“Don’t forget the children!” was the call of Joan Marston, founding member of the International Children’s Palliative Care Network, as she championed for children to avail of palliative care. This approach has always been associated with end-of-life care for adults; however, it focuses on improving the quality of life of those with severe, long-term illnesses, and the inclusion of children is often a footnote and needs extra emphasis so as to not leave them behind.
What is Paediatric Palliative Care (PPC)?
Paediatric palliative care is a specialized approach for children with serious, long-term illnesses. According to the American Academy of Paediatrics, palliative care is offered at diagnosis and continued throughout the illness, whether the outcome ends in cure or death.
Much like palliative care for adults, PPC focuses on relieving young patients’ and their families’ physical, emotional, and psychological suffering. A PPC team generally consists of a doctor with specialized training in paediatrics, a nurse, a counselor, a physiotherapist, and sometimes a play/ music/ art therapist who works alongside a medical team, offering support and comfort. While the goals of PPC differ depending on the diagnosis, the team provides support during health crises while also helping address the challenges of daily living. This includes managing symptoms like pain, nausea, and fatigue through medication, other therapies, and emotional and psychological support, as this can be a difficult time for patients and their families.
PPC also strives to improve communication between medical teams and families, ensuring that everyone involved understands the child’s condition, prognosis, and treatment options. It empowers families to make informed decisions about their child’s care and align the care plan with their values and goals.
The Need for Paediatric Palliative Care
A study published in the ‘Journal of Pain & Symptom Management’ (2017) estimated the global need for PPC to be 21.6 million. In India, it is estimated that 1.6 million children need specialized paediatric palliative care. When the study was published, there were very few trained PPC specialists in India. However, with new programs and initiatives, the numbers are slowly growing.
Paediatric Palliative Care in Action
Pallium India came across a year-old boy named Sridhar*, diagnosed with renal failure attributed to posterior urethral valve obstruction. The family is not well-off, and the mother struggles with her health issues. Post a detailed assessment, our team now provides them with free medication for Sridhar, travel allowance for nephrology consultation, and home care from a trained PPC team. The team also offers support for the rest of the family by providing them with a monthly food kit.**
Don’t Forget the Children
It is hard to think about children being severely ill, perhaps even potentially facing death, and many of us aren’t ready to face that reality. But children fall ill and must deal with difficult situations, and since they often do not have a voice, we must speak up for them and ensure that their right to PPC isn’t taken away from them and no matter what the odds they can have the best quality of life possible.
*Name has been changed to protect their identity.
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