A doctor’s account | My little patients fight colossal battles

For seven years, Dr Mohammad Ishak Tayoob has been working as a paediatric palliative care physician, treating children with severe health conditions. He writes about the quiet resilience of his patients, and the joy in the midst of all the pain and uncertainty.

When a 19-year-old with osteosarcoma (an aggressive form of bone cancer) first came to our outpatient clinic, she was quiet and withdrawn, rarely speaking or making eye contact. But as time passed, and her illness progressed, the efforts of our team to build a connection slowly began to take effect.

During one of our conversations, she confided in us one of her deepest wishes: she wanted to be a poet. Intrigued, we encouraged her to bring some of her writing to her next visit. She did. And her words were beautiful. Moved by our appreciation, she continued to write, pouring her thoughts and emotions into poetry right up until her final days.

After her passing, her mother brought us the notebook she had written in. As we turned its pages, we were in tears. But in that moment, we also knew we had been given something priceless — a glimpse into her soul, and a memory we will always carry with us.

Palliative medicine is filled with profound moments and deeply human stories. As a paediatric palliative care (PPC) expert, I feel privileged to walk alongside patients and their families through some of their most challenging times. Often, we are inspired by their resilience — especially in children and young adults.

A 2017 study estimated that 21.6 million children worldwide require PPC, with 8.2 million in need of specialised services. In India alone, an estimated 1.6 million children need specialised PPC. However, the number of trained PPC specialists in the country remains critically low. This shortfall is largely due to limited awareness about the field and a lack of structured training opportunities. Encouraging more young paediatricians to pursue this speciality could significantly enhance the quality of life for children living with life-limiting and life-threatening conditions.

Making the transition

I have been working in the field of paediatric palliative care for seven years, across government institutions, NGOs, trust-aided organisations, and the corporate sector. However, I began my career as a general paediatrician in 2015 and initially worked as a consultant in a corporate hospital.

I had always been interested in intensive care and wanted to care for children with complex, critical needs. During this period, I came across a job opportunity at a tertiary cancer centre. While exploring whether to take it up, I learned about the existence of a dedicated paediatric palliative care programme at MNJ Cancer Institute and Regional Cancer Centre in Hyderabad. It was something I had never heard of before. When I observed the services provided by their team, I was deeply moved and
intrigued. This experience inspired me to join their fellowship programme instead of taking up the ICU job.

I had quite a few reservations when I decided to enter this field. At the time, I was doing well as a consultant paediatrician, so making a shift felt risky. I often doubted whether it was the right decision at that stage of my career. A few of my seniors discouraged me from joining the fellowship, and even my parents advised me to think carefully before making the change.

Initially, I planned to pursue paediatric palliative medicine part-time after completing the fellowship. However, over time, it became my full-time passion.

Expanding work

My experience in PPC has evolved significantly over the years. When I first joined, our focus was on providing palliative care for children with cancer. Most of our patients came from the MNJ cancer institute. Later, we expanded our work to include
neonatal palliative care at Niloufer Children’s Hospital, a tertiary paediatric hospital located just across the street. Gradually, we also began providing holistic care across all of their sub-specialities.

My fellowship coincided with the first wave of COVID-19, which brought many challenges. Despite that, we continued advocating for PPC and worked to increase referrals across both hospitals. Once the COVID-19 waves subsided, our collaborations strengthened, and we were able to reach and support many more families.

My day usually begins with ward rounds, where I visit children and their families in the ICU and inpatient wards. After completing the rounds, I move to the outpatient department (OPD) service within the hospital. In addition to clinical work, much of my time is also devoted to advocacy and knowledge-sharing — conducting sensitisation sessions at the workplace and engaging with other platforms to promote awareness about PPC.

Courage in adversity

Some experiences in long-term care are especially moving. Recently, a nine-year-old patient recovering from transverse myelitis (a rare neurological disorder) — and the resulting paralysis — found the courage to return to school using a wheelchair we had arranged for him. It took months of encouragement, repeated home visits, and gentle reassurance to help him face his fears: fears of no longer fitting in, of being unable to keep up, and of being ridiculed. We also engaged with school staff to ensure they understood his needs and could support his reintegration into the classroom. Chronic illnesses often bring a host of social, economic, physical, and emotional challenges — ones that the palliative care team walks alongside families to navigate.

Perinatal and neonatal palliative care present a distinct set of challenges and responsibilities. In many cases, we support expectant parents as they come to terms with a prenatal diagnosis indicating that their baby may be born with a life-limiting condition. In other instances, the diagnosis may not be immediately fatal but may involve a chronic, inoperable, or incurable illness requiring ongoing medical management.

These scenarios demand complex, multidisciplinary decision-making, often under intense emotional stress. The palliative care team plays a critical role in guiding families through this process — providing clinical insight, emotional support, and continuity of care. Many of these infants transition to long-term home-based care, where palliative services continue to support quality of life and family wellbeing.

One such case involved a two-day-old infant diagnosed with epidermolysis bullosa (a group of genetic disorders characterised by extremely fragile skin). The baby was referred to our team for pain management. From birth, the baby experienced severe pain due to extensive blistering and wounds caused by the condition. Oral morphine was initiated for effective analgesia, with dosages carefully titrated according to the child’s evolving needs. Over time, with consistent symptom management, wound care, and supportive interventions, the development of new lesions was significantly reduced, and existing lesions were better managed.

Today, the child is thriving at one year of age. Although epidermolysis bullosa remains an incurable condition associated with lifelong morbidity, the ongoing involvement of the palliative care team has helped the family navigate the medical, emotional, and practical challenges that come with such a diagnosis. The case reflects how early palliative involvement can play a crucial role not only in improving quality of life but also in empowering families to provide informed and compassionate care at home.

Processing grief

Very often, there is what we call ‘collusion’ between the parents and the child — a silent agreement not to talk about the illness directly. Parents try to protect the child from the truth, and the child, sensing the parents’ distress, pretends not to know.

In my experience, children cope better than adults when they are spoken to honestly and with sensitivity. They want to know that they are loved and that they will be
cared for till the very end. Children are incredibly perceptive — they usually sense when something is wrong with their bodies. When we gently explore their understanding of the illness and provide age-appropriate, truthful information, it helps ease their fear and anxiety. Above all, children want reassurance — that they will not be forgotten, and that they will be missed once they are gone.

Every parent and family copes differently. Our primary role is to communicate clearly, honestly, and compassionately — this allows families to open up and come to terms with their child’s condition.

Parents often need reassurance that they have done everything possible for their child. Many just need to hear, “You are good parents.” When parents are unable to express themselves or communicate their emotions, they tend to struggle more with grief.

We have also seen that when children and parents are able to talk openly about the illness, both cope far better. Those honest, meaningful conversations — though difficult — often become precious memories later.

Cost of care

Palliative medicine is fundamentally about  patient-centred care. It focuses on the needs of both patients and their families, and in doing so, it often helps reduce medical costs — by avoiding unnecessary hospital admissions, futile interventions, and ensuring effective symptom management.

In India, most palliative care is still provided through NGOs and charitable trusts. Sadly, a large number of children never receive palliative support because corporate hospitals have yet to fully integrate such services across the country.

Healthcare is rarely free in private settings, but every hospital — public or private — should have access to palliative care specialists. That will make a significant difference. No patient should be denied comfort and dignity simply because of financial constraints.

Emotional strain

Just like me, most palliative care physicians experience significant emotional strain. Many of our patients are referred late in the course of their illness, with complex needs and limited time left. We deal daily with difficult conversations, ethical dilemmas, and situations where death is imminent. Ideally, every palliative care team should have regular debrief sessions after a patient’s death — to reflect on how it affected the team, what went well, and what could be improved. It’s essential to acknowledge our emotions and support one another.

Counselling or supervision should absolutely be available for any healthcare professional dealing with end-of-life care.

We are all trained in medical ethics, but the true test is in practicing ethically and compassionately. Good communication skills are vital — no matter which branch of medicine one works in.

Accepting the inevitable

My mind often goes back to a 12-year-old boy with inoperable cardiac disease. He was aware of his condition and so were his parents. But they avoided talking about it believing it would spare the other pain.

When I spoke with the boy, he said he did not want to upset his parents. Meanwhile, his parents were planning to take him to another hospital, thinking they still had time.

After we gently discussed the reality with his father, he finally opened up to his son, embraced him and asked about his last wish. The boy said he wanted to die while offering his daily prayers.

That day, father and son spent every moment together — time that would otherwise have been spent arranging another hospital transfer. The next morning, the boy passed away peacefully during their morning prayer. His father later told us he was deeply grateful for that final day together.

Moments like these remind us that while we cannot always add days to a child’s life, we can certainly add life to their days.