Author: Dr. Pallavi Singh, MD (Palliative Medicine) Assistant Professor, Pain and Palliative Medicine Mahamana Pandit Madan Mohan Malaviya Cancer Centre & Homi Bhabha Cancer Hospital, Varanasi
In the vibrant yet challenging landscape of pediatric oncology, the need for holistic, compassionate, and interdisciplinary care is more critical than ever. As a primary tertiary cancer care center in the north-central region of India, MPMMCC, and HBCH, Varanasi is a high-burden patient intake hospital that is less than a decade old, and is also an ESMO-designated center committed to delivering comprehensive cancer care to both adult and pediatric patients. However, similar to many institutions in low- and middle-income countries (LMICs), awareness and integration of pediatric palliative care (PPC) remains limited, particularly among non-physician care providers.
Initially, I envisioned a broader outreach project aiming to raise awareness about pediatric palliative care among local pediatricians and PHC teams across Varanasi and its neighboring districts. However, during my early groundwork, I had a moment of realization: before expanding externally, the journey began at home.
Despite the availability of palliative services in our hospital, I found that many nurses, social workers, patient navigators, and even caregivers had little or no understanding of the scope and benefits of pediatric palliative care. For some, PPC were synonymous only with end-of-life support. For others, this has remained a foreign concept. This awareness gap directly affects timely referrals, interdisciplinary collaboration, and caregiver participation, which are essential components of effective PPC.
Therefore, I initiated an in-house awareness campaign tailored to our interdisciplinary staff and caregivers. The goal was to lay a strong foundation for knowledge, empathy, and shared responsibility for pediatric patients under our care.
The awareness sessions were designed as interactive, separate structured programs for interdisciplinary teams (nurses, medical social workers, patient navigators, etc.) and caregivers. They cover the core principles of pediatric palliative care (PPC), highlighting how it differs from adult palliative care, and address common myths, cultural fears, and misconceptions that often hinder timely referrals.
Key components include basic symptom management, communication skills for handling difficult conversations, emotional self-care, and navigating ethical challenges in pediatric care. A strong focus is also placed on caregiver empowerment, helping families understand their vital role in supporting their child’s quality of life. Notably, caregiver sessions have been especially impactful, transforming perceptions of palliative care from a last resort to a valuable support system. These sessions not only build trust between families and the palliative care team, but also equip caregivers to serve as advocates in their communities, promoting awareness and early access to PPC services in oncology and non-oncology patients.
Progress So Far
To date, four caregiver awareness sessions have been conducted and one structured training session has been held for nurses, patient navigators, and medical social workers. In total, 135 caregivers were sensitized to pediatric palliative care principles and 78 members of the interdisciplinary healthcare team were trained in PPC awareness and communication skills.
These efforts are beginning to yield a visible shift in mindsets and practices. Nurses now recognize when to refer them early. Patient navigators learn to guide families to PPC clinics. Social workers engaged more effectively with their caregivers. Importantly, caregivers themselves expressed gratitude for the psychological, emotional, and practical support that they did not know was available.
We measured success through pre- and post-training assessments, feedback forms, and tracking referral patterns. But beyond numbers, the true success lies in the smiles of comforted children, the relief in a caregiver’s voice, and the seamless collaboration between departments
Looking Ahead
This internal capacity-building effort is the first step. Once our own institutional community becomes well-versed in PPC principles, our vision remains to extend this initiative to a wider region. By sensitizing local health workers and pediatricians, we can ensure that no children with cancer in our district are denied the supportive care they deserve.
Ultimately, pediatric palliative care is not just a specialty; it is a philosophy of compassion, communication, and connection. By nurturing awareness from within, we are planting seeds of change that will bloom well beyond our hospital’s walls.
“Sometimes the smallest patients teach us the biggest lessons. All they need is a team that listens, cares, and walks beside them—even when the cure is no longer the goal.”
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