Golden Butterflies -Creating Compassionate Communities

The Lancet estimates that 2.5 million children worldwide die every year requiring palliative care, of whom more than 98% are from developing regions. Children suffering from life-limiting and life-threatening diseases like cancer, irreversible organ failures, HIV/AIDS, neuromuscular or neurodegenerative disorders, etc, have diverse and evolving needs: medical, psychological, financial, social and spiritual. As child-patients navigate the confusing realm of their illness, they need love, laughter, acceptance, and play. Their families, who put up brave faces in front of the child-patients, also suffer and need support.

Palliative Care (PC) is defined as an approach that improves quality of life of patients and their families faced with the problems that accompany life-threatening medical conditions. In India, PC is offered in a variety of ways: in-patient, out-patient, day-care, etc. Home-based PC helps patients with chronic and terminal illnesses at their residences. Visits are made by a trained multidisciplinary team consisting of physicians, nurses, social workers, counsellors and volunteers. However, home-based Paediatric Palliative Care is not in vogue in Chennai.

Further, research indicates modern society is showing an alarming decline in social connectedness. Building compassionate communities will provide everyone an opportunity to contribute to a healthier and peaceful society. 

Golden Butterflies (GB) will organize two-hour workshops on the basics of Pediatric Palliative Care and Counselling for volunteers, social workers, students, nurses and doctors with the aim of training a minimum of 3 people in each pin code of Chennai city. Trainings will be held on a monthly basis, with a batch size of minimum 10 people.

GB will initiate home-based Paediatric Palliative Care services within Chennai city limits. The integrated multidisciplinary teams will comprise physicians, nurses, social workers, mental health professionals and trained volunteers, who visit child-patients in their homes and offer tailored palliative care plans focused on improving quality of life. Our holistic approach will include provision of medicines, nursing care, counselling, along with practical assistance for the impoverished.

We seek support for a home-care vehicle for Golden Butterflies’ team to reach these child-patients in far-flung parts of Chennai city. The vehicle should be medium-sized hatchback able to seat 3 persons along with a driver, and have a spacious boot to carry a medical kit and assistive equipment. 

These trained volunteers will be called GB WINGS and will work co-ordinatedly with GB in their respective localities to meet the psycho-social, financial, medical, and transportation needs of child-patients in their locality. They will also fulfil the vital role of creating awareness about the need and importance of paediatric palliative care in their local communities.

It is generally accepted by the medical fraternity that seriously ill patients often do better when they stay in their own homes and receive personalized treatment. We aim to go to homes of critically-ill child-patients when they need us. Caregiver burnout is a challenge for many families; having access to home-based care provides another layer of direct support along with professional-level advice. Trained volunteers and others on the care team will play a crucial role in coordinating community support options.

Trained GB WINGS (volunteers) will be the BRIDGE between HOSPITALS and CHILD-PATIENTS and their FAMILIES, while also creating compassionate communities to enhance the survival of child-patients suffering from life-limiting and life-threatening illnesses.