August 14, 2019 0 By Pratima Mehta

India’s healthcare industry is notoriously a’ la mode in several ways, for obvious reasons.

Remember, the recent doctor strike 2.0? Well, it lasted for 6 days and has a Wikipedia page on it.

India is a hub for clinical trials. Two reasons- greater patient availability and friendly drug-control system.

On November 20, 2016, a headline in read ‘110% rise in number of medical negligence cases in India every year’.

Contradicting this TOI reported in January 18 2019 ‘Only 15 % medical negligence cases genuine’.

You don’t know what to believe, right? Seems like those fake WhatsApp forwards. You feel like a mere bystander, watching the drama unfold (unable to contribute in any way, except by being a part of the system) and then leaving the scene with meek ignorance. The hell with the system you’d only say.

Been there, done that! But no longer.

I am going to raise my voice matter-of-factly, write my unsolicited opinions and scribble my thoughts here- for and against this system. And I want you at least, to take a note!

I felt embittered, battered and thwarted- Ira had not responded well to the long-drawn-out treatment, chances of recovery were bleak, almost nil. Add to this the arrantly lengthy hospital stay- enough to see and understand the dynamics of the place. I felt a certain ire towards the doctors, nursing staff, the hospital and the system – which remained hidden and suppressed. So much that in the first session of my therapy I spoke to the psychiatrist of only wrong-doings, negligence, impoliteness and incompassion.

Here is what went wrong in Ira’s medical case –

  1. Ira’s brain pressure was not monitored on the 2nd day after surgery. This led to her first major seizure and thereby loss of speech.
  2. No correlation was found between her involuntary movements and disease/surgery. Hence, no solution found.
  3. That Ira had caught a severe infection of the brain, especially ventricles went unnoticed by 2 days. It was discovered only when I noticed redness around the sutures with oozings.
  4. A MRI was not done or may have been avoided after the surgery citing changes in brain anatomy due to multiple surgeries.
  5. We were led to believe and given false hopes of Ira’s recovery. The routine CT scans spelled trouble- indicative of growing brain damage. Yet we were not informed appropriately despite my daily conversations with the doctor.

But here are the ‘good’ parts –

  1. Doctors- surgeon, neurologist, anaesthetic, paediatric and residents were available 24 x 7. Ira’s ICU was monitored by resident doctors all round the clock in shifts.
  2. Though I had my issues with the nursing (well, I was finicky when it came to care giving), they were friendly, mostly polite and accommodative.
  3. The entire team of paediatrics and neurosurgery were quite patient with our questions – which were frequent and many by the way.
  4. We were kept well-informed of the ongoing treatment.

Consider this in footnote. Dr. Deopujari is a ‘celebrity’ doctor, an acclaimed neurosurgeon and well-respected by the fraternity. I have seen him work tirelessly towards the good of the society. I have seen his patients recovering well and returning home– happy & satisfied & non-complaining.

We knew that the doctors were trying their best under the circumstances. Undeniably though, it was accidental negligence that had overly-complicated matters.

I felt inflamed and painful – there was this thunderous clash of the emotional and practical sides. I still wander in those ominous bylanes sometimes. I have refrained from texting him, calling him and sending him a ‘hate’ email. All of which would have yielded a no-good-thing. All this would never get Ira back from the dead. They did give their best after all.

Instead, I have channelized all my aggression, anger and lack of knowledge into building more knowledge. I try to research and understand, as far as possible. I try to learn what should be done and when. I try to help. I have learnt my lessons the hard way and I want to share them.

Remember these for time to come.

For relatives, care-givers & family:

  • For years and years, people have believed that doctors are living Gods; their hands work magic. This cultural myth is so ingrained in us that some part of us believes that they’ll pull out their magic wand, wave it at the patient and boom! If only vulnera sanentur was a real-life spell and not from a Harry Potter book. Get this straight, doctors are humans, and as prone to committing an error or spate of errors like you or me. Effective diagnosis, treatment & rehabilitation is as much about science and not only about the doctor.
  • Choose your doctor carefully, very carefully. You have every right to be educated of the illness or disease, treatment options and prognosis. Any doctor who is not conversant or patient enough to guide you or the family of the etiology needs to be stood up to. Rely on your instincts. You don’t have to go back to the doctor if the vexatious inkling persists.
  • Unquestionably, I abhor violence. Brute force, assault and commotion is NOT going to help. This is self-inflicting distress and might land you up in jail. Anger and dissatisfaction is justifiable but should not cost someone else’s life.
  • If you are in for a hospital stay, no matter how short or long, keep soft copies of all reports in your phone & on cloud. During our stay at Bombay Hospital we took pictures of all of Ira’s records – blood reports, MRI & CT scans, X-ray, etc. etc. and then shifted everything to the cloud. There have been cases of ‘documents being managed’ to tamper evidence of negligence by doctors & staff.
  • No matter how nice the staff may be stay stationed by the patient at all times. This is completely possible, except in ICUs. For the staff it is a routine job, the monotony of which gets to them after a while (like it will to you also). Certain care-giving aspects become mechanical for them. Not for you as a family member though, so you can be more vigilant and available to your patient. I once stopped a nurse from giving water to a baby adjacent to Ira’s bed, who was also being fed through a nasogastric tube. Good thing because the temperature of the water was too high! There was also a complaint of sexual harassment of a woman patient in the ICU. Point is, stay alert.
  • Start preparing your bank balance for medical expenses from an early age. Private treatments cost a bomb and are unlikely to be kept in check any time soon.

For doctors, nursing staff, medical social workers & the entire industry:

I am part of your system. My family is too. I will do whatever is deemed necessary to save ourselves from the brunt of bureaucracy, politics and criminalization rampant in this system. But this is as far as I can go. What is needed is a reform. Loud and clear again. REFORM.

Address root cause and concerns before they fan out and spread and there is no possibility left of closing the gate to the Upside Down (those who’ve watched Stanger Things will understand, basically a bad place). Here is a piece of my mind!

  • On priority, there is a need to emplace a counselling department in every hospital and make FREE counselling sessions a mandatory part of every patient-family interaction. Given that doctors are busy, understandably so, there should be somebody to educate and guide the emotional, financial and practical needs of an affected family. Counselling is a necessity and should not be treated like a reserved resource for the rich!
  • Every work-place has a set of rules, a set of practices and a set of habits that ensure harmonious conduct of the system. This is archetypal of every community too. Indians are touted as having a ‘chalta hai’ attitude –to accept low standards in the face of getting things done swiftly. We need to change that everywhere, at hospitals, pharmaceutical companies, clinical trials and hospices, even in the mind. I have seen surgeons in operation theatre scrubs milling around the ICU, increasing chances of cross-contamination. We have heard stories of how deaths go unreported during clinical trials to pass off drugs as safe. I am reading The Bottle Of Lies by Katherine Eban. Half-way into the book I lost sleep over the atrocious culture of the pharmaceutical companies, where again profits mean more than the lives of people.  Somewhere the Gandhian ideology of doing good for the society is being lost. I have nothing against earning money and making profits, but it is time to draw a line. Answer this for me please- how much is enough?
  • There is a growing disparity amongst doctors. See the image for a twitter thread between two doctors.
  • If medical expenses are rising and doctors are still complaining that they aren’t getting paid enough, where exactly is the money disappearing? Whose pockets are being filled with all the profits? Admit a patient to a private ward and a nebulizer machine is charged at 100 -300 Rs per day or per use, apart from paying heavily the room charges and the room service. Now shift the patient to a general ward and that same machine is being used at zero cost. What causes this change in price – the colour of the machine, the hands that touch it or the suffering of the patient?

Though the title reads ‘The Indian State of Medical Affairs’, this system is highly distraught in other countries too. India is not far behind or maybe it’s at the forefront! I have only lightly touched upon this topic here. If anyone is interested in a similar rant or a discussion of opposites feel free to leave a comment behind.

Do you think I should do a part II ?

This post may have left you feeling helpless, frustrated, tired, angry or sad, and if you are a doctor who is reading this you may felt exacerbated. Every word here is  plain truth- as plain as can be seen by those who want to see it. I have no fear of anybody’s wrath, I only fear the state that humanity has come to. As always, all opinions on this blog are mine. You don’t have to necessarily agree with them. Just do whatever is good, whatever is right, and whatever is ordinary. The extraordinary will be an outcome of your ordinary doings.

I don’t know what change my writing will bring about but I write from a place of love for the good of humanity, honestly.

Lastly, guard your conscience deliberately, if you have any left.

Extra Reading:

Clinical trials in India: ethical concerns