A workshop on children’s palliative care was held prior to the Indian Palliative Care Conference (IAPCON 2023) on the 9th February 2023 at the Sankara Eye Hospital next to Karunashraya Bangalore Hospice Trust. The workshop was organised by the Pain Relief and Palliative Care Society (PRPCS) Hyderabad, Two World Cancer Collaboration, the Cipla Foundation and the International Children’s Palliative Care Network (ICPCN). Over 40 participants attended the workshop including doctors, nurses, social workers, psychologists and other members of the multidisciplinary team from across India, Nepal and the Philippines.
In the morning the workshop focused on palliative care for children with common non-oncological conditions. In India only around 30% of deaths seen in well established children’s palliative care programmes are of children with cancer, thus there is a great need for the provision of palliative care to children with non-cancer diagnosis. Thus this workshop aimed to help health professionals recognise children with non-cancer conditions who may benefit from palliative care, and how to assess and manage some of the common symptoms seen in children with non-cancer conditions. The scene was set by Prof Julia Downing (ICPCN) and Dr Ishak Tayoob (PRPCS). Prof Julia discussed the need for palliative care for children with non-cancer conditions, looking at the four categories identified by Together for Short Lives, of children needing palliative care, which identified the different categories of conditions where the children would benefit from palliative care, along with the different disease trajectories for these conditions. She also identified the priorities for care and also the challenges for providing palliative care to children with non-cancer conditions. Then Dr Ishak looked at the Indian context, sharing the results of an audit undertaken showing the diagnosis of the children they had cared for, demonstrating the wide range of conditions seen in the children.
The provision of palliative care for children with cerebral palsy, neurological conditions, complex heart disease and HIV/AIDS was then discussed, looking at the principles of palliative care for children with these conditions, some of the challenges, the uniqueness of the conditions, and the key symptoms that need managing. Case examples were shared about children with a range of conditions from different parts of the country. Discussions were led by members of the multidisciplinary team e.g. doctors and nurses, giving their unique perspective on the assessment and management of different symptoms and how this varies according to the condition. Throughout the holistic nature of palliative care was discussed including physical, psychological, social and spiritual issues. The discussion was interactive, with participants asking questions and sharing their experiences throughout.
In the afternoon the workshop focused on the use of the Serious Illness conversation guide (SICG) when having serious illness conversations with children and their families. The SICG was developed by Atul Gawande and is a simple framework for physicians, nurses, social workers, chaplains and allied health professionals to conduct these difficult conversations. It uses a structured, person-centered approach and helps to explore children and their families understanding, goals, worries, strengths and critical abilities related to their illness. The workshop was led by Dr Megan Doherty, the Paediatric Palliative Care Director of South Asia Two Worlds Cancer, alongside the team from the PPRCS in Hyderbad.
Following an explanation of the SICG, Dr Gayatri Palat led a role play demonstration of the use of the tool. The role play was about baby Simra, a six-month-old with a diagnosis of Spinal Muscular Atrophy (SMA) whose parents are aware of Simra’s diagnosis, on this occasion the doctor was aiming to elicit the parents hopes and expectations. Some of the key things observed by the participants was that she went step by step, utilising some of the phrases suggested on the tool, the use of verbal and non-verbal cues, pauses and body language. Importantly the child’s mother was given time and the opportunity to speak and to share their thoughts and feelings. Participants then had the opportunity to try using the SICG. They were given two possible case studies and put into groups to practice. The goals of the discussions that they were having was to explore parents wishes for the future though using the SICG, with a focus on the values and goals for the months ahead. Some key things that participants said they would take away included: the importance of letting the caregivers know that we are there for them; the framework helps us to do a better job with these conversations.
Throughout the day there was lots of discussion and it was exciting to see the interest and commitments for children’s palliative care in non-cancer settings.