A current update on Children’s Palliative Care in India

Dr. Mary Ann Muckaden, Mumbai

At the outset, let me emphasise that there is a lot of work going on in India for Paediatric Palliative care (PPC) and I may not do justice to it all, so apologies.

As with the branch of Paediatrics when it began, Joan Marston stated that ‘‘We must never forget the children”, when she started the International Children’s Palliative Care Network. The PPC, as a separate unit, began in Kerala and Delhi, and has now spread to many places simultaneously. Most Adult Palliative Care Centres, provide quality care to children and their families. Let me emphasise here, that those who would like to take care of children, do not need to be Paediatricians; yet, they need to be committed to understand the unique needs of children with life limiting illnesses, and their families.

The very important fact here is, children with cancer, actually contribute to a very small component; most are neurological (MR and CP and others), respiratory, haematological (Sickle cell and Thalassaemia) etc. Their disease trajectories are much longer and can extend for decades.

For Service, there are now a number of dedicated Units in Kerala, Delhi, Hyderabad, Chennai, Mumbai and recently also in Manipal. Smaller centres have been set up by Tata Memorial Hospital (TMH) at Goa and Aurangabad with the kind sponsorship of an organisation called Balkrishna Industries Limited. In Mumbai there are 3 Centres set up for Non-cancer, with the kind sponsorship of Cipla Foundation. Another Centre is planned for Neo-natal PPC in the near future. It is also pertinent here, to mention the support and services provided by Cankids and St. Judes, and Golden Butterflies, for children when their cancer progress into the Palliative stage.

The importance of this, is that now another Paediatric Palliative hospital is all set to open a centre which is Paediatric lead and not Palliative! There probably are many others.

A few years ago, the Ministry of Women and Child Development, Government of India, had passed an amendment to the ‘Integrated Child Protection Scheme’ (ICPS), by which children with Life limiting conditions could avail of a monthly stipend, life-long. The fund was available through the State. The ‘Rashtriya Bal Swasthy Karyakram’ (RBSK) had also passed a scheme for the early identification of children with life limiting conditions to be identified and rehabilitated.

For the first time, the Indian Academy of Paediatrics incorporated a Basic training in PPC; and 55 participants successfully completed the course. Another basic training is planned towards the end of this year and hopefully the Advanced course will be inaugurated by early next year. An ECHO course at MNJ Cancer Hospital, Hyderabad, under the able guidance of Dr Gayatri Palat, has been ongoing for 3 years now and has many takers. At Tata Memorial Centre, we have initiated a new course of Paediatric Palliative Care, for doctors and nurses; this will be repeated every year. There is also a Fellowship for PPC at MNJ Cancer Hospital and now a 2 year Fellowship at TMH. MGR University, Chennai also hopes to start a Fellowship soon with the active help of Dr Julius Scott and Golden Butterflies Children’s Palliative Care Center. Hopefully all of this will translate into a DM in Paediatric Palliative Medicine very soon. Many of our members have joined and completed the EPEC-Paediatrics training under the able guidance of Dr Naveen Salins with sponsorship of Cipla Foundation.

Research projects in Paediatric Palliative Care are ongoing in xylos at single Centres. Routine ‘Quality of Life’ questionnaires along with ‘Family Satisfaction Scale’ are collected as part of Research and Service. Understanding of Prognosis by parents has been another area of interest for research. The time is now ripe for a few Multi Centric Trials, to answer questions which are pertinent to our children population. One such trial, is an ongoing Bereavement study, on the care received by telephone, during the pandemic; and another study is the Provision of care at home after children return from the Centre. There were also a number of publications about provision of PPC during the pandemic in National and International Journals.

So, where do we go from here?

Most Palliative Care teams are doing excellent work taking care of children. I request our palliative care community to please try to incorporate a separate timing, with an emphasis on providing care that is appropriate to children and their families, including the siblings. Let us encourage our Social Workers and Counsellors to get the appropriate and required training for PPC, alongside Doctors and Nurses. There is training available for all.

The ICPS and RBSK schemes need to be followed by with the State Govternments’. for a speedy implementation. This will also facilitate provision of Respite Care and Rehabilitation for children, through the PHC’s, when their parents need to work.

Paediatricians are finally showing interest in training in PPC. Let us encourage those we work with to join the relevant courses, including practical training. Finally, I request those in positions of academic influence, to help us set up the DM for PPC and MSc for Nurses in Paediatric Palliative Care.

About the Author: Professor and Former HoD, Dept. of Palliative Medicine, Tata Memorial Centre, Mumbai. She is also the Former Chairperson, International Children’s Palliative Care Network, the EPEC Master Facilitator for Pediatrics, India and Oncology North Western Univ., Chicago and a Former President of IAPC.

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