2016; Volume 17, No 10, October
Featured Article
Special Interest Group in Pediatric Palliative Care in Oncology in India – an exciting development
IAHPC Board member, Dr. Chitra Venkateswaran is our guest writer this month.
Throughout the year, IAHPC board members contribute a range of opinion pieces and other thought-provoking articles to the IAHPC Newsletter.
Dr. Venkateswaran is Professor in Psychiatry and Consultant in Psycho Oncology at the Department of Oncology and Palliative Care, Amrita Institute of Medical Sciences, Kochi, Kerala, India, and the Founder and Clinical Director of the Mehac Foundation, a not-for-profit organization that works toward improving the quality of lives of mentally ill people and their families in Kerala, and throughout India, by incorporating the principles of palliative care.
Palliative care for children is slowly growing in strength in India, and we have some excellent services providing high quality, integrated care. A Special Interest Group has also been formed under the Indian Association of Palliative Care. As a step forward, there have been efforts to collaborate with the National Pediatric Hematology Oncology Group (PHO). As a result, a new subcommittee on pediatric palliative care has been formed under the aegis of the Indian Pediatric Oncology Group (InPOG) (a subgroup of PHO) to conduct cooperative clinical studies in pediatric oncology. Such a formal collaboration brings hopes of wider integration of palliative care in pediatric oncology, with a specific focus on multicentric research.
Under the umbrella of the Indian Association of Palliative Care and InPOG, this subcommittee met at Hyderabad on 23 to 24 September 2016. The meeting was organized by MNJ Institute of Oncology and Pain Relief and the Palliative Care Society, Hyderabad.
It was great to see 46 members from various palliative care teams in India sharing a forum with pediatric oncologists with everyone expressing a strong need for integration. The highlight of the meeting was the user perspective as we had a mother with us whose child was receiving care from the team. There was a palpable sense of excitement and eagerness to make good use of the opportunity and take a unified approach.
Special Interest Group in Research – Palliative Care in Children with Cancer
The meeting started off with a Skype session with Dr. Sameer Bakshi, Chair of InPog (New Delhi), followed by presentations on the need for palliative care in children with cancer and examples of existing models by Dr. Sudha Sinha (Hyderabad) and Dr. Gayatri Palat (Hyderabad) respectively. There was a poignant moment when two families, whose children were receiving palliative care, described their experiences, providing a hard-hitting message about the enormous needs in India.
The group proceeded to work on defining the vision and mission statement. We had very interesting rounds of dialogue and have formed the first draft of the statement. As part of the group, I had an opportunity to propose a framework to develop a position statement. We plan to work on this further and bring out the document after internal and external review by experts.
The second day started off with Dr. Naveen Salins (Mumbai) presenting important evidence in Pediatric Palliative Care, with a focus on what is happening in India. He pointed out interesting areas of research that could be a priority to take forward.
We again worked in groups to define pertinent research questions in specific and relevant topics and then went on to develop the protocols too.
The meeting was hugely successful with agreement on short-term goals and plans to pursue the research ideas via Skype meetings.