Pediatric Palliative Care: A Retrospective Review from a Tertiary Cancer Center in North-Central India

Abstract

Introduction

Pediatric palliative care (PPC) focuses on enhancing the quality of life for children with serious illnesses and their families; however, timely referral remains limited in resource-constrained settings. This audit was conducted to estimate the prevalence and patterns of PPC referrals at a tertiary cancer center in north-central India.

Objective

The primary aim is to estimate the prevalence and patterns of PPC consultations among children with cancer at a tertiary cancer center in north-central India.

Materials and Methods

It is a retrospective audit of medical records conducted for pediatric patients (0 to < 18 years) referred to the department of pain and palliative medicine for PPC consultation between January 2021 and June 2024. All analyses were performed using SPSS version 22.0.

Results

Out of 2,226 newly registered pediatric patients, 456 (20.5%) were referred to PPC. The referral prevalence increased from 19.8% in 2021 to 22% in 2024. The mean age was 12 years, and hematological malignancies comprised 48.2% of the referrals. The major reasons for referral were best supportive care (31.1%), pain management (30.7%), and counseling (28.3%). Most patients (53.3%) underwent a single follow-up. Teleconsultation (n = 100) and home care (n = 18) services were provided but were underutilized because of logistical issues. The median follow-up was 29 months, with a mean overall survival of 3 months and a 2-year survival rate of 2.1%.

Conclusion

Integration of PPC continues to occur late in the illness course, often restricted to symptom-directed support. Implementing structured referral pathways, expanding telemedicine use and home-based models, and providing staff training could make care timelier, more comprehensive, and holistic. Embedding PPC within pediatric oncology can improve symptom control, family coping, and overall quality of life for children with cancer.

Keywords

pediatric palliative care - pediatric oncology - referral pattern - quality of life - review - India

Key Messages

• In India, PPC use remains low, with referrals often made at advanced stages of illness.

• Our audit found a referral prevalence of 20.5%, with hematological malignancies being the most common diagnosis.

• The main reasons for referral were best supportive care, pain management, and counseling, reflecting a symptom-driven approach.

• More than half of patients had only one follow-up, and uptake of teleconsultation and home care services was minimal.

• Strengthening early referral pathways, better community support, and increased awareness could make PPC more effective for children and families.

Introduction

Globally, around 400,000 children aged younger than 19 years are diagnosed with cancer annually,[1] [2] most of which cannot be prevented or identified through early screening. Reports estimate that ∼2.5 million children experience serious health-related suffering each year, the vast majority in low- and middle-income countries (LMICs).[2]

In high-income countries, where comprehensive health care services are available, the cure rate for childhood cancer exceeds 80%, while in LMICs, the cure rate is less than 30%.[2] [3] Each year, ∼21 million children worldwide need palliative care, with the greatest burden in LMICs. According to national cancer registry data, childhood cancers make up ∼3 to 5% of all cancers in India, with leukemia being the most common diagnosis. Survival rates remain at 60 to 70%, lower than in developed countries, due to late diagnoses and limited treatment access, making childhood cancers a major contributor to the global disease burden.[4] [5]

Palliative care aims to enhance the quality of life of patients and their family members. Both the World Health Organization (WHO) and the American Academy of Pediatrics advocate for the initiation of palliative care from the point of diagnosis for children with cancer, regardless of the prognosis.[4] Pediatric palliative care (PPC) is defined by the WHO as “the active total care of a young person's body, mind, spirit, and family, during a life-limiting illness.” The United Nations recognizes PPC as a fundamental right of every child facing a life-limiting illness, and the World Health Assembly[6] [7] resolved that “palliative care is a core component of universal health coverage and a key element of quality health care.” As many have mentioned, a large proportion of children at risk of developing cancer reside in LMICs.[8] A recent report suggested a high incidence of pediatric cancer and mortality rates in LMICs.[9] According to a recent National Cancer Registry Program (NCRP) report in India, childhood cancers in the 0 to 14 age group accounted for 4.0% of all cancers in India. The Population-Based Cancer Registry in Delhi (ICMR) and PBCRs (Population-Based Cancer Registries) are shown in [Figs. 1] and [2].[10] [11]

Fig. 1 Global impact of pediatric cancer burden.

Fig. 2 Global impact of pediatric cancer burden.

PPC is a holistic approach that seeks to relieve suffering and improve the quality of life for children with life-threatening or life-limiting illnesses and their families. Unlike traditional medical care, which focuses solely on cure or survival, PPC addresses physical, psychological, social, and spiritual needs. Over recent decades, PPC has transitioned from being primarily end-of-life care to an integral component of pediatric health care, introduced early in the disease trajectory alongside curative or life-prolonging treatments. In a middle-income country such as India, a substantial number of children face life-threatening illnesses, yet only a handful of specialized PPC centers exist, leaving significant unmet needs. To date, only a few retrospective audits[12] have examined referral patterns to PPC within oncology settings. In recent years, however, emphasis has increased on integrating palliative care principles into routine pediatric practice, irrespective of diagnosis. Innovative models, including hospital-based PPC teams, home-based care programs, and telemedicine services, are being developed to improve access and care coordination. In addition, there is growing recognition of the importance of bereavement support for families after the loss of a child, highlighting the need for comprehensive, longitudinal care. Early integration enhances symptom control, communication, and family support throughout the illness journey. However, timely referral remains inconsistent worldwide; many children with cancer are referred late, often in advanced stages or the last days of life. Such delayed or absent referrals frequently result in invasive interventions, prolonged hospitalizations, and missed opportunities to optimize care and quality of life. It also takes time to develop trust and believe your palliative physician during the advanced stage of illness. Few Indian studies found that most children continued chemotherapy during their last month of life, with referrals to palliative care occurring predominantly after active treatment ended. This pattern highlights delayed integration of palliative care, leading to limited symptom relief and suboptimal quality of end-of-life care.[12] [13] The current scenario underscores the urgent need for early integration of PPC. While 5-year survival rates for children with cancer in India have improved, they continue to lag behind those in high-income countries. Mortality among children with cancer remains disproportionately high in rural areas, largely due to delays in diagnosis and limited access to timely, specialized health care services. Contributing factors include a shortage of trained health care professionals, a lack of awareness among families, and the limited availability of pediatric oncology and palliative care centers. In LMICs such as India, additional barriers to early implementation of PPC include restricted access to opioids, fear of opioid use, lack of specialized expertise, inadequate interdisciplinary teams, limited family involvement in decision-making, and poor literacy.[14] [15] Early integration of PPC has been shown to support completion of cancer-directed treatment by managing pain and other distressing symptoms, while also providing emotional support and realistic hope for patients and families.[16] [17] Timely referral further facilitates goals-of-care discussions and enables a smoother process of shared decision-making, thereby ensuring comprehensive cancer care for pediatric patients.[18] [19] [20] Strengthening PPC in India and other LMICs requires a multipronged approach: (1) implementing widespread screening and awareness programs to promote early diagnosis, (2) improving health care infrastructure, particularly in rural and semiurban areas, (3) offering financial support and subsidies to reduce the economic burden on families and improve adherence, and (4) enhancing training programs for health care professionals to ensure accurate diagnosis, effective treatment, and timely integration of PPC.

At our institute, we run a PPC outpatient department (OPD) daily at our center. Emergency and inpatient department (IPD) services are available to them. Child and parent counseling are conducted separately. In addition, pediatric patients were enrolled in home care, teleconsultation, and phone follow-ups. The Make-A-Wish program is celebrated yearly, along with other activities to encourage children and families. We have started conducting monthly awareness sessions for caregivers in the pediatric oncology waiting area for early integration into palliative care and understanding.

This study aimed to estimate the prevalence and referral patterns of PPC consultations at a tertiary cancer center in the north-central India referred to specialist palliative care services. Additionally, its secondary aim was to assess the frequency of follow-up visits, the number of teleconsultations and home care visits provided, and family acceptance of a poor prognosis following PPC consultation.

Materials and Methods

Study Design and Setting

This retrospective audit study was conducted between January 1, 2021, and June 30, 2024, with approval from the Institutional Ethics Committee (IEC) board, and permitted a waiver of consent for our population. All children referred for PPC services to the department of pain and palliative medicine at a tertiary care cancer hospital in north-central India. The study involved reviewing the medical records of patients referred to and registered at the department of pain and palliative medicine. We included patients aged < 18 years, both OPD and IPD, and those referred to the department of pain and palliative services. Patients with incomplete medical records were excluded.

Study Procedure

All patients enrolled in the study from January 1, 2021, to June 30, 2024, were included. Retrospective data were obtained from electronic and paper medical records by a data entry operator. The statistician used appropriate statistical methods to calculate and interpret the data, thereby assessing the outcomes of PPC consultations in a specified region of north-central India at a tertiary cancer center.

Data Collection and Outcome Measures

We reviewed the patient's inpatient and outpatient clinic notes along with the electronic medical records to obtain data on (1) age, sex, and demographics, (2) clinical diagnosis, (3) palliative care consultations, (4) intent of treatment, (5) duration registered for follow-up, (6) best supportive care (BSC) declared patients, and (7) acceptance for poor prognosis. Audit outcome measures included demographic and clinical characteristics of children, reasons for referral, outcomes of referral, end-of-life care, counseling sessions, and bereavement support.

Inclusion and Exclusion Criteria

All pediatric patients referred to the department of pain and palliative services, outpatients and inpatients departments, and aged < 18 years were included in the study. Incomplete medical records were excluded from the study.

Primary and Secondary Outcomes

Primary Outcome

The primary outcome was prevalence and referral pattern of PPC consultations referred to specialist palliative care services.

Secondary Outcome

The secondary outcomes were as follows:

1. To estimate the follow-up frequency of registered PPC patients for PPC consultation in the given time period.

2. To estimate the frequency of teleconsultations and home care visits provided to registered PPC patients in the given time period.

3. To estimate family acceptance of a poor prognosis after PPC consultation and counseling, from documented electronic and medical paper records, to assess acceptance (these were preset open-ended questions used by a palliative care physician and psychologist).

4. To identify the survival rate of patients registered for PPC services.

Statistical Analysis

Descriptive statistics were used to summarize continuous variables, such as age, with the median (interquartile range [IQR]) and range or the mean (standard deviation), depending on the data distribution. The normality of continuous data will be assessed using the Shapiro–Wilk's test. For the analytical part, comparisons between categorical variables were performed using the chi-square test or Fisher's exact test, as appropriate. Comparisons of continuous data were conducted using Student's t-test or analysis of variance, based on the number of groups. Statistical significance was set at p < 0.05. All analyses, both descriptive and analytical, were performed using SPSS software (IBM SPSS Statistics for Windows).

Ethical Approval

This study was approved by the IEC on November 6, 2024, approval number-OIEC/11000795/2024/00002. Our IEC works according to the principles of the Declaration of Helsinki. This study is registered with the DCGI (Reg. Number ECR/150/Inst/UP/2021) and DHR (Reg. Number EC/NEW/INST/2022/UP/0093).

Results

A total of 456 pediatric patients referred to pain and palliative medicine or PPC were included in this study. During the study period (January 1, 2021, to June 30, 2024), 2,226 new pediatric patients were registered at the institute.

The prevalence of PPC consultations among children with cancer referred to specialist palliative care services was 20.5% (456 of 2,226). Overall, the year-wise prevalence showed an increase from 2021 (19.8%) to 2024 (22%), although there was a slight decrease in 2022 (18.4%), which can be due to coronavirus disease 2019 (COVID-19) and staff crisis in the hospital ([Fig. 3]).

Fig. 3 Line graph showing the trend of year-wise prevalence of pediatric palliative care patients.

The average age of the patients was 12 years (range: 0.8–17.5 years), with most patients diagnosed with hematological carcinoma (48.2%). The most common reasons for referral were BSC (31.1%), pain optimization (30.7%), and disease advancement counseling (28.3%). Almost 69% of patients were referred with good performance status. The frequency of follow-up was observed to be highest with one follow-up (53.3%), as most patients had difficulty commuting and lived far away in villages and small towns, and some lost contact once the advanced nature of the disease was confirmed. To address this, a teleconsultation service was initiated for far patients.

Overall, during the given timeline, 100 teleconsultations were performed for patients with PPC; 3.07% of patients had ≥ 4 teleconsultations. Eighteen home care visits were conducted, and more than two home care visits were provided to only one patient, accounting for 0.2% of the total registered patients. This is because home care services were initiated in a hospital in 2023, and it was challenging for the home care team to commute out of Varanasi. The number of pediatric patients enrolled for home care was low per geographical location, and this may be due to reference patterns and less awareness among other hospital staff. Of the families, 68.9% accepted the poor prognosis of the patients, and 81.1% were counseled. [Table 1] outlines the details of patient characteristics.

Table 1 Descriptive statistics of the patient characteristics

Variables	Values (n = 456)
Age, y
Median (IQR)	12 (7–15)
Range	0.8–17.5
Gender, n (%)
Male	299 (65.6)
Female	157 (34.4)
Diagnosis, n (%)
BST	123 (27%)
Pediatric solid tumor	99 (21.8)
Hematological carcinoma	220 (48.2)
Benign tumor	2 (0.4)
BST under evaluation	12 (2.6)
Frequency of F/U in PPC clinic, n (%)
1	243 (53.3)
2	94 (20.6)
3	36 (7.9)
4	13 (2.9)
5	13 (2.9)
6	9 (2)
7	6 (1.3)
8	5 (1.1)
9	4 (0.9)
10	5 (1.1)
> 10	28 (6.14)
Frequency of TC to registered patients, n (%)
0	356 (78.1)
1	58 (12.7)
2	16 (3.5)
3	12 (2.6)
≥ 4	14 (3.07)
Frequency of HC visit to registered patients, n (%)
0	449 (98.5)
1	3 (0.7)
2	3 (0.7)
9	1 (0.2)
Reason for referral, n (%)
BSC	142 (31.1)
Pain optimization	140 (30.7)
Counseling	129 (28.3)
BSC on OMCT	25 (5.5)
Disease-modifying treatment with palliative intent	20 (4.4)
Family acceptance of poor prognosis, n (%)
Yes	314 (68.9)
No	71 (15.6)
Call not received	49 (10.7)
Bargaining	22 (4.8)
Counseling done?, n (%)
Yes	373 (81.8)
No	83 (18.2)

Abbreviations: BSC, best supportive care; BST, bone and soft tissue; F/U, follow-up; HC, home care; IQR, interquartile range; OMCT, oral metronomic chemotherapy; PPC, pediatric palliative care; TC, teleconsultations.

Note: Values are represented as frequencies and percentages, unless mentioned.

[Table 2] outlines the details of patient survival after referral to the PPC department. The median follow-up duration was 29 months (IQR: 12–42 months). The minimum follow-up duration was 0 months, and the maximum follow-up duration was 42 months. Of the 456 patients, 413 died and 43 were censored. The mean overall survival time was estimated to be 3 months (95% confidence interval: 2.7–3.9 months). The 2-year overall survival rate of the cohort was 2.1 ± 0.8% ([Fig. 4]).

Table 2 Overall survival by Kaplan–Meier method for all patients

Overall survival
Mean survival time
Estimate	Standard error	95% confidence interval
		Lower bound	Upper bound
3.277	0.331	2.629	3.926

Fig. 4 Overall survival curve obtained from the Kaplan–Meier method shows the survival of the cohort.

Discussion

The global burden of chronic illness in children suggests the need for PPC. Palliative care for adults is now well established in developed countries and many parts of LMICs. There is a significant gap in adult and children's palliative care in every term. Providing PPC at a budding institute is challenging, where knowledge and attitudes toward PPC are not well established. Securing consistent funding for PPC programs is a widespread issue, seen even in wealthier nations[21]; the same challenge is faced by LMICs, and most of the time, funding is managed by charitable organizations, especially for home care, teleconsultation, respite, or hospice services. This retrospective audit is from an institute that is less than a decade old, and a dedicated palliative care center has been in operation since the beginning, followed by a dedicated specialist PPC OPD, which has been running continuously since late 2022. This study highlights the current state of the PPC landscape in a north-central Indian tertiary care cancer center. The prevalence of PPC referrals was 20.5% (456/2,226), which, although almost as good as that recorded in previous Indian reports, remains suboptimal. Prior studies have reported delayed and limited PPC integration. A study revealed that 86% of pediatric cancer patients received chemotherapy during the final month of life, while 78% were referred to palliative services only after the completion of cancer-directed treatment.[13] This indicates a delay in access to palliative care. Comparable patterns are seen across LMICs, where PPC is usually accessed in advanced stages, unlike high-income countries, where early referral is increasingly embedded into oncology care.[22] [23] The brief survival period (median of 1 month) after referral indicates that PPC was often introduced very late in the disease course, thereby limiting opportunities for sustained symptom management, psychosocial support, and family-centered care. Referral patterns were largely symptom-driven, with BSC, pain optimization, and counseling being the leading reasons. This reflects a reactive rather than a proactive approach, consistent with other LMICs. Currently, our referral pattern is increasing, and we are on the path of integrating PPC services into pediatric oncology. We observed a gradual increase in referral prevalence across the study period, suggesting growing institutional acceptance, which will benefit many children and caregivers.

However, barriers to effective integration in our setting included limited follow-up, low uptake of teleconsultation and home care services, and socioeconomic challenges such as long travel distances and financial constraints. System-level factors, such as restricted infrastructure, limited opioid availability, and the absence of structured referral protocols, further contribute to late referrals. At the provider level, inadequate awareness and training in PPC principles remain major challenges, while family-level barriers include poor health literacy and difficulty in accepting a palliative focus of care. Together, these factors perpetuate late engagement with palliative care services.

In this study, hematological malignancies comprised nearly half of referrals, consistent with national cancer registry trends where leukemia is the most common pediatric cancer according to ICMR-NCRP, 2020.[10] The leading reasons for referral were BSC (31.1%), pain management (30.7%), and counseling (28.3%), reflecting a symptom-driven approach. This aligns with prior LMIC literature,[24] while in high-income countries, PPC is more often integrated proactively for psychosocial support and decision-making.[18]

Addressing these gaps requires a multipronged intervention approach. Developing systematic referral triggers in oncology could help integrate PPC earlier. Strengthening home-based and telemedicine services may reduce the logistical and financial barriers for rural families. Expanding training and awareness for interdisciplinary oncology teams in communication and early referral for holistic care, alongside improving opioid access, can enable a good quality of life for both patients and caregivers. Finally, embedding bereavement support and family-centered decision-making processes will enhance the continuum of care. Proactive, rather than reactive, PPC integration has the potential to improve the quality of life, reduce aggressive end-of-life interventions, and support better outcomes for children and families in India.

Encouragingly, the year-wise prevalence of PPC referrals increased from 19.8% in 2021 to 22% in 2024, suggesting greater awareness and institutional acceptance, though a dip in 2022 may reflect systemic disruptions related to COVID-19 or staffing. Most patients (53.3%) had only a single follow-up, reflecting barriers such as long travel distances, socioeconomic constraints, and loss to follow-up after disclosure of advanced disease. Being one of the pioneer institutes in our region, we have started innovative models so that patient care can reach its maximum benefit, such as starting teleconsultation (n = 100) and home care (n = 18, since 2023), although these were underutilized so far, limited by infrastructure, awareness, geographic coverage, and hospital staff being in a resource-limited health care sector with volume of patient flow gradually increasing with the passing year. By contrast, mature programs in high-income countries show that home- and community-based models reduce hospital visits, strengthen continuity of care, and improve family satisfaction.[17] [26] [27] Expanding such models in India may reduce logistical and financial barriers while alleviating symptom burden.

Family acceptance of prognosis was achieved in 68.9%, and more than 80% received counseling, underscoring the role of effective communication. Similar studies demonstrate that sensitive discussions improve coping, facilitate shared decision-making, and reduce aggressive interventions at the end of life.[28] [29] However, nearly one-fifth of families did not receive counseling, indicating gaps in psychosocial support, which can be due to the nonavailability of clinical psychologists or a lack of approach from both sides.

Survival outcomes revealed a median survival of only 1 month and a mean survival of 3 months postreferral, with 2-year survival at 2.1%. These figures emphasize that most referrals occurred at terminal stages, missing opportunities for early symptom control and holistic care. Other Indian reports[12] described similar trends, while data from high-income countries show that early PPC referral improves quality of life, reduces invasive interventions, and may even prolong survival.[30]

Overall, this study underscores the urgent need to strengthen PPC service integration in pediatric oncology in India at the grassroots and community levels. Key challenges include late referrals, low utilization of home- and tele-based services,[31] and a symptom-driven approach. Addressing these gaps requires multipronged strategies: provider training, proactive referral protocols, expansion of community-based and telemedicine services, improved opioid access, and policy-level support.[32] Early, holistic integration of PPC can improve quality of life, support family-centered decision-making, and ensure more comprehensive cancer care for children in India.

Limitations and Conclusion

This audit demonstrates that although PPC referrals are gradually increasing, most occur late in the illness trajectory, thus limiting the scope of holistic support. Symptom-driven referrals, minimal follow-up, and underutilization of home- and tele-based services reflect systemic, provider, and family barriers. To bridge these gaps, early integration of PPC within pediatric oncology through structured referral pathways, community- and telemedicine-based services, improved opioid access, and enhanced provider training is essential. Proactive and comprehensive PPC integration can ensure better symptom control, strengthen family coping, and improve the overall quality of life of children with life-threatening conditions and their caregivers in India.

This study is limited by its retrospective design, which relies on the accuracy and completeness of the existing medical records. Some data, such as psychosocial outcomes and reasons for missed follow-ups, may be underreported or missing. Additionally, the findings were based on a single-center experience, which limits their generalizability. The low number of patients utilizing home care and teleconsultation services can reflect service unavailability and limitations in geographical coverage, rather than actual patient needs.

Overall, at the national level, the integration of PPC into health systems is strongly required by the presence of national policies that explicitly address it, whether as part of a broader palliative care framework or as stand-alone guidelines at each government institute for both oncology and nononcology chronic childhood illnesses, which leads to a step toward comprehensive childhood care.

Conflict of Interest

None declared.

Acknowledgments

The authors thank the patients, nursing staff, and palliative care team for their assistance in patient management and data collection. Special thanks to the data operator and statistician.

Authors' Contributions

P.S. conceptualized and designed the study, performed the literature search, and data acquisition. P.S. and A.P. performed data analysis and statistical analysis. A.S., A.P., and R.K.G. prepared the manuscript. A.S. and R.K.G. edited the manuscript. All the authors review the manuscript. All authors have read and approved the final manuscript. Each author believes the manuscript represents honest and original work.

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Publication History

Article published online:
20 January 2026