Palliative Care

Chairs

Head of Department

Pediatric Palliative and Supportive Care Unit Bai Jerbai Wadia Hospital for Children Parel, Mumbai

Paediatric palliative care consultant

Pain Relief and Palliative Care Society, Hyderabad

Goal Statement

To establish pediatric palliative care programs in all pediatric cancer centers.

Key Focus Areas

  • Map all existing pain and palliative care services in India.
  • Publish a position statement on palliative care.
  • Train and educate health care professionals on palliative care.
  • Develop guideline for palliative chemotherapy and palliative radiotherapy.
  • Develop SOPs on PPC services.

Glimpses of Work

Context

This position statement for palliative care in pediatric oncology will address gaps in palliative care in the country by training, developing guidelines and establishing joint clinics with focus on paediatric palliative care.

Purpose
  • The palliative care sub-committee did literature study of the work done on the position statement globally.
  • A draft position statement is being made by 11 members and will be circulated for feedback.
  • Timeline - Within three months, the position statement for palliative care will be coined.
Status/Next Steps

The first guidelines for integrated pediatric palliative care in oncology were published in 2013. Inadequate emphasis and resources have meant that there are currently significant gaps in the delivery of integrated PPC for this cohort in our setting. This position statement reiterates the need for collective resolve and commitment and gives a roadmap to making effective palliative care a reality for every child and adolescent with cancer in India.

Context

India bears 20% of the global childhood cancer burden, with survival rates remaining below 30%. This highlights a significant unmet need for palliative care services for children with cancer, especially given the lack of standardized paediatric palliative care across the country.

Evidence shows that early implementation of Pediatric Palliative Care (PPC) in oncology settings significantly improves the quality of life for both the child and their family. One of the most effective and widely adaptable approaches is the Integrated Model, which embeds the PPC team within oncology and haematology services, enabling routine and seamless referrals for supportive care needs.

Purpose

To introduce and strengthen the early integration of palliative care within pediatric oncology services, the ICCI Palliative Care Taskforce proposes a structured training programme for Pediatric Hemato-Oncology physicians.

The goal is to build capacity for Integrated Pediatric Onco-Palliative Care services across India.

The Palliative Care Taskforce of the Indian Childhood Cancer Initiative (ICCI), with endorsement from the PHO Chapter of the Indian Academy of Pediatrics, plans to launch a Virtual Training Programme in Pediatric Palliative Care for young Pediatric Hemato-Oncologists in India.

The PHO Chapter has recommended conducting the training twice annually. The first batch is proposed to begin in December 2025, with evaluation of the initial response guiding future batches.

Status/ Next Steps
  • A 9-week virtual course titled Essentials of Pediatric Palliative Care for Pediatric Hematology-Oncology Physicians is scheduled to commence in December 2025.
  • Certificates of completion will be jointly issued by:
    • President, IAP-PHO Chapter.
    • Secretary, IAP-PHO Chapter.
    • Co-Chairs, ICCI Palliative Care Taskforce.
  • The Taskforce intends to offer this training twice a year, beginning 2025–2026, to steadily build national capacity in pediatric palliative care.

Context

Comprehensive survivorship data is essential to understand long-term outcomes and improve the quality of care for childhood cancer survivors in India. However, existing pediatric cancer registries face challenges such as inconsistent data capture, limited follow-up information, and inadequate representation from all regions.

Purpose

The expansion of the INPHOG Childhood Cancer Survivorship (C2S) study aims to strengthen national pediatric cancer registration by improving data capture and entry into the national registry. The objective is to broaden the scope of survivorship registries to enable consistent, long-term follow-up and enhance the quality of survivorship care across India.

What We Have Done

The INPHOG C2S study has been expanded to collect data from diverse regions and treatment centers across the country. Currently:

  • INPHOG has 58 member institutions across India.
  • C2S study participation: 29 centers are actively contributing survivorship data.
  • ICCI support: 6 staff members supported by ICCI are engaged across nine centers to facilitate data collection and coordination.
Next Steps
  • Continue strengthening data entry and monitoring systems to ensure comprehensive and high-quality survivorship data.
  • Work towards integrating survivorship data within a sustainable national framework to support policy and program development for childhood cancer care.

Context

Rehabilitation is a critical yet often under addressed component of comprehensive childhood cancer care. It plays a vital role in supporting patients and survivors to regain physical, psychological, and social well-being post-treatment. However, the absence of a structured, integrated rehabilitation framework poses challenges in delivering holistic survivorship care across India.

Purpose

The initiative aimed to initiate dialogue and build awareness on the importance of rehabilitation in pediatric oncology. The objective was to bring together diverse stakeholders to explore opportunities for collaboration, identify key gaps, and lay the groundwork for developing a comprehensive national rehabilitation framework.

What We Have Done

An introductory session on rehabilitation was conducted, engaging over 85 participants, including survivors, parents, doctors, NGOs, and healthcare professionals. The session focused on raising awareness about the need for structured rehabilitation services and setting the tone for continued engagement. It fostered collaboration, dialogue, and knowledge sharing among stakeholders to strengthen future rehabilitation efforts.

Next Steps
  • Develop a roadmap for an integrated national rehabilitation framework for childhood cancer survivors.
  • Facilitate follow-up workshops and expert consultations to define key components and implementation strategies.
  • Promote cross-sector collaboration among hospitals, NGOs, and rehabilitation professionals to strengthen support services nationwide.
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