18/July/2024
A middle aged man, the husband and bystander of my patient, a 58 years old gentlewoman, came into my outpatient one late evening with a request.
Fighting back tears, he asked me to withdraw care, remove the breathing tube and free his wife from the mechanical ventilator, so that she could be shifted in her final gasping state back to the hospital room, so that he could be near her, in private, in their final moment.
It felt like he was asking my permission to help him let his wife go. That he would allow his wife to die, if I allowed him.
There was a reason for this. This was not the woman's first encounter with death. She was diagnosed with cirrhosis seven years ago, when she presented to me in a comatose state in my emergency. It took us two whole days to wake her up while also ensuring that she did not end up on the ventilator.
She went into a particular type of coma - called hepatic coma. When the liver fails -acutely or chronically, toxins such as ammonia build up inside the body, leading to brain dysfunction. Only in her case, the liver had not failed yet and the reason for the increased toxins in her blood was a condition associated with cirrhosis called portosystemic shunt syndrome or PSS. In patients with PSS, large volume of blood from the liver is diverted into gigantic and tortuous abnormal blood vessels called shunts that form in response to an increasing liver pressure that develops due to an progressively stiff and shrinking liver (cirrhosis).
I offered them a shunt closure - a minimally invasive radiological procedure that blocks the shunt and diverts the toxin-rich blood back into the liver, allowing the liver to cleanse it up and relieve stress on the brain. They did not have money at the time and since they were dependent on their only son, and he was trying for a new job, it was not easy for them to go for expensive (but effective) treatments. For two whole years.
Those two years were like the inner circle of Hell for them. And for me. Everytime she developed an increase in toxic blood due to the mildest of triggers - a passing flu or constipation or dehydration, she would go into brain dysfunction. She was hospitalized multiple times for brain dysfunction (called hepatic encephalopathy) and two more times in coma. And everytime, she got ill, the husband, with the help of their neighbor's son would bring her in their small car, driving over 160 kilometers, to my emergency department, her lying in a disoriented state on his lap at the back of the car, wherever I worked (I changed my work across three hospitals from 2017) to help him wake her up.
I remember one time, when she was utterly disoriented and confused for a whole week when she got out of the comatose state, she did not recognize him and he would burst out sobbing in front of her.
In due course, their son left to work in Canada because he was not getting any jobs here and they were unable to make ends meet. The husband had some assets (small plot of land) and their current new home. He sold the land to get his son to Canada where he could start work at a new job, but in a frozen god-forsaken secluded place in a factory cum storage facility, with good pay that only desperate people would opt for. The husband would tell me that his dream was to bring his son home one day, get him a job here and not make him work in a frozen wasteland. His son did not deserve it, but he was forced to do it to pay bills at home and for his mother's treatment. All of them together - that was most dificult in these times. That families had to be purposefuly broken into pieces and scattered, for them to sustain as a family.
Two years later, the husband came to my outpatient with my patient, and told me that they secured enough money for the shunt block procedure. I spoke to the hospital and gave them further concessions and we did the procedure. For the next 4-5 years, she did not have a single hospital admission due to brain dysfunction.
But the cirrhosis was still there and the treatments and surveillance had to be continued and it was all costly in the long term. I told him she was ok for now, but she would require a liver transplantation in the future, because the cirrhosis would usher in other complications, the deadliest of them all, infections and organ failure, and that we should be working towards getting her a cure from cirrhosis.
He said he could never muster up such amount of money (~ INR 2000000) and that we had to face what came and he was glad that he had a strong ally in me to take up the challenges. Because I had snatched her away from death's hands many a time. But he did not know that even I would stumble, fumble and fall when advanced liver failure put out its devilish fangs, bringing in the worst complications, worst of all, severe multidrug resistant bugs.
And it happened. Over the last year, infections started ravaging her body. First it was bacterial, then seasonal viruses gave her pneumonia and then fungus. It started with skin infections, after that her lungs got involved, and then came the devastating blood stream infections. And we fought back every single one of them under extreme aggression with whatever medical science had to offer, to keep her alive. During one such blood stream infection attack, she went into a coma and I told him that she would die, but he reminded me, how strong an ally I was to him and that I would help him wake up his wife. Afterall, I was doing this for many years for his family. And I did it, this time too. And he took her home, only to bring her back a week ago in a comatose state.
This time, it was a foe we had always feared would come into the frame. And it was here, and it was time for us to take up the challenge. But I was exhausted. I was stressed out beyond. I lost my sanctuary. This time, she had a deep skin and soft infection with a devastating bacteria called extremely drug-resistant Klebsiella (XDR-Klebsiella) that responded to no antibiotic. She worsened, and the critical care doctors put her on a ventilator. She went into shock as her heart function collapsed. For the fourth time in her lifetime after the diagnosis of cirrhosis, she was critically ill. She progressed to multiple organ failure and they asked me next steps - upgrade all organ supports, put her on dialysis and get aggressive. Like we always did.
I am only in my early 40s, but I had seen deaths as much as a veteran soldier would, on a bloody battlefield, because I had cared for 1000s of critically ill cirrhosis patients across the years; and all that experience told me that she was going to die. How much ever I tried, the team tried, the disease had brought out its deadliest fangs, one last time, and with the sole intention to defeat us and take her away. I had to concede.
I had to concede, because the husband came into my outpatient, sat himself down, and showed me a thin gold chain on his neck and a golden ring on his left finger, telling me that these were the last two items he had to sell to keep the treatment going for his wife whom we all knew was going to die.
"These are the only two gifts I have from her Sir," he told me. "Please allow me to take her to the room, away from the ventilator, so that I can at least be with her when she dies and also keep her gifts. I dont have anything else. If I let her continue in the ICU, she will finally go, and I will have to sell these gifts to pay the hospital bill and I will have lost everything."
It felt like he was asking my permission to help him let his wife go. That he would allow his wife to die, if I allowed him.
My patient for nearly seven years. I had sacrificed sleep, skipped meals and lost in thought many times, disregarding my family's needs, to keep her alive all this while. But then, this was beyond just medical care. This was honoring death and inviting it home, with dignity. I honored his last wishes and decision.
My patient died late night on 18th July 2024 in the room, with her husband by the side. Only the two of them. Only he was privy to see her breathe her last, like how she was privy to all his memories in death. He got to keep the chain and the ring because the hospital bill was not burdening.
I wont see him again. Our last goodbye ended in my outpatient, with me holding his hands tightly clasped, while his tears wet mine. Maybe he will spend the rest of his life in that small home of his rich with the memories of his wife. Or maybe he will make a journey to a frozen god-forsaken secluded place to be with the only family he has left.