She said she saw her husband of 60+ years after 2 months, as he had been in a rehabilitation center since his last discharge from the hospital. She wasn’t permitted to visit him because of the ongoing pandemic, nor was he well enough to be discharged home yet, but unfortunately, he had to be re-admitted to the hospital as he continued to refuse to eat or drink. Thankfully he was tested negative for COVID, but at the same time, his kidneys were failing, causing him to develop retention of excessive fluid and the waste products he wasn’t able to eliminate from his body. He was fluid-overloaded, edematous and becoming uremic.
Diuretics weren’t helping him much. He didn’t have an appetite. Being in the 9th decade of his life, he continued to refuse dialysis or a PEG tube for nutrition, whenever offered the option, but was otherwise disoriented, unable to comprehend or follow simple commands secondary to mental status changes from his underlying acute on chronic medical conditions and a touch of dementia that probably had gotten worse with the change in his surroundings, lack of familiar faces or voices, his wife, his daughter, his home..
It was day 4 of 20 of his hospitalization, when he came under my care, as my patient. The comorbidities, along with advanced age, anorexia, worsening renal failure causing pulmonary edema and dyspnea even at rest, with persistent orthopnea, lead to almost a failure to thrive picture in my elderly patient! It was time now.. He was hospice-appropriate as per my initial objective analysis when I saw and examined him for the first time, reviewing his data, past medical history, current hospital course with oliguria progressing almost to anuric stage.
His eyes though open, saw through me when I held his hand to respond to me, but he snoozed away in no time again like a baby!
I still shook his hand gently, FaceTiming his sweetheart to see if she could convince him to have a couple spoons of his soft diet that he was cleared to have, after a dysphagia screen at bedside. She said, “Oh my baby, I love you, I miss you.. Look at me, I love you baby”.. He immediately trying to focus on the little iPhone screen, said “Love you too”. “Now would you please have something atleast to eat, so that you can be strong enough to come home to me soon.. ?!“
“Yes, I wanna go home,” he responded feebly. “Honey, also I think you’ll benefit from dialysis your doctors said”, she added. “No dialysis for me please. I just wanna be home” he continued. I saw her face pleading now, “please doctor, can we at-least try, or else he will die anyway.. Is it going to be too painful for him to go through dialysis? Can we at-least try? Maybe it’ll help him and he could start eating or drinking better, perhaps, even breathing better?”
I had called her to see her husband, who I had seen as my patient, not quite doing well, with a guarded prognosis either way, with an aggressive approach to treatment or with comfort measures alone. So was my discussion with the nephrologist and the cardiologist, who had concurred with palliative care and supportive measures only at this point.
But that minute of their conversation, followed by their numerous FaceTime conversations every single day, morning, noon, evening, to one day when I got him custom made pasta with chopped chicken with soy sauce from the cafeteria, when he asked for “Chinese food only” specifically for lunch, when telepathically his wife had cooked Chinese shrimp at home as well when we FaceTimed again for lunch, to their life-long love for each other seen through those brief chit-chats, expressing how much they loved each other and how they had craved to be together again soon, had somehow made this physician in me more of family, now wanting to try everything, just as his wife had mentioned.. maybe to give dialysis a shot, prior to considering hospice, with a plan to send him home with home health with outpatient dialysis, hoping he’d recover physically to be able to function a bit on his own, and that if the kidneys were well taken care of at this time, everything would improve thereafter!
Well, his breathing did improve, but uremia so far hadn’t. There was literally nothing he would want to eat either, at which point, PEG tube was offered, hoping for nutrition to help improve things in the long run, as per our ongoing numerous discussions with his wife throughout the day..
I didn’t feed him any breakfast that morning, on day 20 of his hospitalization, as he was getting his feeding tube placed in his stomach. Nor did I FaceTime his sweetheart that morning, as he was leaving to get the procedure done. So we were all planning on the much awaited discharge process, of him being home soon, with his wife, with better renal function, a bit more nutrition, physical therapy to be continued at home and a nurse visiting to assure proper recovery.
It was about 12 pm and while seeing my other patients, talking to my other patients’ families, FaceTiming their loved ones and completing my notes, at the back of my mind was to get back to see how my patient’s procedure went and to be able to Facetime his wife to demonstrate how the process of feeding him would be now..
“Code blue” was called in the GI suite. He had had a cardiac arrest. CPR was done, he was transferred to the ICU, coded again, but he didn’t make it.. My hands trembled to call his wife, but as I did, I could barely speak with her at this time. With hard to control tears rolling down, a heart as heavy as a rock, as many words I’d wanted to tell her, I found none.. She asked me in no time, “Is he gone Dr Aneja?”… unfortunately yes, he was no more…
And just like that, abruptly, as if not one, but two lives came to an end!
Hospice may have been the appropriate choice from the very beginning. Just what I had discussed with his wife when I’d first assessed him.
Analyzing what had happened in the 16 days I’d taken care of him, or them I’d rather say, I somehow started to think as if I was part of their family, or they were mine, swinging me back all the way from discussing hospice as a physician, to being in denial, to not give up yet, to fight, to hope for better.. Their relationship, their marriage and untold love of several decades naturally was too human for me to have any place in my heart or mind for intellectualization, or objective, logical, practical reasoning anymore. I went through, or rather lead the process of bargaining along with his wife and daughter.
But although I felt guilty about how I drove this situation, just with my heart, I don’t regret what I did now… anymore..
Now I was made to feel differently, as she called me, reassuring me, as if stronger than me despite the loss she went through, that perhaps I was put there for a reason – To be able to have them see each other again, after months.. and have them express their love to each other, spend their last few days and moments together in between his naps and dialysis sessions, though not physically, but virtually, emotionally, in the best way possible amid this pandemic. And for his wife to not live with the guilt that she didn’t try her best towards helping him recover, and most importantly, that she didn’t give up.. and that I could be there maybe not as what a smarter and better doctor than me could’ve done, or that there could have been any change in the prognosis or outcome, but hindsight 2020, after talking to his beloved wife again, I feel I was there precisely for those things which were though small to me, meant everything to their family, and that was all that mattered to both of them during his last few days..
Pallavi Aneja MD
NotesOfADrMom 