When in doubt, ask the person.
This was at a workshop conducted by the palliative care unit at Chittaranjan National Cancer Institute (CNCI) in Kolkata in collaboration with Pallium India, on the 7th and 8th of December, 2015. The group of volunteers, social workers, nurses and doctors sat and worked together not only on the theory and on hypothetical case studies – but also on real patients. If any of you are asking yourself, “Is that ethically right? Does it violate confidentiality?” and so on, well, we did give deep thought to it. We had full permission from the families and patients, and we decided that it was ethically unjustifiable not to bring them in. This was the only way in which these patients could benefit from the consultation with expert faculty.
Zarina’s family thought she was in depression and that she had given up. She was just twenty-six, now battling advanced cancer. She wouldn’t eat or drink, and would refuse to swallow even the medication.
Here was a simple formula that the group learned together: When in doubt, ask the person. With a hand on her hand, a member of the team asked her, “What is your biggest problem, Zarina?” With a supreme effort, Zarina brought out one word: “Tired.”
Zarina touched her tummy first, and then painfully raised her hand and held it to her throat. “Is it pain?” we asked.
She nodded ever so gently, as if a nod itself hurt so much.
The girl had unbelievably excruciating pain, which could easily be controlled on morphine, and also severe thrush which responded to Fluconazole. She did not live for long, but during those few days she could live and eventually die, with reasonable comfort.
And what is more, she became a lesson in herself, teaching about forty professionals and volunteers what palliative care was all about.
We congratulate Dr Jaydip Biswas, the director, Dr Debasish Jatua, the palliative care physician and team on developing this unit and making it work!
Ms Rakhi Santhosh, Head of Nursing at Pallium India, at the workshop