How do you tell a parent that their child is dying? That there’s nothing else to be done? How do you convince a parent to let their child go in peace?
These are questions that doctors and psychologists in the field of paediatric palliative care grapple with on a daily basis. Palliative care is generally thought of as ‘end-of-life-care’. This is an inaccurate description, says Dr MA Muckaden, professor and officer-in-charge of the Palliative Care Clinic at the Tata Memorial Hospital.
“It’s more about providing a decent quality of life for patients who have a limited time to live.” In India, palliative care, especially for children, is rare. This is partly due to a lack of awareness and partly the lack of clinics that specialise in the field. A study by the Tata Hospital revealed that there are about 10lakh children who require palliative care in Maharashtra. And only one clinic (the one in Tata hospital) devoted to it.
The International Children’s Palliative Care Network (ICPCN), a UK-based organisation, is trying to change that statistic. In conjunction with the Tata hospital and Help the Hospices (another UK-based non-profit organisation), a mentorship programme has been started to provide guidance and training for other centres that wish to have paediatric palliative care units. They’ve already tied up with Sion Hospital and are trying to get another unit launched in Jawhar, a small town in Thane.
It’s a double-pronged initiative. There is a push to get palliative care for children mandated. The proposal has been submitted to the state. Efforts are underway to set up clinics and educate doctors, nurses, social workers as well as the general public about the importance of palliative care for children.
There are hurdles though. Palliative care is not included in any medical curriculum, though the Medical Council of India (MCI) has agreed to introduce it as a post-graduate course next year. It’s also a field that doesn’t pay very well. But the biggest hurdle is a profound lack of awareness.
“It’s very difficult for people to accept the death of a child. They keep insisting on further treatment even though they might not be of any use,” said Joan Marsten, chief executive officer of ICPCN.
“And children, especially in India, have no say. If a child is in a lot of pain, they don’t have an option of stopping their treatment. No one listens to them. That’s the job of our counsellors. To listen to the children, facilitate communication with their parents, and finally advise the parents on how to deal with the impending death of their child,” said Dr Muckaden.
“Watching a child die is a terrible thing. None of us, who haven’t been in the position before, really know what the family is going through. Our job is to listen to them and make them accept the inevitability of death. We make sure that the last days of the child passes as comfortably and in as much happiness as possible,” says Niranjan Parekh a volunteer who has been with the Tata hospital for 17 years. “This is why palliative care, especially for children, is so important.”
