World Hospice and Palliative Care Day:
IAPC’s Special Feature on
Paediatric Palliative Care-9
About the author:
Ms. Poonam Bagai is a Cancer Survivor and the Founder Chairman at Cankids Kidscan – National Society for Change for Childhood Cancer in India. She is also the Vice Chairman at Pallium India.
Subhita, the Cankids Pediatric Palliative Care Center located in close proximity to AIIMS and Safdarjung Hospital, New Delhi, is India’s one and only stand-alone Pediatric Palliative Care Center (PPCC) catering to children with childhood cancer malignancies. A vital service of Cankids Kidscan – National Society for Change for Childhood Cancer in India (www.cankidsindia.org), the Center was set up with the dual goal of filling the void of much needed pediatric palliative care services for children with cancer in Delhi NCR, and to serve as the flagship and hub to plan and implement and integrate palliative care, pain management and symptom relief into pediatric oncology treatment, care and support across Cankids Hospital Support partnerships at childhood cancer treating centers across India.
Our center was set up in 2012 as a 10 bedded Nursing Home under the Delhi Government Nursing Act to offer In-patient services and Out-patient OPD. As time progressed, we commenced our ambulatory care services in 2014. In 2016, the DCGI granted us our morphine license; and in 2017, we inaugurated our formal social support OPD.
In March 2020, with the onset of the COVID-19 pandemic, we noticed that several pediatric patients and their families were left stranded due to the imposition of the sudden nationwide lockdowns. Our Center promptly responded by further expanding our capacity to include an additional 10 beds for the ‘Home Away from Home’ (HAH) services, to provide safe shelter and accommodation to those families stranded in Delhi, and to also include under our supervision, the other 2 HAHs functioning in Delhi at Kotla and Kalawati Saran Children’s Hospital. The inclusion of the 2 HAHs expanded our In-patient services to render care for 50 families at any given point in time. We were and are continued to be supported in all our endevours by Mannkind Charitable Society from Canada, Indorama Foundation and several other local community donors and volunteers. All our services are offered free of cost.
Our services are managed professionally by an expert team of 26 people including palliative care trained physicians, nurses, nursing aides, social workers, psychologists, a physiotherapist, a dietician, patient navigators and community health workers.
‘Subhita’, a Hindi word, means palliation, alleviation, balm, cheer, comfort, easement, respite, rest, succour, support and solace. All of these services are offered at our PPCC.
Children are referred to the Center, by their treating doctors or the Cankids social support teams stationed at childhood cancer hospitals sometimes even prior to admission at the main treating center, for pain management or symptom control. The others get admitted for pre and post-op bone surgeries, chemo, radiation and BMTs, for appropriate physiotherapy, for psychological and therapeutic interventions to prepare the children and families to handle the outcome of their cancer treatment (limb loss, disfigurement, relapse or terminal illness), and for end-of-life care. While at our Center, the family is provided the necessary psycho-social support, engage in group therapies, have access to nutritious meals with nutrition management and schooling for the child.
Our periodic multi-disciplinary team meetings and our work in tandem with the child’s treating team ensures that our palliative team appropriately incorporates the required palliative care interventions into the child’s Care Plans which are modified regularly to reflect changes in treatment.
While some families opt to stay on in the city, during the course of the child’s treatment or end of life, there are several others who wish to return to their home. For those who wish to go back home, they are prepared, trained, provided with medication and comfort bags that aid to keep the child comfortable, and also provided with wheel chairs, crutches or any and other equipment that the child might need for a comfortable journey back home. Our team continues to stay in touch with the family, who always, have the option of returning to the Center when needed.
Over the past 4 years, we have provided 725 children with In-patient and Outpatient palliative care services, provided 36130 antibiotic injections to 2235 children who have received ambulatory care services and supported 4917 children through our Social Support OPD with an average of 8 episodes of assistance. We have been able to also provide relief to 259 children by administering 180290 mg of morphine.
We are proud to declare that over the past 8 years ‘Subhita’ has grown and evolved in the right trajectory as we now comply with the WHO Essential Package of Pediatric Palliative Care and Symptom Relief.
We strongly recommend more Civil Society Organizations (CSOs) and hospital institutions working in similar fields to develop similar Pediatric Palliative Care Centers to cater to the National demand for such services. We are more than happy to collaborate and offer guidance to those interested to work in this space.