Spreading the essence of empathy: an NGO experience in Patient Navigation
– Dr. Anupama Mukherjee, Goa
On a rainy evening, during a routine visit to the Medical Oncology ward at the Goa Medical College and Hospital, Goa, we chanced upon a weak yet playful boy curled up at his bed by the window-side. The nurses led us to this new patient, little Arbaz (name changed) who was glued to his smart phone watching a video that graphically spoke about “Heaven and Hell”. The grim and disturbing visuals of flames in the video, made us look around for his parents to apprehend them for what could easily have been regarded as inappropriate content for a child as young as 10 years old.
His mother stood anxiously in a corner as his father pulled out every bit of paper with some medical advice, from a variety of centres. While they understood very little of what was on those sheets of paper, they knew it spelt something grievous for their son. Here they were, at another centre 150 kms away from their rural home, all in hope of answers and reassurance.
We engaged in a conversation with Arbaz, and he too put away his phone, to reverberate with 5 smiling faces all interested to know what his favourite colour was and what he thought of the rain. We learnt that he was fascinated with JCBs and his ambition was to become a JCB driver. His endearing smile and the excitement in his voice eased the cold, serious, sterilium filled environment to a warm and hospitable setting. On witnessing the same, his parents rushed to his bedside and profusely thanked us for making him smile and for drawing him away from something he had been watching incessantly for days.
This was the beginning of what would be a challenging and poignant association, which demanded patience, perseverance, empathy and care towards the child and the family. Thus, our Goa based NGO- ‘SabrCare’- which essentially implies the above, extended its patient navigation services to Arbaz and his family.
This journey involved hand-holding Arbaz and his family through the process of diagnosis, management, follow-up and occasionally meeting their basic needs. A waiver for his treatment cost was facilitated and hygiene kits and essentials were provided during his hospital stay. Arbaz’s ambition, was playfully fulfilled via a donor who gifted him a toy JCB at SabrCare’s Christmas gifting drive. The team at the Department of Medical Oncology at the Goa Medical College and Hospital, worked tirelessly to treat Arbaz and extended their cooperation to answer the innumerable queries which the family would choose to route via us during their stay at their native place.
Despite regular follow-ups and a meticulously designed treatment protocol, Arbaz’s gradual shift to end-of-life care posed a severe emotional, spiritual, psychological and logistic challenge for his care givers. SabrCare assisted in mobilising end-of-life services to be available at his residence, in the comfort of his rural home since the nearest healthcare service was 50 kms away. These challenges seemed miniscule as Arbaz and his family looked forward to meeting our team members, any or all of the 5 smiling faces from that first encounter.
Arbaz gained his wings and became our tiny angel, surely in heaven, in January 2020, in the comfort of his home, surrounded by his loved ones, his JCBs and SabrCare. The family continues to be associated with SabrCare’s rehabilitation and bereavement support program, which aims to help families regain their grounding after their tiny warrior has moved on.
SabrCare was founded in 2018 by 5 full-time, working professionals, who opted to go beyond their occupations, to address what remains a gap in our health care system. Patient Navigation is a service that guides patients through the health care system. It entails making reliable information accessible and easy to understand. It also assists in educating patients and their families about palliative care, its availability all while eradicating misconceptions that palliation is synonymous with end-of-life-care.
Paediatric cancer care remains our focus, as “An ailing child is often synonymous with an ailing family”.
Additionally, a patient navigator in such a scenario poses as a facilitator between the patient, the caregivers, the family, the clinician and the various health care workers working towards addressing the myriad aspects of palliative care.
As of 2022, SabrCare has assisted over 200 palliative patients, in our terms “warriors”. The access to information, logistic support for advance investigations, palliation and even bereavement support are available across the socioeconomic spectrum, while financial support and fund raising is reserved for those from a weaker socioeconomic background.
SabrCare also supported its “warriors” during the pandemic by making palliative services available during the lockdown, by facilitating tele-consultations and intercity travel for advanced diagnostics, by providing ration support and providing a morale boost through a friendly phone call from time-to-time.
Despite the trying circumstances, accomplishing these initiatives was possible, owing to the diligence of our team members and our young volunteers from varied professional backgrounds and not just the healthcare sector.
On this World Youth Skills Day, we wish to highlight the profound impact of the diverse skills and abilities of today’s youth, which are capable of transforming even the most grim and dismal scenarios into an empathetic healthcare experience.
Essential traits for a patient navigator
- Basic knowledge and understanding of the structure and functioning of the healthcare system
- Motivation and commitment to provide authentic and accurate information to assist the patient, caregiver and the clinician
- Patience and empathy
- Being fluent in the local language and understanding the socio-cultural norms and beliefs allows for appropriate addressal of sensitive situations and issues related to disease acceptance and treatment
- Good networking and resource partnerships
- Effective communication skills
At SabrCare, we choose to believe: “They may forget what you said, but they will never forget how you made them feel”
– Carl W. Buechner
About the Author: Dr. Anupama Mukherjee is the Co-founder and Trustee of SabrCare Trust, Goa. She is also a full-time, practicing Oral and Maxillofacial Pathologist at the Goa Dental College and Hospital.
Dr. Mukherjee has completed her training in a Foundation Course in Palliative Medicine with TIPS-Pallium India. She has been actively involved in patient navigation and spreading awareness regarding the availability of palliative services within and outside Goa. Along with the team at SabrCare, who have also completed their volunteer training program with TIPS-Pallium India, the primary motive of the NGO, remains to extend patient navigation services through-out Goa and across states to better equip patients battling cancer.