As he lies dying

Since the time I was generously allowed column inches in this space, I have often taken the liberty to write on medicine—a theme close to my heart. The first time I did was when my dad was felled by a massive stroke. It was written in a fit of emotional pique. In turn, I felt compelled to explore why Indian doctors are the way they are. Turns out, they are among the most stressed professionals in the world. That done, I turned to the philosophical underpinnings that contemporary medicine rests on and concluded nothing works better than allopathic remedies. I stand by all of what I have written about until now.

In writing all of this, I looked at medicine as seen by a physician and the immediate caregivers. What I had missed out on until now was the primary subject—the patient. The one who has to actually go through excruciating pain even as their immediate families and doctors battle it out on what ought to be done next.

It’s a tough one to deal with. And as I prepare this dispatch to the editors at Mint, I have just had to take a call. I’m hoping it is the right one.

Allow me to put things into perspective.

It has been a few months now that dad has been bedridden. It seems unlikely that the man who enjoyed his long walks, books, music and rare wee dram of whisky will ever come back to being who he was. The stroke that got him is among the worst anybody can get. Never mind moving his limbs, his muscles have lost the strength to offer him the relief a cough can bring.

What this means is that he cannot eat a morsel or sip a drop of water—both of these pose the risk of choking him. To get around this, a Ryles Tube is in place. It runs from his nose right into the stomach. It allows caregivers to provide him with medicine, liquids and semi-solid food. The downside to it is that it has got to be changed every few weeks and puts him through a mild degree of discomfort.

A longer-term option to put him out of these frequent micro-miseries with the Ryles Tube is to put a stomach PEG (an acronym for percutaneous endoscopic gastrostomy) in place. Eventually, this allows more efficient feeding and passing of nutrients into the system.

The consensus view among all of the physicians we consulted was that this is a routine procedure. The patient is wheeled into the hospital a day before the procedure, a local anaesthetic is administered, all feeds are stopped eight hours before it begins, an incision is made on the abdominal wall and the tube is finally put where the gastroenterologist thinks it appropriate.

The procedure itself does not last more than 45 minutes. That done, sedatives are administered for pain relief and the patient is monitored for traces of any infection. If all goes well, the patient is discharged within 72 hours.

“It doesn’t get simpler than that,” our family physician advised us. His view was that the procedure is so awfully simple, it can be done at home under controlled conditions.

But between my wife, brother and me, we weren’t convinced and sought a couple more opinions. Like I said earlier, the consensus was we ought not to put much thought into it and go ahead with the procedure. In the longer run, “it will make life easier for him”, everybody said.

Just when had made up our minds, we thought it appropriate to consult a neurologist on mortality rates among people with a stroke of the kind he had. As my brother puts it, the specks that show up on his MRI look like a “Christmas tree”. With a grave look on his face, the neurologist told us, it isn’t the stroke itself that gets them eventually, but something else altogether. It could be a cardiac arrest or an infection or simply the fact that their immune systems are compromised.

This was the answer that compelled all of us to look up medical literature on the theme. My brother went back to academic papers beginning from the 1980s on the theme and he couldn’t find a shred of evidence to suggest a stomach PEG worked better than the Ryles Tube. More pertinently, there was nothing on hand to suggest it had the potential to improve the quality of his life. This literature flew in the face of all that the doctors suggested we do.

That was when it occurred to the three of us that we ought to put ourselves in dad’s shoes and figure out what it is that he may want. The neurologist who saw him last told us that while physically he was broken, his mental faculties, impaired as they are, remain intact—like emotions and long-term memories. When we thought about it, what it meant is he could possibly be depressed. Now, it made sense why he was on high doses of anti-depressants.

And when we wondered what it would be like for any one of us to get to a hospital walking and come out completely impaired, the answer was “terrified”. None of us would ever want to go to that place again.

This brought us to the next question. Is he psychologically ready to get into a room and undergo the procedure? What if he is taken there, his stress levels go through the roof on the back of terror and he suffers a cardiac arrest? What if he is taken there, and with his immune system low as it is, he contracts an infection?

Contemporary medical protocol would demand more intervention to control all of these just so that his longevity is not impaired. But he had made it abundantly clear to all of us in his hearty days that the last thing he wanted was to die miserable. It was now amply clear to us that in taking a call on what sounds as simple as inserting a stomach PEG, we hadn’t factored for what could possibly be playing on his mind.

I finally called my friend Vikram Sheel Kumar, a doctor. He shuttles between Boston and New Delhi. I have known him as one of those rare physicians who has it in him to understand what suffering really means. After he heard us out, he put things into perspective right away.

“The call you guys ought to take is between providing comfort or obsessing over longevity,” he said. His point was simple. As caregivers, we obsess over longevity. The comfort of the man in pain be damned. “So, if you are putting as much thought into whether or not to get the procedure done, I think you are doing the right thing. Do it only after you have run out of all options and reckon it may offer him some relief.”

That pretty much sealed it for us. Vikram had articulated in as many words what was only playing at the back of our minds. My wife called up the hospital and cancelled the procedure right away.

If dad has to die, I would much rather he dies the old-fashioned way. In the comfort of his home, on his bed, surrounded by the wife he has loved forever, close family and the music he listens to every day. But certainly not in a cold, sterile environment and the company of strangers with whom he shares no bond and for whom, in turn, he is just another number in a hospital gown.

Charles Assisi is co-founder and director at Founding Fuel Publishing.

His Twitter handles is @c_assisi

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