Pediatric palliative care practitioners from India, Qatar and the US share their perspectives on why end-of-life care for children matters – as does the need to discuss it.
“Our entire team had rehearsed exactly what to tell the five-year-old girl,” recalls Dr. Lulu Mathew, a pediatric palliative care physician who works at the Institute of Palliative Medicine in Kozhikode in south India. “The child was to have her leg amputated the next day, due to an aggressive malignancy, and we wanted to make sure that she was aware of what was going to happen.”
After explaining why the surgery was being done, Dr. Mathew leaned in, and gently asked the girl if she had any concerns. The little girl shook her head. Then, as an afterthought, her eyes welling up, she asked: ‘If you cut my left leg off, where will I wear my anklet?”
“If I had to choose one incident that defines the essence of pediatric palliative care, it has to be this,” says Dr. Mathew. “It’s a world where the innocence of a child links faith, hope, and courage with pain and despair, to inspire compassion.”
Palliative care in children
Palliative care requires practitioners to improve the quality of life of patients and their families facing problems associated with life-threatening illness. This is done through the prevention and relief of suffering by early identification, and assessment and treatment of pain and other physical, psychological and spiritual concerns.
“That level of interaction runs deeper when the patient is a child,” says Dr. Ibrahim Janahi, Chair of Medical Education and Division Chief of Pulmonology at Sidra Medicine, a member of Qatar Foundation. “That child is a dependent who has absolutely no control over the treatment or its outcome – decisions are made entirely by parents and medical caregivers.”
Parents are often torn between what they perceive is required of them by their religion, and their child’s medical team.
According to Dr. Janahi, this dependency creates a range of religious, ethical and moral questions: the use of opioid pain-killers; the need for – or futility of – aggressive therapy aimed at cure; how long young patients close to death should remain in intensive care units, separated from their parents and loved ones; and whether and when they should be placed on or taken off a ventilator.
The point of convergence – and why it needs to be discussed
“Parents are often torn between what they perceive is required of them by their religion, and their child’s medical team,” says Dr. Janahi, who is also Professor of Clinical Pediatrics at Weill Cornell Medicine-Qatar. “For instance, one of the beliefs in Islam is that we don’t own our souls; God owns our soul.
“In which case, is extending the life of a young patient by using a ventilator a sin? And is taking a young patient off a ventilator – even when medical evidence suggests that there is nothing more to be done in terms of care or cure – going against Islamic religious beliefs? Again, when should cure-focused treatment be replaced by a care-based approach?”
The pediatric pulmonologist says that when it comes to such questions, the realms of medical care and religion converge more than they diverge – a point which an upcoming conference to be held in Vatican City, is set to emphasize.
This conference is crucial because it will bring religious leaders, and geriatric and palliative care experts and advocates together with one shared aim – to help patients face terminal illnesses in as humane and painless manner as possible.
The symposium, titled Religion and Medical Ethics: Palliative Care and the Mental Health of the Elderly, will take place from December 11-12 and is co-hosted by the World Innovation Summit for Health (WISH), an initiative of QF, and the Vatican’s Pontifical Academy for Life.
“This conference is crucial because it will bring religious leaders, and geriatric and palliative care experts and advocates together with one shared aim – to help patients face terminal illnesses in as humane and painless manner as possible.”
Unique concerns and dilemmas
Pediatric palliative care presents unique concerns: patients keep growing, are completely dependent of their caregivers, and, due to their youthful resilience, often live with debilitating conditions for extended periods of time.
“I had a young patient who was born with a devastating muscle disease, rendering him completely paralyzed,” says Dr. Janahi. “Currently, he’s been on a ventilator for the past 20 years, because his father chose to keep him alive.
“Today, I have yet another young patient with that same condition. But my conversations with that child’s parents are totally different: due to advancements in medical care, I can tell them it can be treated through gene therapy. Yet the patient who has been bed-ridden for 20 years is not eligible for it, because he is too old for that.
“This poses a dilemma when I have to break the news about two differing outcomes for the same treatment to two sets of parents.”
Young children have their own way of deciphering the presence of God in their lives, especially while going through a traumatic experience such as a terminal illness.
Spirituality in pediatric palliative care
Practitioners are quick to point out that spirituality is a core component of palliative care – even for pediatric patients. Any inability to address this is seen as providing substandard care.
Dr. Justin Baker, who heads the Quality of Life for All program at St. Jude’s Research Hospital in Memphis, Tennessee, says that young children have their own way of deciphering the presence of God in their lives, especially while going through a traumatic experience such as a terminal illness.
“When it comes to palliative care, the common enemy is suffering,” says the US physician, who is a world-renowned pediatric palliative care advocate. “Spirituality plays an important role in helping a person face suffering, be it physical or emotional.”
A child’s answer to ‘Why me, God?’
Dr. Baker says that children – like adults – tend to question their suffering; they too have moments when they think ‘Why me, God?’. “One day, I spent time alone in a room with a young boy who was dying due to neuroblastoma,” he says. “He had specifically told his parents that he wanted to chat with me. That morning is etched in my mind because I had the most intense conversation on spirituality – with a 10-year-old.
I see the healing and calming effects that spirituality can bring palliative care patients. And it’s precisely for reasons such as these that the WISH-Vatican conference is significant.
“That young patient told me how he had struggled to accept his condition; how he realized that suffering was part of life; that his disease didn’t take away the goodness of God; that because of his suffering he had the opportunity to speak to so many people – and how understanding his relationship with God conceptualized the meaning of his illness.
“Children are wise beyond their years, and as I sat listening to that young boy who was too weak to even move, share his perspective on his pain and illness, I couldn’t help feeling amazed and humbled at his wisdom and knowledge. It’s moments like those that have a profound impact on physicians like myself.
“I see the healing and calming effects that spirituality can bring palliative care patients. I’m sure every palliative care practitioner would say the same. And it’s precisely for reasons such as these that the WISH-Vatican conference is significant.
“Spirituality and palliative care go hand in hand, and as such complement each other. It makes sense that experts from both fields would get together to help young patients with life-limiting conditions or end-of-life-needs live their lives in a beautiful and dignified manner.”
More than adults
Discussions on pediatric palliative care figure prominently on the agenda of the upcoming conference in the Vatican, and judging by global statistics, these discussions cannot come soon enough: according to WHO, 300,000 children between the ages of 0-19 are diagnosed with cancer per year. Other studies show that over 20 million children are in need of palliative care but don’t have access to it.
If the upcoming symposium can …………..increase the awareness of the need for pediatric palliative care, its effects would go beyond the walls of the Vatican to help millions of children and their families.
There are numerous reasons: lack of awareness of the benefits of pediatric palliative care; a dearth of pediatricians willing to offer their services; the notion that palliative care equates to a death sentence because there is no cure for the young patient; and an inability to accept that children, irrespective of the prognosis of the disease, deserve to live a full life. This is why physicians such as Dr. Mathew say that discussions are necessary.
“If the upcoming symposium can go beyond breaking religious and cultural taboos, and increase the awareness of the need for pediatric palliative care, its effects would go beyond the walls of the Vatican to help millions of children and their families,” she notes.
Children are not miniature men and women; they are more than that.
The physician is succinct as she says that anyone who doubts the need for pediatric palliative care should have been present in the room a few years ago when she was examining a three-year-old patient who was close to death, due to a brain tumor.
“During the examination, the young girl cupped her mother’s face in her palms and said, ‘Don’t cry, Amma (mother)’,” recalls Dr. Mathew.
Children are not miniature men and women; they are more than that.
“That statement is a reaffirmation: children are not miniature men and women; they are more than that. They possess a maturity that surpasses that of any adult, simply because they see things with a level of clarity and compassion that we are incapable of.
“Their dependency on adults are what makes them special – and not giving dying children and their families the support they need, when they need it, amplifies the fact that, as a society, we have a long way to go.”