Mishti Doi: From Chennai to Cooch Behar

– Dr. Meenakshi V V, Chennai

Unrelenting lower limb pain with an ominous looking lesion in the lumbar vertebral space brought 9-year-old Ajay (name changed) and his family from West Bengal to Cancer Institute (WIA), Chennai, in November 2022. The family’s worst fears were confirmed when the oncologists diagnosed him with a Spinal Ewing’s sarcoma. He was referred to the PC team early on for his neuropathic pain and was taken up for definitive surgery, comprising of a decompressive laminectomy soon after. We continued caring for him even after surgery to titrate his analgesics and to prod him to do his physiotherapy. Unsurprisingly, the little fellow began his chemotherapy sessions and was an enthusiastic participant at the ‘Children’s Cancer Day’ celebrations held in March, 2023. His analgesics were tapered and then ceased, his radiation and chemotherapy were done and dusted in the 8 months that followed. We saw less of him, but for an occasional smile or a wave when we ran into him in the children’s ward.

Little did we know that our paths will cross again! One afternoon in February this year, the oncology resident called the palliative care team over to see Ajay. One look at him was enough to suspect that things had taken a turn for the worse. He looked gaunt, pale, and had stopped walking altogether due to his pain. Imaging corroborated the recurrence and pulmonary metastases. This time his father had joined his mother and him. Expectedly, the news of disease relapse and lack of options for cancer directed treatment left the family shattered. Ajay had a good sense of the deterioration of his health and implored his mother to save him. Meanwhile he became extremely breathless and complained of severe pain in the left lumbar region. He was having hematuria secondary to the tumor invading the kidney. At this point, because of the rapport we shared with Ajay’s mother and the fact that she foremost sought symptom control, he was started on an infusion of morphine, midazolam and haloperidol. Each drug added only as indicated and titrated to achieve symptom relief without oversedation, so that Ajay continued to drink fluids and exchange a few words with his family. He did need some oxygen by mask at the time. Fortunately, one of the oncologists spoke Bangla which enabled us to have a joint family counselling session to discuss the goals of care. A clear decision for comfort care in the hospital was made, as we felt that he would not be able to make the journey back home.

Fate however had something else in store for everyone.

Ajay stabilised over the next 2 weeks, he was no longer dyspnoeic, tolerated orals and transitioned to oral medications and requested removal of oxygen. His room air saturation hovered around 68-84% yet he wanted to savour his favourite food: biryani and mishti doi. He also said “Ami bari jete chai” (I want to go home). The parents were now anxious to get home as the uncertainty was beginning to wear them down and Ajay’s sibling was waiting at home. When I heard Ajay, my gut feeling was that he was holding on to dear life just to go back home and meet his brother Sujay (name changed).

We began enquiries on how to transport a dying child nearly 2400 km across India.

It began with air transport, simply because of the convenience. The daunting process alone was enough to quickly shelve that idea. Many suggestions popped up from the palliative care fraternity on social media. We chased many but the costs involved were staggering. Finally, the kind nurse from Delhi called with pearls of wisdom and we were back on track. We explained to the parents that the best way forward was to travel with Ajay in a first-class AC coupe from Chennai to West Bengal. However, there was one proviso, should Ajay pass on in the train they would keep calm and deboard quietly at the last station without attracting attention to themselves. They were apprehensive about making the 42-hour long journey but they knew that a choice had to be made. We harnessed the support from the community to get us tickets in a flash.

Ajay and his parents were set to go.

Our team accompanied the family from the hospital to the train. Another contact in the Government of West Bengal had arranged for an ambulance to meet Ajay at the station and take them to their home which was 3 hours away. A standby medical team was also made ready to meet them at the destination. We were in constant telephonic contact with the family throughout the journey. They were comfortable and Ajay enjoyed the train back to his hometown to the extent possible.

He spent 11 days with his family and peacefully passed on at home. His parents were sad but grateful for all the support they got along the way.

His mother requires special mention here. She spoke a good bit of Hindi; she was a stoic and practical lady who navigated the hospitalisation of her young child in a new city where the spoken language and food was unfamiliar. She gathered the right information from the physicians about the diagnosis and treatment and held fort while the father took care of the other sibling and finances at home. The home-awayfrom-home shelter managed by St. Jude’s at Chennai was a godsend for the family during cancer therapy. Her ability to manage the child, take crucial decisions and attention to detail was noteworthy. Later joined by her husband, they supported Ajay and each other all while each quietly grieved their loss.

There was no quest for alternative medicine, no panic calls, no rushing to hospital. Ajay’s parents demonstrated such courage and resilience and provided unwavering support to their son. We acknowledge their efforts to work alongside ours to have been instrumental in the provision of a beautiful end-of-life care experience for Ajay.

This experience has taught us many lessons.

#1: The exact time of death is uncertain and remains a mystery. Who would have believed that the child with an average saturation of less than 80% would survive on morphine, without oxygen and with an acceptable quality of life for over 3 weeks? It epitomises what Palliative Care stands for.

#2: It exemplified the place of death aligned with the preference of the child and family.

#3: Ajay’s quiet determination helped us appreciate the sanctity of life.

#4: All the timely help that poured in from colleagues and community mirrored a quote from the Bible: “Ask, and it will be given to you; seek and you will find; knock, and it will be opened to you.”

#5: There is an urgent need to draw up guidelines for the transport of dying patients. Civil transport authorities should not be extrapolating guidelines for transporting critically ill patients to this patient subset.

My team and I salute Ajay and his parents to have given us the opportunity to be part of their journey. We also express our gratitude to everyone who helped us along the way.

About the Author:

Dr. Meenakshi V V is an Associate Professor at the Department of Anaesthesia, Pain and Palliative Care, Cancer Institute (WIA), Chennai.

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