A Liver for A Pair of Eyes

Last night, I watched Dan Krauss-directed #Extremis on #Netflix.

It’s a gut-wrenching, 2017 winner of Academy Awards for the best docudrama on end-of-life decisions. I shed copious tears over a long-buried memory – actually, only five years old – of a similar moment in our lives, when my mom gasped for breath on a ventilator at NOIDA’s (UP) #MaxHospital in Sector 19.

She was kept hooked to the machine for almost 18 days, as we watched life slowly and painfully ebb out of her, desperate for that one – any one sign of revival – and saw none.

Except that four days prior to her passing away – I felt a gentle, loving pressure on my hand that was placed in hers. Was it my imagination?

I can’t say. Because after that, we saw, heard and felt nothing, and then, a few days later, we got that dreaded call from the hospital, urging us to rush back immediately. Moments before, we had set off for home and not even reached, when the call came, and along with it the foreboding that something was very wrong with my Mom.

Each day, we sat outside the #ICU, and took turns to watch, and pray non-stop, with a flicker of hope that some miracle would wake her up. It never did.

Before that, every morning, I eagerly waited for that one, impersonal call from the hospital, which would inform me to deposit X amount with the hospital’s billing department, and I would heave a sigh of relief, as it meant, one more day in my Mom’s life with us.

I have two younger sisters and during those 18 days, we had to request the hospital staff to let my sisters enter the #ICU in a pair, as neither had the courage to approach Mom’s bed on her own. But as an eldest sibling, I had to face the inevitable. Each morning, I had to sit with the presiding doctor, who would patiently show me the dark, stubborn, gradually expanding patch on her lung X-Ray that showed no signs of receding. “Same condition…nothing to report,” he would say, with the sad nod of his head.   

Once the same doctor, tentatively broached the difficult subject, and I immediately recoiled and snubbed him – “I will go with her till the last mile,” I said firmly, not willing to listen to any further suggestions. The monitor above Mom's head betrayed signs of collapsing lungs, as the oxygen saturation fell dangerously low. But I kept fishing for that thread of hope, wrote daily letters to #EileenRubin, the President of Chicago-headquartered #AcuteRespiratorDistressSyndrome (ARDS) and #Sepsis, and she send me a very encouraging note.

“Let’s hope for the best,” she wrote, and in response I wrote back, “Yes, my Mom’s name is Asha, which in Hindi means Hope.” 

Those hopes got rudely dashed when we saw her being wheeled away to the mortuary. Finally, we had to face the brutal truth.

“What are you looking for?” one of my sisters asked, when she saw me frantically rummaging through my Mom’s wardrobe.

“Mama’s donor card,” I said. We had #organdonationcards made for all members of the family a few years ago. I found my Mom’s and gave it to the hospital.

Unfortunately, we could only donate my Mom’s eyes. The #septicaemia made all her other organs non-donate-able.

The irony of life is that four years down the line, I had to stand in the organ recipients’ queue for a liver transplant, and have luckily lived to tell my tale. I know for sure that my mother’s donated eyes fetched me the liver from a cadaver donor that I now host in my body today.

I can’t even begin to imagine how difficult it must have been for his family to make an end-of-life decision for him. I confess I didn’t have that courage during my Mom’s time. But someone else had, during my hour of need. Total strangers and his family made the difficult choice that gave me life.

“That is my sister, lying there…,” says one distraught relative in Extremis. “I just want to make sure she knows we explored all the options,” he sobbed, before letting the doctors unplug her.

In another corner of the same hospital, a daughter, in whom I saw reflections of myself, remained adamant. “It would appear like murder if we pull her off life support,” she wailed, even when the doctors made it clear that her mother would never wake up from the machine in any meaningful way.

“There is no prognosis. We don’t know the patient’s capacity to make a rational choice. It’s an ethical minefield,” a resident doctor rued in the film, and I could acutely and totally understand the doctor’s dilemma.

“Here’s the reality. We are all going to die, one day. But it would be good to have a little bit of say in How,” said a doctor, but then, what if the patient, as my mother, couldn't say, couldn't talk and couldn't make that decision for herself?

Caught between love and fear at #HighlandHospital’s Intensive Care Unit, Dr Zitter indirectly answers that question, “Everyday people get attached permanently to machines. My concern is that we are going to cause more suffering than likely benefit.” 

Doesn't this beg the question, “How would I feel if I was not getting better on a breathing machine? How would I like to die?

I, for one know the answer to that question. I would make a #LivingWill to make it easy for my family and my doctors to make that difficult decision for me, and unplug me, for someone else.

I’ve been on both the sides of the hospital bed. I know what I am talking about.

On this #InternationalOrganDonationDay, let’s make this pledge to ourselves. 

International Organ Donation Day