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The palliative care centre at the Institute of Child Health and Hospital for Children, Egmore.
CHENNAI: A palliative care centre for children from socially and economically weak backgrounds suffering from terminal illnesses will be functional at the Institute of Child Health and Hospital for Children, Egmore.
Being set up by Dean Foundation, Hospice and Palliative Care Centre, the new unit will have professional palliative care specialists tending to children, helping them manage their pain medically; and following up with home visits, once the child is discharged.
“Although a number of successful adult combined pain and palliative care programmes exist worldwide, integrated paediatric pain and palliative care services are rare, especially for children,” says Deepa Muthiah, chairman, Dean Foundation. She adds that little is known about the optimal context in which to provide care for the children who die every year of terminal conditions.
Pediatric hospice care is frequently not available; not chosen by the family or health care providers. In response to a critical need to move beyond the disease oriented, hospital-based model with a lack of continuity between hospital and community-based medical services, the Dean Foundation developed an innovative program of advanced care planning and care coordination.
The first step is the establishment of an Out Patient and In Patient unit in the space provided by the Institute of Child Health, Egmore. Beginning with five beds, the Centre hopes to augment the capacity based on the demand from patients and flow of philanthropic support.
A doctor will direct the treatment plan. Service will be rendered on an out-patient basis. Those who need to be admitted will be housed in the specially done-up second floor IP unit admitted as for many days as it takes to stabilise their distressing symptoms. “Parents will prefer to take their children home if nothing more can be done for them. So we facilitate this process. If care is required at home after this, our team will do the needful,” Ms. Muthiah.
The Foundation had to go through the usual process of finding specialists, both doctors and nurses to work for the new unit. “It is not as easy a task as you would imagine. There is a huge dearth of trained palliative care specialists and even doctors willing to work with palliative paediatric care,” she adds. Finding funds to pay the personnel and take care of daily running expenses is another huge task.
Krishnan Swaminathan, endocrinologist based in Scotland, is one of the funders for the project. His organisation, Idhayangal, co-founded with three other Indian doctors who passed out of Madras Medical College, now in the United Kingdom, has set aside 5000 Pound Sterling for the Paediatric Palliative Care Centre at ICH.
“Our aim is to improve the lives of underprivileged children in India from the medical point of view. Palliative care is becoming a focus area. Even if you take the ICH, every day there are at least four or five kids with terminal illness who are asked to go home. They have no treatment for pain, counselling, emotional support or a peaceful death,” he explains. With a teaching institution, the stature of the ICH coming forward to allot space, he says it is a sign of hope for a possible policy on paediatric palliative care, as exists in the West.
The Principal Secretary, Health, V. K. Subburaj, says, “This is a first-of-its-kind service being provided in a paediatric hospital, certainly the first within a government hospital in Tamil Nadu. It is a great first step and we hope to follow up on that.”
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