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Friday, November 28, 2014

Life and death-2

When I first met, the middle-aged father looked weary and exhausted. It was hard to guess when he had taken his last bath and the wrinkles in the face had deepened further with the strain. He had heard about my imminent arrival in the hospital from my father and was eagerly waiting for me. After a customary introduction, he opened the bundle of documents related to his daughter's illness and started to explain me what had happened.

His 25 years old daughter, married and with two children, had been diagnosed as having a cancer of unidentified site within the abdomen. After multiple hospital visits including the Cancer Hospital, they had concluded that the patient was in terminal stage and nothing could be done. She had been discharged with the advice for the attendants to 'serve' her last wishes. But as the pain became intolerable over weeks, they had brought her back rushing to the hospital again. Doubting the Cancer Hospital would admit her again, they had turned to a nearby private medical college teaching hospital where she was now being treated.

None had the idea at the time that the fateful decision to choose the private hospital over the government-owned Cancer Hospital that day would change the lives of two families forever.

My own mother was in ICU recovering from a bout of acute pancreatitis and I had come rushing back from the high Himalayas, abandoning the Annapurna Circuit trek midway through, and remained in the teaching hospital for at least a week afterwards.

My first impression after hearing the tragic story of the father was that, they should be sent back to home after prescribing enough painkillers for the patient. Keeping the patient in hospital made no sense when the chances of recovery were nil and relatives had already understood that fact. Seeing the exasperation and sense of resignation in the face of the poor father, I hastily offered to prescribe them a combination of opiate analgesic and antihistaminic. But soon I realized that it had been three years since I had last prescribed a medicine in a card or slip and even forgotten the dose. Moreover, it was not easy to convince the pharmacists to sell the abuse-prone opiate analgesics, that too in large amounts, without a proper prescription slip with hospital's name.

Eventually I decided not to prescribe the medicine immediately. Then my enthusiasm dissipated slowly and I left the father at the mercy of hospital doctors.

After initial disappointment, the father came closer to me again slowly and I was introduced to his son-in-law, the husband of the patient who had directly flown to the hospital from foreign employment in Malaysia. His face was even more pathetic and stony-looking and it was impossible to read it further. He was tormented to the core by the wife's illness as well its financial implications as he had to leave his job in Malaysia and had two children at home to take care of. He was at the brink and it appeared that he just came to see the face of his wife before she died because the prognosis had been explained to the father that way during the previous hospital visits.

Slowly both the in-laws started sharing their grief with me.

Eventually, the treating doctors came up with a fateful 'magical' idea for her treatment. Suddenly they counseled the duo that the disease crippling their loved one may not be cancer at all. The patient was now all bone and skin with round and hugely distended abdomen, but they told them it could easily turn out to be tuberculosis. All that was done for diagnosis so far was imaging and in the absence of tissue diagnosis, it was impossible to theoretically refute the possibility of tuberculosis. Rational reading of the imaging reports, though, left no doubt with the diagnosis of a cancer; beside the bulky main lesion in the abdomen, other mass lesions had appeared in multiple vital organs like liver and kidney impairing their functions.

The relative duo suddenly felt like finding an oasis in the desert. After being incessantly bombarded by the gavel of a cancer for months, there could be no better news than this. They were perceptibly energized by the faint hope now after all the expense and disappointments so far; they could now see the light at the other end of the tunnel of their suffering.

On the other hand, I was convinced that the chances of the disease being TB instead of cancer were next to nil, though nothing can be ruled out in medical sciences with cent percent certainty. I was also alarmed by the treatment plan of the doctors; if there was suspicion of tuberculosis, they should have gone for a minimally invasive way of tissue diagnosis like fine needle aspiration, that would likely give them a definitive diagnosis on the same day. But to my disbelief, they were planning to open up the abdomen and 'look at it'.

My forebodings worsened as the date of operation neared because the patient was in no state to tolerate a major procedure and it was clear that her remaining life was in weeks if not in days anyway. Having learned the fact that both the men with their own families were at the verge of being homeless due to the expense of the treatment so far, I was firmly against the plan to get her operated. I tried my best to convince them not to agree for the operation by explaining the risks but I could not advise them directly to bluntly refuse the doctor's advice both ethically and practically. Even though I was ready to forget the ethical part, there was one in seven billions chance that they would operate her against my advice, find it to be tuberculosis and treat it with antitubercular drugs leading to recovery. That would be a miracle but it is always difficult to rule out miracles in medical science.

The same day they operated her, my mother was discharged and we left the hospital but we were by then so intimate that the father had told me much about their lives and we had exchanged our numbers.

I called him after two days and found out that my worst fears had come true. The patient had been ventilated in the operation theater itself and shifted to ICU. There was no question of her regaining consciousness again. The operation had failed spectacularly and most likely the patient had been brain dead at the operation table itself. But somehow they propped her up in the ICU making the relatives pay more than fifty thousands rupees a day. My safe guess is, they were too ashamed to admit their mistake and the only safe way to hide the fault was to prop the patient up for as long as possible in the ICU.

Frustrated and furious with the doctors, I was tempted to advise him to slap the doctors and resort to arson, call up the entire village, vandalize the hospital and ask for compensation.

As you can easily guess, I could not and did not do that. So again I asked him to request the doctors to remove the ventilator and let the patient die with whatever dignity she had been left with. In that way more expenditure could be avoided so that the remaining members of the family would have something to eat over following days.

It was a devastating feeling and I felt restless for hours after hanging up the phone. As happens with every other tragedy in life, I moved past it presuming that the reality had finally sunk in the father and he had boldly asked the doctors to disconnect the ventilator from her.

I called him next after about a month and inquired what had happened since. He was equally sorrowful but what he said was even more disturbing. He had been unable to gather enough courage to ask the doctors the way I had suggested and she had remained in ICU with ventilator for seven or eight more days before they themselves declared her dead. I reluctantly asked him about the expenses. He said nonchalantly: "more than six lakhs, sir", meaning more than half a million rupees. The cumulative cost of her treatment had now crossed the million mark but more than half of that could have been saved if they had not decided to operate her.

Given that the health care system in the country is free from the virtues of accountability and conscience, it was my turn to feel guilty as a part of the system.

Two families were literally in the streets now, the father's as well as the son-in-law's. Both had been at the verge of breaking down when I left the hospital; one can only imagine what they must have gone through the entire week that followed. A faint flame of hope had given way to so much disappointment and loss that they were now in an unimaginably deep financial ditch, either of them unlikely to come out of it for the entire decade ahead. To repay the debt, they would have to compromise in everything from the children's education to their nutritious diet.

My guess is that she was only one of a thousand patients who are let down by the system in this way every day. With total breakdown of trust between the givers and takers of the health service, some unscrupulous troublemakers can now reap an undue benefit in the form of compensation even after natural death of their relatives in hospitals while the ordinary and voiceless people are penalized every hour in this way.

 The treatment of the patients in all hospitals across the country, even more so in the glossy and expensive private ones, is utterly arbitrary and often there is not protocol that helps individual doctors to make important and life-changing decisions like whom to operate and whom not to. Every single doctor is, in a way, an authority in himself/herself bringing us to an unfortunate situation where the lives of the patients hinge on scrupulousness of the decision taken by a person rather than some meticulously prepared and enforced protocol based on evidence.

In this particular case, this is what should have happened: a timely fine needle aspiration of the patient would have easily yielded a diagnosis (most likely that of cancer) the same day and patient could have been discharged the other day with adequate painkillers. That would have saved the relatives the trauma of one more week in the hospital as well as half a million rupees of money that would go a long way toward taking care of the children of the deceased.

That did not happen and the doctors took the disastrous decision to open up the patient's abdomen instead. While I am in no position to insinuate whether they made that decision in good faith or not, there are three practical explanations as to why the doctors hurried for the operation.

First, they were so thoroughly incompetent that, as is often joked about surgeons, they knew how to plunge a scalpel in the human body but not when to plunge it and when not to for the benefit of the patient.

Second and equally unfortunate, they had an idea of what would follow but could not resist the temptation of operating a patient deemed to be terminally ill with cancer, getting a diagnosis of tuberculosis and treating it. That would simply make them super-doctors.

Third and the worst, there could be a system in which the hospital gave incentives to the doctor for every operation and the lure of those incentives was just irresistible no matter what.

Each of the possibilities is equally bizarre and disturbing and reflects the rot that has reached to the core of our health care delivery system. Incompetence and lack of integrity are both devastating enough on their own but when present together, they make a deadly combination.

Whatever reason prompted them to take that decision, the doctors had willfully misled the patient party about the options available for tissue diagnosis, and consequently, for the case management. While they had every right to doubt the diagnosis of a malignancy made by earlier doctors, they should have explained the feasibility and scope of each of the procedures: fine needle aspiration, an image guided small biopsy and the full-scale opening up of abdomen termed laparotomy. In case of a detailed and honest counseling, there was arguably no chance of the patient party opting for the devastating laparotomy for the patient.

So, what am I trying to prove with this tale, that my fraternity is unconscionably wretched and rotten to core and Nepalis can no longer rely on the system? What is the alternative then? Or, as some colleagues in the fraternity will likely allege, do I have an axe to grind against the surgeons who devote their entire lives to save people's lives? Am I exploiting my access to the intimate details of the profession to write articles which would fetch me name, fame and even bucks? Do I possess any moral superiority to judge my colleagues in the fraternity? Most important of all, now that I have bitterly complained about the problem, do I have the solutions as well?

Answering these questions is obviously beyond the scope of this article but I promise to come up with answers to all of these as best as I can in a follow-up article. My sincere hope is that this story will motivate the enlightened members of Nepal's medical fraternity to engage in healthy and meaningful debate and most importantly, soul searching.

This is the second part in the 'Life and Death' series by the author. The series is, in turn, part of the author's ritual to publish autobiographical essays on every of his birthdays.  Read the earlier parts of the birthday series here: Twenty-eight years of solitude,  and Twenty-nine years of insignificance.

And read the first part of the 'Life and Death' series here: Some reflections on life and death  

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