I had written this story on July 18th, 2018. A lot has changed in these 14 months, but yesterday a phone call from a friend whose mother is truly suffering because of a terminal illness made me pause and reflect again.

“Divya, I want to know how you do this.”
“This what?” I asked gently
"The ‘end of life’ discussions with families, and especially the one you had with your own parents.”

And so the story goes…

Hi Doctor, I wanted to speak to you about my father if you have a minute.”

And in walked Rohit (name changed), conversations with whom led me to assess my own beliefs and practices about medicine and what we as professionals, from surgeons to nurses to those in allied health, work towards.

I had just returned from a 6-month stay in the US and Rohit’s Dad had been in the hospital for 3 months, in intensive care for the most of it. A man in his mid-80s, a fall in the bathroom had led to a C3-C4 level spinal cord injury. He could not move below his neck, and a tracheostomy (down his throat to help clear the chest congestion through a whirring suction machine every few hours thus helping him breathe) made any spoken communication impossible.

“He’s been refusing to come to the Rehabilitation department for his physical and occupational therapy, and is also refusing to eat,” Rohit informed me.

I started gathering more information on Uncle, his medical condition, who the primary caregiver was—in this case, his wife of 53 years. I learnt about his sense of autonomy before the accident, his stance towards illness and health, and that he had been working up until his injury, as a Consultant and also as a tutor to his grandkids.

Uncle’s response to any sort of conversation was minimal. The inability to utter a spoken word made counseling difficult. Even when the psychologist asked him basic questions, his responses were what we psychologists would call “socially desirable.”

“Are you sleeping well?” “Yes,” he would nod.
“Eating well?” “Yes.”
“Are you feeling any sadness?” “No.”

This is what my colleague reported on her attempts to communicate with him. I sensed something more was up in Uncle’s unwillingness to communicate. We decided I would give it a go as well.

I had seen Uncle in the department engaging in his physiotherapy and had seen a distant, vacant, and lost look in his eyes. That look said more to me than any word he could have managed to utter. I spoke to his physical and occupational therapists to know how Uncle was doing.

“He was putting in the effort initially, but lately he just doesn’t engage actively. Earlier he would respond to our ‘Namaste’ but now we get nothing.”

“What goals are we working towards?” I asked pointedly. “What do we see Uncle doing at the end of his rehabilitation?”

At best he could sit for longer periods in the wheelchair. It was too soon to even tell if he would be able to eat on his own, let alone read the newspaper, or write, both of which were valued activities for him.

And how would he exert his fierce sense of independence? How would Uncle script his story hereon? These were answers that only he could give me.

I walked into his room and saw Uncle lying in the bed with his eyes closed, his face turned to one side.

“Hello Uncle. I’m Divya, and we have met briefly before, while you were doing your therapy.”

He opened his eyes but continued to look away.

“I’m here to listen to you today, Uncle. I know many people have given you advice on how to stay strong, and be motivated, and keep fighting. I’m not going to say anything of that sort. I’m here to listen to what you have to say.” He turned and looked to me, and that lost, resigned look pierced through my heart.

I reached out and touched his frail, wrinkled hand, a cannula sticking out of it which fed him his medicines.

“You’re as old as my Dad, Uncle. If this were him, I would want to listen to him too. I would want to know what he wants to do, what makes him happy, what makes him pensive. I would want to know how he would want to script his story from now on. Please talk to me, Uncle. I want to know what is going through your mind.”

I saw tears trickle down his eyes, as he looked on helplessly at the oxygen cylinder next to him, his other hand resting on his side, refusing to respond to any command that he would make, and as he looked into my eyes, imploring, I found myself choking up as well.

In an earlier conversation, Rohit had mentioned how Uncle had been asking the family to take him home, how he felt he was being a burden on everyone. His wife was in significant pain due to severely arthritic knees and was due for a Total Knee Replacement (TKR) when Uncle had his accident. Rohit had a stressful job which often involved night shifts, but he would unfailingly be by Uncle’s bedside first thing in the morning. Extended family members who themselves were in their 70s came in to help. Uncle saw all this support but saw no improvement in his physical status.

I continued to hold Uncle’s hand in silence, trying to see if he would be willing to let me through those well-guarded walls. I couldn’t tell if his silence was an act of defiance.

From his point of view, no one was listening to him and were subjecting him to one thing after another. Medical interventions for his infections, feeding, clearing his chest of congestions, two hourly turning in bed, to catheterization to empty his bladder, and the arduous task of engaging in rehabilitation.

“This, Divya, I can control. This at least. Where I don’t talk to you.”

Or was it sheer hopelessness where he knew nothing was improving his condition? Had he reconciled himself to the fact that the efforts of his family and the team of professionals to try and make things better might not improve anything?

“Better.” “Improvement.” What were we looking at in terms of it translating into Uncle’s life? As far as I knew, all that he valued in terms of bringing meaning to his life was lost. So what were we all working towards?

What do you say to someone whose eyes speak volumes but who can’t express it in spoken word? I ran the risk of saying something that could stir up a cauldron of emotions without getting to the root of it, and also the risk of giving up too soon. The medium of my intervention – communication and responsive interaction – was compromised. I persisted, and waited to see how he emoted to every word I spoke.

I spoke about the expected disruption in mood after a severe incident like a spinal cord injury. How it affects not only the person but the whole family, but how a supportive, cohesive family itself is one of the biggest determinants of a successful rehabilitation outcome. And how I know he had that on his side.

A fresh tear welled up. I continued about how common it is to feel like a burden on them, but how it would be best to see it as a blessing.

“Because, Uncle, wouldn’t you be there for them if they needed you?”

He nodded.

We spoke about small the steps of progress he had taken since the time of his admission and how it was possible because of his own effort in therapy. How the therapists were working towards increasing his muscle power so that he could use assistive devices at least to regain a certain level of functionality, though the high level injury made that possibility quite remote. He looked on, continuing to make eye contact.

He was listening. I couldn’t ask him open ended questions because of his inability to speak, but anything to get closer to what he was feeling is what I chose to tread the path of.

“So, Uncle, tell me, do you think we could give it one more shot at active participation in therapy? We just need your best effort and then let’s see where this goes?”

He nodded. I couldn’t offer him false hope because I myself didn’t know how he would progress in therapy and whether he would be able to make any gains towards modified independence, but we had to see how he worked this through.

“Would you like to go home, Uncle?” I needed to be sure I wasn’t missing his intent. He shook his head.

“And you’ll eat your meals?” He smiled and nodded.

The next thing I know was that Uncle asked to go to the rehab department to resume his therapy. He started eating again, and yet, something in me told me that this achievement was temporary. And I would later be proved right.

Regardless, I would meet him every day, just to say hello, to hold his hand, to tell him I was there to listen to him, to do as he told me. I was there, because that’s the best I could do in that circumstance. No empty words of reassurance, no “pep talks,” just being there, telling him I understood that the journey wasn’t easy. I’ve learnt over time that sometimes all it takes for it to become better, is that someone understands, and shares the joys and the sorrows.

He started telling me when he was “not good,” when he was “fine,” and I knew he was feeling his brightest when he would smile and ask me how I was doing. Visiting him every day became the best part of my morning, because it almost felt like he looked forward to it as much as I did. His smile would say it all.

Uncle kept vacillating between hope and despair. I would see him cringe each time the care attendants would shift him to the wheelchair and back. Or when the suction tube was shoved down his throat, or when Aunty would stand next to him, masking her pain, to carefully put a spoonful of food in his mouth, because he just would not let anyone else feed him. And just like that, for that same family, Uncle wanted to get better, because that is what they wanted for him.

He fought through the disorientation and weakness brought on by hyponatremia (low sodium levels commonly found in the elderly), the oxygen desaturation that often ran the risk of leading to hypoxia, and being on constant oxygen support. Fight he did, till one day…

I could barely focus on delivering my presentation because I was waiting for that one call from home. Finally, as my colleague and I walked to have our morning cup of coffee after my talk at the internal meeting, my phone rang. “So, Mom’s reports are out and she has a moderate restrictive ventilatory defect. Her 6-minute walk test showed that her oxygen saturation falls to 86% on walking.” I turned myself away into a corner and cried shamelessly while being on the phone with him. I felt incapacitated and helpless in that very moment. What will this mean for Mom? For us? What next? My mind was a blur as I struggled to bring myself back to the present moment of being at work, and for the patients I had to see.

You always think your parents are invincible. You think they will always be there, until one day you are confronted with the harsh reality of their mortality, and you just don’t know how to react.

I found myself being over-protective, over-bearing, over-everything as we attempted to get accustomed to this “new normal.” The doctor advised us to keep Mom away from any forms of dust and pollutants, dogs, plants, and cooking. This was going to be a challenge. Mom always had a green thumb and loved gardening, and our 13-year-old Labrador, Jopu, has slept in their room since he was brought into our home.

“Mom, did you do your spirometer exercises?”

“We’ll take Jopu to our room and he can sleep there.”

“Did you eat your medicines?”

“Did you wear your mask before you stepped out of the home?”

“Did you do this… Did you do that… Mom, take care of this…Mom don’t do that.”

And poor Mom, was caught between a rock and a hard place…between her own wishes of leading a life she wanted to, on her own terms, and what we wanted for her…her safety, her presence, and a longer, healthy life for her.

The next morning, Jopu (who had spent the night in our room) and she were both miserable when they were reunited, and this was the beginning of my realization that I would soon be rethinking how we approached health and aging.

One day not long after, I was on my usual round to see Uncle, and I noticed a flurry of activity in the ward. Uncle was being shifted to the High Dependency Unit because he was having difficulty breathing and needed to be put on a ventilator.

That vacant look had returned. It soon turned into completely shut eyes as he barred us all from his world. No one could reach him again, not even his family, nor the doctor in charge. This was it. He wanted no more of this poking, prodding, scans, x-rays, tubes being inserted through his mouth and nose, no more prolonging his life when he couldn’t live it the way he wanted to, with dignity.

As I think back, I never really saw fear in Uncle’s eyes. Fear of death or dying every time his breath was raspy, or not enough oxygen was reaching him; or fear of what the future had in store. There was always this determined look, one that said, “Let me go.” But we all held on. And I wondered why. Whose was that call to take?

At home, we were getting better at managing Mom’s new healthcare needs. Dad was taking care of the medical prescriptions and I was focusing on ensuring that she was engaging in the activities that have brought meaning and purpose to her life. She loved taking care of the neighborhood we live in, enjoyed meeting people, and had her band of friends she would meet at least once in two weeks. She wanted to continue being active despite her illness.

There is a mental calibration needed when you realize that the body isn’t keeping up with what the mind wants to do, and Mom was finding her balance with just that. She was used to walking fast, but the pulse oximeter would start shrieking, telling her that her oxygen was falling below normal levels and she needed to slow down. With the help of a portable oxygenator, we started going out. On the days I was home, she and I went out for lunches, or to her office next door, or her hospital visits as we trialed and errored our way to figuring out the optimum setting of the oxygen supply on the machine.

I started pondering on what path lay ahead of us.

In his brilliantly insightful and compelling book, “Being Mortal,” Atul Gawande talks about how human beings find life meaningful because they craft it like a story. The story has a sense of a whole, and its arc is determined by the significant moments, where something happens. And in stories, endings matter. And as we age, or as disability threatens our very meaning of life and living, the ending may be confined by narrower options. Yet, we have the chance to shape our story by focusing on what is essential to sustaining meaning and purpose in life, rather than merely prolonging life.

Rohit and I found ourselves increasingly talking about what the next steps should be for Uncle. It had been seven months in the hospital, and Uncle was now at his defiant best.

“He’s saying something to us through his defiance,” I told Rohit, “and instead of just focusing on the medical interventions, talk to him before it’s too late. Ask him what he wants to do, what is important to him, and how he imagines the time hereon. Come together as a family to help Uncle shape his story without imposing what you want for him.” And Rohit set out to do just that.

Uncle wanted to go home, to be with his grandkids, to sit in his lounging chair, to have single malt with his sons, to see Aunty pain-free, to feel the taste of home-cooked food, to not have tubes running through his body, to not be subjected to another MRI, another blood test, another procedure.

“But in case there was an emergency, there may not be enough time to bring him to the hospital,” was the family’s concern. And Uncle’s directive was simple: “Let me go. I’ve lived my life well. No more suffering.”

He had laid out his story’s ending.

It just so happened that today Mom, Dad, and I were discussing the condition of J. Uncle, one of Dad’s friend who was on a ventilator in a hospital for three months, battling septicemia, with one organ after another shutting down. And we spoke about when to stop all efforts, how the hopes of the family for a miracle cure kept the life support going, J. Uncle’s suffering, and what he would have liked to do if he was conscious to take a decision.

With a steely resolve I told Mom and Dad that conversations like these are important to know what the family can do to respect their loved one’s wishes towards their own treatment, even if it is not in agreement with how we perceive their story to be. This is the rethinking I had come to as I faced questions on mortality around me. Mom started laying out her wishes. As I heard her, I made a mental note of what she was saying to us, and saw how those wishes were based on her strong sense of self, her independence, and her wanting to be active and in charge till the end.

No one really knows how their stories will end, but knowing that there is a basic road map drawn from the life led, a map based on the meanings ascribed to that life, the purpose they have, the goals they want to pursue, how one defines well-being and a life of quality, and the trade offs they are willing to make to achieve that sense of self, that itself is a good beginning of an inevitable end.

Today is September 18th, 2019. Mom passed away on December 26th, 2018, on her own terms. We respected her wish of not being on a ventilator to prolong her life when we knew her body was failing her. The breath we take for granted was being fought for by her, and the heart that lets us know we are alive, and well, and have a purpose to our existence, failed her. There was no hope even for the optimist in me, for the one who believed we should not give up till the end. But the end was here. The family along with the doctors decided to wean her off the ventilator after 36 hours when we knew her organs weren’t supporting her. I did not leave her bedside when they started weaning her off because I knew Mom wanted her loved ones by her side, and as far as I was concerned, I was her poonch (tail) from childhood till her last day. For four hours we chanted the Mahamritunjay Mantra as I worked her rosary in one hand, while the other held hers. “Go gently, Mom. I love you,” is what I continued to whisper in her ear, not knowing whether she heard me or not but I believe the sense of hearing is the last one that leaves the body. So she must have. She went on her own terms, just the way she wanted.

The conversations around end of life may have been heartbreaking but they helped me acknowledge her wishes on how she chose to go, with dignity.