Data Driven Doc: Staying Informed on the Diagnosis (Part 1 of 2)

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I’ve been told the events of the first time so many times, that I have a vivid memory of it now. My fathers mother, Bhuma, succumbed to a recurrent brain tumor that kept growing in the small confinement of her skull. When she was first admitted to a small hospital in Massachusetts, confused after a fall, my father was not at her side. My aunt had driven her to the hospital, and first received the news of impending brain surgery. But without my father around, my aunt couldn’t let my grandmother know. Bhuma was a woman who was in exquisite control of her world and those around her. To know that she was losing that control in a strange land would unravel her deeply, thought my aunt. Could she undergo surgery without knowing why?

Although common in South Asia and other parts of the world, this idea of keeping a diagnosis secret from the patient, especially one who needed a surgery, was foreign to the surgeon. As the story goes, my aunt stood between the surgeon and my grandma, and refused to translate a word of his English into her Tamil. The standoff continued until my father got there the next day.

Once my father arrived, my aunt gave up her shield to him. The energy of my family was spent in understanding the prognosis and explaining it to my grandmother. It did not occur to them to explore what treatments to do and in which sequence. It was 1989, and the trust in the surgeon was much higher than the trust in the patient.

After much reassurance from the surgeon, and not much understanding, my family consented to neurosurgery. The tumor was incompletely removed, and treated almost too conservatively. It came back again and again until there was no radiation or surgery that would stay it’s course.

I often wonder what Bhuma thought of all the medical decisions she relegated to her surgeon alone, and what sense of acceptance and calm allowed her to continue through the storm of medical care that pursued her the rest of her life. For a woman who consistently went out of her way to ensure that even her neighbors had their lives in order, the loss of autonomy and empowerment might have been frightening.

I often wonder what Bhuma thought of all the medical decisions she relegated to her surgeon alone.

Many years later, cancer found my family again. Freshly graduated from Stanford Medical School and an intern at UCLA, I felt ready to assume decision making for my father. When we were initially debating surgery vs radiation for early prostate cancer, I did exhaustive searches of the published research and expert reviews. I understood the side effects and the tradeoffs extremely well. My father became integral to the decision making. We made a calculated choice to go for surgery. My father strongly preferred to have the cancer out, and to have radiation available as a salvage option. The evidence and guidelines supported either choice, although each expert still had their preference in the matter. We were confident we had made the right choice.

So when my mother called me with her early online access to dad’s pathology report – I was saddened and grateful at the same time. The tumor was more aggressive than we thought, a Gleason score 9 instead of a 6, was not early and limited to the prostate but had invaded the surrounding tissues, and the margins were positive. There was still some of that cancer left behind.

We certainly would not have known this information without a surgery. My dad was in the small percentage of patients where the preoperative imaging and biopsies had not picked up the full extent of the disease. It was a lucky alignment of our decision and hindsight.

-Dr. Naresh Ramarajan

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Decision Making

flowers-164754_1280Decision making is about pros and cons.    I was on my way to Boston Logan, to catch my flight to Bangalore.  My cofounder called me, and said “it’s a Navya moment.”    There was a personal, family, decision that he was helping coordinate, while he was at the Maui airport to fly across the country to get to his family in New York City.   Between our flight schedules and travel times, we had about an hour or so to chat before certain important decision had to be made.   The clock was literally ticking, and we started our process.   He had looked up the papers that discussed clinical trials and retrospective analysis of individuals in similar circumstances as his kin.  (He will write about these experiences in a blog post, soon.)  The advantage of waiting versus proceeding with a surgery was about five days at most.   That, was the known.  The evidence.  That we could likely delay surgery by five days and gain the benefit that would bring.  However, the disadvantage, the unknown, the risk of any complication while waiting, far outweighed the known disadvantage (mandatory stay in a well-managed, top of the line, intensive care unit).   Then, the experts.    Experts known to us pointed to their experience of being able to manage any complexity of surgery at the time.   They were comfortable, confident, yet let us (the patient and the family) decide.  What did the patient want?  There was anxiety.  There was anxiety about the known and the unknown – what was worse?  What did she prefer?  Patient preference.  And then, the much talked about guidelines – the international guidelines that indicated that both, surgery and non-surgery were acceptable options at this time.  Brilliant!  Not helpful.   It was a Navya moment.  We had to reconcile, hold each other’s hands, and decide from the patient’s perspective.

There are many elements to decision making.  Evidence, experience, experts, and patient preference being the most measurable, computable, elements.  Guidelines of course are the most general and are the weakest link.   At the center though, is the process of utilizing and combining all of the above.  The Navya process, which is extendable from oncology to obstetrics decision making.   The gentle consideration, the conversations, the repeated conversations on the various considerations, the data, the people, the process.  Always results in a decision that is well thought out, bringing clarity, and rooted in the best evidence and experience of experts.   The Navya process that we followed in an hour long conversation lead to two beautiful outcomes, a pair of healthy baby twins, born at the right time to a mother who felt relieved with confidence in her decision.