability to draw broader conclusions or assess the relative effectiveness of the navigation program.
Conclusion
Findings from this study highlight the critical role of navigation programs in improving access, coordination, and support for patients and their families/carers in outer regional areas. Policy efforts should prioritize the expansion and integration of navigation services within regional health care systems as a channel for anyone to access information and guidance regarding palliative and end-of-life care regardless of their role or where they are in their journey. Strengthening these programs can enhance patient outcomes, reduce system burden, and promote equitable access to quality PC across geographic settings.
Authors’ Contributions
All the authors made a substantial contribution to the design of the work, as well as the analysis and interpretation of data. M.A.B. drafted the article, which was revised by J.T., K.S., D.H., and M.R. All the authors approved the version to be published.
Footnotes
Acknowledgments
The authors gratefully acknowledge the Care Navigators who clarified information during the analysis phase. Special thanks go to Jodie Altschwager, Lindsay Moore, Miles Morrison, Daniel Lewis, and Peter Zankar.
Funding Information
The Palliative Care Connect Pilot has been funded by the Australian Government’s Department of Health, Disability and Ageing. This work is independent research, and the sponsor has had no role in the design, methods, data collection, analysis, and preparation of this article. The views expressed in this publication are those of the authors and not necessarily those of the Australian Government, Department of Health, Disability and Ageing.
Authors’ Disclosure Statement
All the authors declare that they have no conflicts of interest to disclose.