Teamwork and Laughter- Pediatric Palliative Care Team at BJ Wadia Hospital for Children in Mumbai

BJ Wadia Hospital for Children is the oldest pediatric hospital in India, which was founded in 1929. In 2019, under the leadership of Dr. Veronique Dinand, BJ Wadia started a pediatric palliative care service, dedicated to supporting the needs of seriously ill children and their families. The palliative care team has grown over the past four years and now includes 3 nurses, 3 counsellors, 2 social workers, 2 pediatric palliative care specialist physicians, a therapeutic clown, a play and toy librarian, and volunteers. This diverse team ensures that the physical, as well as emotional, social, and spiritual needs of the child and their family are comprehensively addressed.

The team serves both inpatients and outpatients and has recently incorporated a home care service for families in and around Mumbai. The hospital has more than 300 beds, including neonatal, pediatric and cardiac intensive care units, as well as many other specialized units such as bone marrow transplant, a burn unit and specialized rehabilitation services for children.

In February 2023, I had the opportunity to visit the team at BJ Wadia, and see firsthand the palliative care that they are providing. I was warmly welcomed by the palliative care team and by Dr. Shakuntala Prabhu, the hospital Director.

I started by joining Dr. Smriti Khanna, one of the palliative care team physicians, on inpatient rounds. We visited several general pediatric wards where attending physicians had requested support from the palliative care team for critically ill patients. We assessed and recommended oral morphine to treat pain for a young boy with a complex metabolic condition which was causing severe pain.

We then visited the pediatric ICU, checking on 4 patients whom the team had been following for a few days, providing emotional support to parents, coordinating counselling and family meetings with the intensive care physicians, and reviewing symptoms and making adjustments to opioids and other pain medications. The palliative care team typically is following a number of children in the ICU, working with the intensivists to ensure excellent symptom management and communication with family members.

Dr Smriti spoke to the palliative care team’s senior counsellors, identifying several children who seemed withdrawn or anxious planning for when the counsellors could provide specialized support. The counsellors used drawing and other art activities to help children express their feelings about being sick and explore their worries. These activities helped children to open up to the counsellors and provided a constructive avenue for the children to work on identifying and using coping strategies.

Dr Smirti and I discussed the need for perinatal palliative care, and reviewed a draft protocol that the palliative care team had developed to identify how they could work with the obstetricians to provide care for families who have a pregnancy where their unborn baby is diagnosed with a condition which is expected to lead to a very short life-span for the baby. Later in the day, we visited Wadia Maternity hospital, located across the street, where we discussed the Perinatal Palliative Care policy with key physicians there.

In addition to observing the work of the palliative care team members, I was also able to lead Serious Illness Conversation Guide Training Workshop training for several different groups at BJ Wadia. The Serious Illness Conversation Guide (SICG) is a specialised communication tool that helps healthcare providers effectively communicate with families about their child’s condition and prognosis and to plan for the child’s future medical care. This specialised communication training program uses workshop with role play coaching from communication experts and debriefing and discussion to help health care providers improve their communication and counselling skills. The SICG training has been used in India since 2018, with translations into Hindi and Telugu being available.

The first SICG workshop at BJ Wadia was offered to attending physicians, and there were 17 enthusiastic physicians from a wide variety of specialties including neonatal and pediatric intensive care, cardiology, neurology and immunology who participated in the training. The physicians noted how much the workshop helped them improve their communication and found the role play scenarios and feedback particularly helpful. The second SICG workshop was conducted with the palliative care team, which will help the team to adopt a standardised approach to advance care planning communication. The workshop included discussions about the best translation of the SICG phrases into Marathi as well as modifications of the Hindi version to be less formal and better reflect Hindi spoken in the Mumbai region. A copy of the SICG for pediatrics can be found here.

Some additional highlights of my visit included seeing palliative care outpatient department, which includes 2 rooms each decorated with a forest or sea theme. These playful and welcoming rooms help children to feel relaxed and provide a space for the palliative care team to meet and support children and their families. I was also privileged to be able to observe the work of the counsellors, play and toy librarian and the therapeutic clown, which are special services to support children. Monica the clown, dressed as a heart in honor of Valentine’s Day, visited each of the pediatric wards, bringing smiles and laughs to children and their parents. I could feel the mood of the hospital lightening and becoming more joyful because of her presence.

Overall, the visit was a wonderful opportunity learn about the work of the palliative care team at BJ Wadia Hospital and I was impressed to see how much the team has grown and developed over the past 4 years. The team sees 50 to 60 new patients each month and has cared for more than 1600 families over the past 4 years.

One of the important next steps for the program is to be able to provide specialist training to physicians wishing to become specialists in pediatrics palliative care, through a 1 year fellowship training opportunity. Currently, there is one fellowship position available which the team is hoping to fill in July. Interested applicants should contact Dr. Smriti Khanna for an application form via ppcecho@gmail.com. Details about the fellowship are found here and the program has been endorsed by the Royal College of Pediatrics and Child Health.