Feb 12, 2011

House of angels

Babar Sattar
We are mostly prisoners of our individual experiences, and this makes our presumptions of truth largely relative. The tale that follows is a personal one and my version of the truth. My father used to remind me often that human nature comprises both angelical and daemonic characteristics. It is one’s acquired and nurtured values, socio-economic circumstances and conscience that determine which of these characteristics emerge more prominently to define one’s life and character.

We have been in India since Jan 5, to seek treatment and transplant surgery for my mother who had been suffering from end-stage liver disease. She has been under the treatment of Dr Subash Gupta and his 15-member liver-transplant team at the Apollo Hospital in New Delhi and we have been extremely blessed to encounter only angelic professionals and hosts in this country that we in Pakistan love to hate.

My mother has suffered from Hepatitis C for over a decade. Doctors suspect that she might have acquired it from the Armed Forces Institute of Cardiology in Rawalpindi when she went in for an angiography in 1998. Bad as we are in documenting statistics, we don’t know the exact number of Pakistanis who have acquired hepatitis. What we do know is that millions in Pakistan suffer from this ailment, and most are not even lucky enough to be able to afford the expensive Interferon treatment that has a 60-70-per-cent success rate in curing Hepatitis C. If left untreated, or if there is a relapse after treatment, Hepatitis C can lead to liver cirrhosis (a condition where the liver begins to fail) in around 10-15 years. It is hard to predict a cirrhotic patient’s life expectancy, but the quality of life is fairly grim. The only medical treatment that can cure cirrhosis is a liver transplant. According to one estimate, liver failure claims over 10,000 lives in Pakistan every year.

With the rapid proliferation of hepatitis in Pakistan the lives we lose to cirrhosis will grow exponentially in the years to come. And yet there isn’t one credible liver transplant facility that can offer the gift of life to citizens with liver disease in this nuclear-weapon state with the seventh-largest standing army in the world. Also extremely disappointing is the quality of medical advice afforded to patients in Pakistan, which seems to be caused not by doctors’ lack of medical expertise but poor professional ethos and a complete absence of accountability. For example, my mother was given Interferon treatment for a third time when cirrhosis had already set in, without the doctor advising us that this was extremely aggressive strategy that could even accelerate liver failure (de-compensation of liver in medical-speak), instead of slowing down cirrhosis. That is exactly what happened.

The doctor administering the treatment is one of the best-regarded hepatologists in Rawalpindi. He couldn’t have acted in bad faith because he is also a distant relative. Yet, getting access to him even during the treatment was a Herculean challenge. Once he was informed the treatment had gone awry (my mother had swollen up like a balloon due to water retention), he told us in a matter-of-fact manner that the treatment would be suspended, as it didn’t work. On further prodding he suggested that a liver transplant was now the only curative option. Why did it not work? What did a transplant entail? How could we plan and get ready for one? What life expectancy were we looking at without it? Not a word.

We opted to consult another liver specialist who heads the hepatology department of a large public hospital in Rawalpindi. His private hospital in Satellite Town had long cues of really sick patients. It was torturous to wait for that never-ending hour with a really unwell mother, and I was always nervous that I’d forget to ask some of the pressing questions in the five-minute audience we got with the professor. During one of these consultations, to understand the course of my mother’s treatment, I had the audacity to ask him to explain what each of the six medicines he had prescribed would do. He looked at me unbelievingly and said he’d be doing nothing else all day if he had to tell his patients in any detail what treatment they were receiving. I was tempted to offer him an extra fee for the trouble but I bit my tongue. As my mother’s health deteriorated, we asked him if we should consider liver transplant as an option. He said no.

Our dismay grew while consulting another renowned specialist in Islamabad who spent a whole three minutes with my mother and her ten-year record of lab results and treatment. We finally wound up at Shifa hospital in Islamabad and sought consultation with the hospital’s most experienced liver specialist. You couldn’t get access to him either without waiting for a few hours or asking a concerned family friend – also a consultant at Shifa – to intervene. Despite such poor ethic, so busy is this doctor’s practice that even when he prescribes a follow-up the patient still has to endure the two-hour wait, which underscores the lack of choices for liver treatment in Islamabad.

During one of the scary episodes when we had to rush my mother to Shifa, this doctor told me she might live for a few months. When I asked about our options, he said sometimes patients linger on for a few years despite a bleak prognosis, hinting that we should just rely on miracles. But he simply did not utter a word about liver transplant.

In medical science there are objective criteria to determine the life expectancy of a patient with end-stage liver disease. The most reliable is one called MELD score that is used to determine the urgency of a transplant in view of expected life span. None of the aforesaid specialists bothered to calculate my mother’s MELD score. Unfortunately, we have a socio-religious culture in Pakistan where matters of life and death are deemed preordained and attributed to “God’s will.” This is coupled with a legal regime that affixes no liability for professional negligence. Human life is fickle, but it ought not be treated as dispensable. Doctors cannot breathe life into someone whose time is up. But they can fight really hard and certainly owe patients a duty of care to act diligently and compassionately, devote the time and attention required, and educate patients about their ailments as well as treatment options. It is about time we hold our professionals (starting with doctors and lawyers) accountable for their advice, acts and omissions.

On the advice of another friend and consultant at Shifa, we also consulted Dr Najam-ul-Hasan (who is leading the effort to establish a transplant centre at Shifa, together with Dr Faisal Dar, another very professional and helpful surgeon who has given up his job at Kings Transplant Centre in London to return to Pakistan). He was the only doctor who sat us down and explained in detail cirrhotic patients’ need and eligibility for liver transplant, various transplant options, and the fact that we should actively consider transplant. He advised that the UK, China and India had transplant centres that patients from Pakistan generally opted for. At the time India didn’t jump out as the preferred destination. Having nurtured the bias of the West’s superiority in most things, including healthcare, the US and the UK were the destinations of choice.

We ended up with Apollo Hospital in Delhi through a process of exclusion. And it turned out that the universe was conspiring to get us to the best medical treatment and care that we could aspire for.

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