Abstract
Background
Palliative care availability in public hospitals is critical for strengthening health services and expanding access to specialist support for individuals with complex needs from chronic, life‑limiting illnesses. This study examined attendance patterns, diagnostic distribution, and service pathways at a referral hospital in Uganda.
Methods
An institutional descriptive case study was conducted at Fort Portal Regional Referral Hospital, serving the Rwenzori subregion. Facility records and palliative care unit documentation were reviewed. Data sources included HMIS 008 registers, the EAFYA electronic medical records system, and District Health Information System (DHIS2) reports. Attendance was analysed using descriptive statistics, while integration into hospital services was evaluated through service pathways derived from thematic analysis of reported activities. Proportions of patients attending the unit relative to those potentially requiring end‑of‑life pathways and inpatient palliative care were assessed.
Results
Between July 2019 and May 2026, 2,133 patients attended the palliative care unit. Of these, 1,248 (60%) had cancer, 55 (3%) HIV/AIDS, 174 (8%) sickle cell disease, and 656 (31%) other conditions. Children comprised 6% of attendees. Attendance increased in 2025–2026, driven primarily by outpatient visits (65%). Service pathways demonstrated intra‑hospital and inter‑hospital linkages that supported collaborative care planning, psychosocial support, continuity of care, and knowledge sharing.
Conclusion
Attendance at the FPRRH palliative care unit indicates expanding access, with service pathways suggesting integration into hospital services. Notable gaps include limited pediatric access, low inpatient coverage and under‑representation of non‑cancer chronic conditions, which account for a substantial share of patients likely to experience serious health‑related suffering. Larger multi‑site studies are warranted to evaluate access relative to need and to identify strategies for equitable scaling of palliative care across Uganda’s public hospitals.
Supplementary Information
The online version contains supplementary material available at https://doi.org/10.1186/s12913-026-15092-y.
Keywords: Palliative care, Hospital-based services, Uganda, Fort Portal Regional Referral Hospital, Cancer, HIV/AIDS, Sickle cell disease, Pediatric palliative care, Outpatient attendance, Health system integration
Introduction
Palliative care (PC) is a specialised medical service that improves the quality of life for patients and families facing chronic, life-limiting illnesses. Its availability in public hospitals is important for strengthening health services and expanding access to specialist support for individuals with complex needs arising from chronic, life-limiting illnesses [1–3]. The 2014 World Health Assembly (WHA) resolution underscored its importance, calling for inclusion in global disease control strategies, health system plans, and medical curricula [4, 5]. Specialist palliative care addresses complex physical and psychosocial challenges such as chronic pain, vomiting, breathlessness, fungating wounds, anxiety, depression, caregiver burnout, and communication barriers [6–8].
Despite its importance, access to palliative care remains limited worldwide due to low public awareness, competing health priorities, and weak integration within health systems [9, 10]. For example, in Europe, only 12 countries have formal policies that regulate palliative care provision [9]. In Africa, most services remain outside public health systems, with only 11 countries, including Uganda, having developed national policy frameworks or programs to guide service development [10].
Where available, palliative care is often delivered by non-governmental organisations through home-based, hospice, and outreach models [1, 9], with limited presence in public hospitals. Yet establishing the services within public hospitals, where most people receive care, would increase access [3, 11, 12].
Uganda has made notable progress, including a 2021 Ministry of Health directive mandating the allocation of space for palliative care in referral hospitals. Consequently, national and regional referral hospitals have begun establishing dedicated units [13, 14]. Fort Portal Regional Referral Hospital (FPRRH) is among these institutions, operating a hospital-based palliative care unit [15].
However, there is limited literature describing hospital-based palliative care services that can inform replication, human resource planning, and resource mobilisation. While the Mulago-Makerere Palliative Care Unit, established in 2008, is a well-known example operating within Uganda’s public health system, its patient pathways remain underdocumented [16]. Moreover, recent efforts to expand hospital‑based services have not been systematically described, leaving gaps in evidence for policy and planning.
Therefore, this descriptive case study of palliative care services at FPRRH examined attendance patterns, diagnostic distribution, integration into hospital services, and proportion of patients who received PC relative to those who potentially needed end-of-life pathways or inpatient Palliative Care, between July 2019 and May 2026. The findings aim to provide policymakers, health system managers, and practitioners with evidence to guide the establishment and strengthening of sustainable hospital‑based palliative care services in low‑resource settings.
Methods
Study design and setting
This retrospective institutional descriptive case study was conducted at Fort Portal Regional Referral Hospital (FPRRH), a public referral-level hospital serving the Rwenzori subregion of western Uganda. FPRRH provides promotive, preventive, curative, palliative, and rehabilitative services [17]. The hospital serves eight districts (Kabarole, Kamwenge, Kasese, Ntoroko, Bundibugyo, Bunyangabu, Kyenjojo, Kyegegwa) and Fort Portal City, and recorded 47,504 outpatient visits and 10,697 inpatient admissions between July and December 2021 (bed occupancy 67%) [17]. The hospital’s palliative care unit delivers daily inpatient and outpatient services by a staff with specialist palliative care training.
Study population
The analysis focused on overall patient attendance and attendance by selected chronic conditions identified as likely to cause serious health-related suffering from severe physical or psychological symptoms [18–20]. They include Malignant neoplasms, HIV/AIDS, chronic cardiovascular disease (specifically heart failure), Chronic obstructive pulmonary disease (COPD), Chronic Kidney Disease (CKD), Stroke, and Sickle Cell Disease (SCD).
Outcomes
The primary outcome was attendance at the palliative care unit relative to potential need for end-of-life pathways or inpatient PC. The secondary outcome was a description of the service pathways relating to their integration into hospital services.
Inclusion and exclusion criteria
The study included all patient attendance records from palliative care registers and electronic medical records from July 2019 to May 2026. All implemented unit activities reported during the study period were included in the description of the service pathway. Planned but unimplemented activities were excluded from the analysis to ensure an accurate description of actual services delivered.
Data collection instrument and procedure
A standardised tally sheet with a checklist was used to collect data on annual attendance, unit activities, morphine procurement and consumption, and inclusion of palliative care data in the DHIS2 monthly reports. Attendance data were obtained from Palliative Care Unit registers (HMIS 008) and the electronic medical records system, EAFYA (Electronic + Afya, Swahili for “health”) [21]. Data on the number of admissions and deaths (July 2025 to May 2026) for the selected conditions were collected from the Medical, Surgical, Gynaecology, Pediatric, General Private, and Intensive Care wards in the EAFYA system. Activities performed by the palliative care unit were identified from the unit’s annual reports for the study period.
Data management and analysis
Data were entered and summarised in Microsoft Excel and Word. Descriptive statistics and charts were generated to illustrate attendance trends and diagnosis-specific caseloads.
Overall unit attendance was calculated as the total number of visits per year. The number of patients with the selected conditions attending the palliative care unit and the proportion of patients needing end-of-life pathways or inpatient palliative care were computed using annualised data for July 2025 to May 2026.
The proportion of patients who accessed palliative care relative to those who potentially needed end-of-life pathways was calculated as:
 |
The proportion of patients who accessed palliative care relative to those who potentially needed inpatient PC was calculated as follows:
 |
And
 |
To estimate the number of patients potentially needing end-of-life pathways or inpatient PC, multipliers previously outlined in the study on Serious Health-Related Suffering for decedents and non-decedents [20] were applied to the number of in-hospital deaths and admissions, respectively, for each condition. For Chronic cardiovascular disease (heart failure), COPD, and chronic renal disease, whose non-decedent multipliers were not listed, the multiplier for decedents was applied with the assumption that hospitalisation indicated a physical symptom burden and psychological distress similar to those needing end-of-life pathways.
To assess integration into hospital services, service pathways were derived and illustrated in flow diagrams. Reported activities were thematically grouped and categorised into inpatient services, outpatient services, and care linkages. In addition, integration was evaluated by reviewing the hospital’s medicines procurement template and dispensing logs for the inclusion of oral morphine, as well as examining monthly DHIS2 reports for the inclusion of palliative care data.
Ethical consideration
Ethical approval and administrative clearance were obtained from the FPRRH Research and Ethics Committee and the hospital administration, respectively, before data collection. Written consent was waived by (FPRRH-REC) since the study did not involve direct contact with patients, as data were collected from registers and unit reports. The study was conducted in accordance with the Declaration of Helsinki [22].
Results
Attendance pattern and diagnostic distribution
Between July 2019 and May 2026, a total of 2133 patients attended the Fort Portal Regional Referral Hospital (FPRRH) Palliative Care Unit. Of these, 1301(61%) were females, 832(39%) were males, 2010(94%) were adults, and 123(6%) were children. Those with cancer were 1248(60%), 55(3%) had HIV/AIDS, 174(8%) had SCD, while 656(31%) had other conditions. Annual attendance trends are presented in Fig. 1.
Fig. 1.
Annual attendance trends (2019–2026). The number of patients significantly increased from 2024 to 2026
For 2025–2026, annualised data indicated a total of 476 attended the palliative care unit, with 165(35%) inpatients and 311(65%) outpatients. The diagnostic distribution for that year is shown in Fig. 2, while access to the unit by ward is illustrated in Fig. 3.
Fig. 2.
Diagnostic distribution (2025–2026). The majority were cancer patients, followed by patients with other conditions that were not the focus of this study
Fig. 3.
Intrahospital patient pathways indicating interdisciplinary collaboration
Service pathways and integration
The service pathways are illustrated in Figs. 3 and 4. Activities that were not implemented at the time of the study and therefore excluded from the model include outreach to lower-level facilities and support supervision of palliative care services within those facilities. Figure 3 presents the care flow across inpatient and outpatient pathways, while Fig. 4 illustrates linkages to other public facilities and home-based care. It also depicts the proposed delivery of palliative care services across various levels of lower health facilities. Home visits are specifically proposed to be conducted by health centres. Table 1 summarises the grouped unit activities, and Table 2 outlines the parameters analysed to assess integration. Figure 5 shows access to the palliative care unit by ward, highlighting the distribution of service uptake across hospital departments.
Fig. 4.
Patient linkage between FPRRH and other Health facilities. Patient follow up is by phone calls. Home visits are proposed to be conducted by health centers
Table 1.
Unit activities categorised to derive service pathways
| Activities | Category |
|---|---|
|
• Daily outpatient clinic • Daily inpatient reviews |
Patient symptom management and psychological support |
| • Collaboration with specialists on various wards | Care coordination and linkage |
|
• Linkage to lower health facilities • Patients follow up (phone call) |
Care linkage and continuity |
|
• Continuous medical education (CME) • Mentoring staff and students on war |
Mentorship and knowledge sharing |
Table 2.
Parameters assessed to examine integration, with their likely impact on palliative care service development
| Parameter | Indicator/finding | Possible impact on service development |
|---|---|---|
| Systemic reporting | PC data included in the Monthly DHIS2 hospital report | Data visibility alongside other departments |
| Resource allocation |
- Space allocated for palliative care activities - Staff assigned to run unit activities - Morphine included in NMS procurement template |
Service sustainability |
| Cross-departmental linkage | Inpatients linked to the PC unit from various wards across the hospital | Establishment of collaborative culture |
| Care across service levels |
- Outpatient and inpatient services established - Patient follow-up and linkage pathways |
Care continuity across levels |
Fig. 5.
Access to the palliative care unit by ward. Eight (8) wards across the hospital linked patients to the unit, with the highest number from the medical ward
Access to palliative care relative to need
During 2025–2026, the selected conditions accounted for 962 hospital admissions and 195 in-hospital deaths. The overall proportion of patients who accessed palliative care, based on the estimated need for inpatient palliative care, was 20%, while the proportion calculated directly from admissions data (without applying standardised multipliers) was 14%. Tables 3 and 4 summarise access to the palliative care unit in relation to the potential need for end-of-life care and inpatient palliative care for each diagnostic category.
Table 3.
Access to the Palliative Care unit relative to the estimated need for end-of-life pathways
| Condition | Annualised Number of in-hospital deaths | Multiplier (decedents) | Estimated Number needing end-of-life pathways | Annualised Inpatient Number attended the PC unit | Estimated proportion received PC based on need for end-of-life pathways | Overall Proportion received PC based on need for end-of-life pathways |
|---|---|---|---|---|---|---|
| Cancer | 29 | 90% | 26 | 74 | 284% | |
| HIV/AIDS stage 3/4 | 47 | 100% | 47 | 16 | 34% | |
| SCD | 7 | 100% | 7 | 15 | 214% | |
| Heart failure | 38 | 70% | 27 | 5 | 19% | |
| COPD | 8 | 80% | 6 | 1 | 16% | |
| CKD | 28 | 45% | 13 | 8 | 63% | |
| Stroke | 38 | 65% | 25 | 13 | 53% | |
| Total | 195 | 126 | 132 | 105% |
Table 4.
Access to the unit relative to the estimated need for inpatient Palliative Care
| Condition | Multiplier-non decedents | Annualized admissions | Annualised Inpatient Number attended PC | Estimated No. needing inpatient PC | Estimated proportion received PC based on the estimated Number needing inpatient PC | Overall proportion received PC based on the number needing Inpatient PC | Proportion attended PC based on admissions (without applying the multiplier) | Overall proportion attended PC based on admissions |
|---|---|---|---|---|---|---|---|---|
| Cancer | 28% | 153 | 74 | 43 | 173% | 48% | ||
| HIV/AIDS stage 3/4 | 50% | 64 | 16 | 32 | 50% | 25% | ||
| SCD | 50% | 326 | 15 | 163 | 9% | 5% | ||
| Heart failure | 70% | 247 | 5 | 173 | 3% | 2% | ||
| COPD | 80% | 70 | 1 | 56 | 2% | 1% | ||
| CKD | 45% | 103 | 8 | 46 | 17% | 8% | ||
| Stroke | 65% | 245 | 13 | 159 | 8% | 5% | ||
| Total | 962 | 132 | 672 | (132/627) 20% | (132/962)14% |
Discussions
This study evaluated attendance at the Fort Portal Regional Referral Hospital (FPRRH) palliative care unit from 2019 to 2026, estimated the proportion of patients receiving palliative care relative to those in need, and described the unit’s care pathways.
Overall, the number of cancer patients attending the unit was significantly higher than that of patients with other conditions, indicating that cancer patients are more likely to be linked to specialist PC than patients with other conditions [23]. This pattern likely reflects greater clinician awareness of palliative needs in cancer, due to clearer disease trajectories, and established oncology–palliative referral pathways that facilitate linkage to palliative services [24]. On the other hand, the sizeable proportion of other non-cancer patients (40%) attending the unit suggests growing recognition of palliative needs beyond oncology at FPRRH. This finding is noteworthy, as existing evidence demonstrates that individuals with chronic life‑limiting conditions other than cancer account for a considerable proportion of palliative care needs [25]. Accordingly, targeted interventions to improve access to specialist palliative care for these populations are necessary [25–27]. Developing clearer care pathways for chronic non‑cancer conditions may improve their linkage to palliative services.
The number of children receiving palliative care was too low compared to the number of adults, underscoring the limited access to pediatric palliative care. This finding aligns with evidence from other low‑income settings, where pediatric referrals are typically infrequent and delayed, often attributable to limited palliative care knowledge among pediatric practitioners [28–31]. This study did not examine barriers and facilitators to pediatric palliative care. However, previous studies show that barriers and facilitators operate across multiple levels, including patient, health worker, interpersonal, and organisational domains and encompass factors such as staff knowledge, family attitudes, cultural beliefs, referral protocols, and policy gaps [29–32]. Geographic and health‑system constraints, including limited funding, infrastructure, essential medications, and culturally adapted services, further reduce access for children in low‑ and middle‑income countries [31, 33]. Addressing these barriers is critical to expanding the coverage and strengthening the quality of pediatric palliative care services.
Patient attendance increased from 2024 to 2026 compared with previous years, potentially reflecting increasing awareness of the palliative care service and improved patient linkage to the unit. Between 2025 and 2026, the number of inpatients was significantly lower than that of outpatients, indicating limited inpatient utilisation relative to outpatient care. This can be attributed to low awareness and possibly scepticism about palliative care. Staffing shortages can also limit inpatient referrals and the unit’s capacity to access and enrol large numbers of inpatients [34–36]. Yet, inpatient palliative consultations confer important benefits, including enhanced symptom control, caregiver support, and improved coordination of care with primary teams [34, 36]. Education to improve understanding of the benefits of inpatient palliative care and strategies to strengthen palliative care staff resilience could increase inpatient coverage [34, 36, 37]. Further studies are also needed to explore the barriers and facilitators for inpatient palliative care utilisation.
The proportion of patients who accessed the unit, relative to those estimated to require end‑of‑life pathways or inpatient palliative care, exceeded previously reported estimates: 11% in Uganda and 14% globally [38, 39]. It is important to note that, unlike previous studies, which estimated need based on prevalence statistics, this study derived estimations of palliative care need from inpatient deaths and admissions. These figures, therefore, reflect hospital capacity rather than community-level need. The proportion of cancer patients who accessed the unit relative to those potentially requiring end‑of‑life pathways (284%) suggests that the service captured all patients in need. However, this finding may reflect under‑reporting of cancer deaths, as many patients requiring end‑of‑life care were likely discharged into home‑based care. Furthermore, the proportion of patients who attended the unit relative to those estimated to need inpatient palliative care indicates low inpatient coverage.
The unit’s service pathways, inpatient attendance across multiple hospital wards, and the assessed indicators (systemic reporting, resource allocation, cross‑departmental linkage, and care across service levels) demonstrate integration within hospital services. These findings suggest a sustainable hospital-based palliative care service characterised by both intra‑hospital and inter‑hospital collaboration. Such integration supports coordinated, efficient patient care and facilitates effective transitions across settings, including home‑based care [40, 41]. The intra-hospital pathways are similar to interdisciplinary consultation teams described in other hospital settings and align with International Association of Hospice and Palliative Care (IAHPC) recommendations that hospital palliative teams proactively identify patients on wards [42, 43]. Integrating multi‑specialist expertise can promote timely specialist consultations and facilitate knowledge exchange [40, 44, 45].
The Use of phone consultations for patient follow-up is consistent with expanding mobile health approaches that support ongoing communication with patients and caregivers [40, 46]. Phone follow‑up can be a feasible alternative to in‑person care and has been shown to improve pain management, communication about clinical status, and medication support [47, 48]. A clear limitation of phone‑based follow‑up is inequitable access for patients who cannot afford a cellphone. Home visits for patients receiving home-based care were proposed to be conducted by lower-level health centres due to their smaller catchment areas, which increases the likelihood of being located closer to patients within the community.
A strength of this study is the seven-year observation period, which provides a robust view of palliative care access and service delivery at the hospital. The study also documents pathways within hospital‑based palliative care that can inform the establishment or strengthening of units in other public hospitals.
This study has several limitations. First, being single‑site, the findings may not reflect the broader extent of palliative care access across referral hospitals in Uganda. Second, the retrospective design may have been affected by missing or incomplete data. Third, estimating palliative care need based on hospital admissions and in‑hospital deaths likely resulted in underestimation, as the majority of individuals requiring palliative care are managed through home‑based services. Larger, multi‑site studies are therefore warranted to evaluate hospital‑based palliative care at a national scale and to identify context‑specific barriers and facilitators.
Conclusions
Between 2019 and 2026, the FPRRH palliative care unit demonstrated increasing patient attendance, with service pathways indicating integration into hospital services. Access was strongest among cancer patients, though a notable proportion of attendees presented with non‑cancer diagnoses, reflecting growing recognition of palliative needs beyond oncology and underscoring the importance of expanding tailored pathways for other chronic, life‑limiting conditions. Key gaps remain, including limited pediatric access, low inpatient coverage compared to outpatient services, and under‑representation of non‑cancer chronic conditions, which constitute a substantial proportion of those experiencing serious health‑related suffering. The service pathways, characterised by interdisciplinary intra‑hospital linkage, inter‑hospital collaboration, and phone‑based follow‑up, provide a practical framework for referral hospitals aiming to strengthen palliative care services. Larger, multi‑site studies are warranted to validate these findings nationally and to identify strategies for equitable scaling of palliative care across Uganda’s public hospitals.
Supplementary Information
Below is the link to the electronic supplementary material.
Acknowledgements
Anabo Annamaria: reviewed and advised on the model of care. Atim Stella: Participated in study planning. Microsoft Copilot was used in language refinement.
Abbreviations
- FPRRH
Fort Portal Regional Referral Hospital
- SCD
Sickle Cell Disease
- HMIS
Health Management Information System
- EAFYA
Combination of the two words: Electronic and AFYA (Swahili word for health)
- DHIS2
District Health Information System version 2
- CME
Continuous Medical Education
- HIV
Human Immunodeficiency Virus
- IAHPC
International Association of Hospice and Palliative Care
- WHA
World Health Assembly
- GYN
Gyneacology
- COPD
Chronic Obstructive Pulmonary Disease
- PC
Palliative Care
- CKD
Chronic Kidney Disease
Author contributions
IB: conceptualised, designed the study and wrote the main manuscript. DB: participated in study planning and data collection.
Funding
The study received no funding from sources other than the authors’.
Data availability
The data sets supporting the findings of this study are available in the supplementary information files.
Declarations
Ethical approval
Ethical approval was obtained from Fort Portal Regional Referral Hospital Research and Ethics Committee (approval number: FPRRH-2025-101) and the hospital administration before data collection. The study was conducted in accordance with the Declaration of Helsinki.
Human ethics and consent to participate
Not applicable.
Consent for publication
Not applicable.
Competing interests
The corresponding author is a senior staff member at Fort Portal Regional Referral Hospital.
Footnotes
Publisher’s note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Data Availability Statement
The data sets supporting the findings of this study are available in the supplementary information files.