And Eman may not be the only or the last patient, from overseas or India, to suffer this fate. When did it start to unravel? When does a daring surgery cross the line of patient privacy? Daring because few doctors dared to take on a case so complicated but Dr Muffazal Lakdawala took it on. Can we condone the need to shout it from the rooftops when this attention also bought in Rs 21 lakhs of funding for Eman’s treatment as well made the general public more aware of the finer nuances of bariatric surgeries?
When does media attention go from information to gossip? When does PR override medical ethics? How much of the medical details of their patients can doctors share on blogs, when they seek crowd funding for such surgeries? Did they go through the informed consent process? Hope turned into hype as the media fanned the flames, and finally the government had to step in to close the issue. Could there have been a more responsible, humane way?
Undeterred by the Eman controversy, and in fact thanks to the publicity, Dr Lakdawala plans to get crowd funding for similar treatments for seven obese children from across India, three of them siblings who may have the same genetic mutation responsible as Eman’s condition. All children come from poor families so can we grudge them their chance at living normal lives, in exchange for loss of privacy? One of the stories in the June issue Express Healthcare issue, titled, Can bariatric procedures be a new avenue for medical tourism in India? analyses that bariatric surgery cases make a decent share of the medical tourists coming to India. Numbers could pick up post Eman’s case, even after all the controversies, simply because being desperately sick and poor at the same time makes patients and relatives close their eyes to almost everything else.
But one hopes that the government puts in place a policy and protocols to prevent such mishaps in future. There are signs that this is a lesson well learnt. On May 22, the Ministry of Tourism reportedly asked the National Medical & Wellness Tourism Promotion Board to draft the Medical & Wellness Tourism Policy for India. The board is due to submit the draft policy to the government in the next three months, after discussing the framework with various stakeholders and industry associations.
Speaking for the media, most of us are not medical experts. We are ruled by deadlines and the hunger to scoop the rival publication/ channel. In the era of social media, the ‘news’ could probably be a tweet that goes viral. News breaks like a doctor choosing Twitter to announce her resignation from treatment of Eman are de rigeur. PR agencies and hospitals flood us with case studies of complicated surgeries to showcase the expertise of the clients, ranging from doctors, hospitals, to the latest medical equipment. Most of it may well be justified but I often wonder if it helps or harms.
One sad incident haunts me. A hospital requested us to take off the picture of a patient, a two year old child, which was part of one such ”miracle” case study, from our archives. When we probed further, as it was featured quite a while back, we were informed that the child was no more. We of course made the alterations and took the page off our archives.
But it got me thinking. Did we help or harm patients and their care givers who may have chosen that particular hospital and doctor based on our coverage? And since it was an oncology case, the child could have most probably passed away due to the progression of the condition. But did we unwittingly offer hope, when each cancer patient needs to be treated differently? Could we have tempered the coverage?
Medical science and treatment protocols are evolving, as are medical devices and equipment. We need to amplify this evolution, so that they get the right funding and ecosystem to mature. Especially the frugal innovations sprouting from India. But viruses are also mutating, diseases are spreading faster, and climatic changes are adding their garnish to the toxic brew.
Hindsight is always 20/20 but these questions need to be asked, and answered, so that we do not fail the next Eman who comes to India seeking compassionate care. Or the seven children who have travelled to Mumbai from different states in the hopes of normal lives.
Viveka Roychowdhury
Editor