The words used to describe the difference in what we humans deserve and what the universe grants us are foundational in the major world religions – translations and applications of “grace”, “mercy” or “blessing” are abundant in every culture.
As physicians, we have been taught to anticipate and analyze the observed versus expected outcomes. The inexplicable survival of the drunk motorcyclist after the crash, or the limited stage, resectable cancer that takes a life.
William’s sudden death was the one who made me contemplate the fairness of it all – the apparent lack of mercy and justness in a universe in which such an event could occur. Especially when he had come through so much; the inked numbers on his forearm a sober reminder every time I spotted them in the office. Especially when his daughter Sandra had given up years of her life, so many nights getting up to help with bathroom trips or night time wanderings.
And so it was cold, squeezing fear that settled in my chest when I saw the ominous message come through my clinic “Mr. R has been admitted to (Neighboring hospital ICU), please call.” Of course, my mind recalled immediately our most recent “win”; his face lighting up with pride when Father and Daughter showed off a picture of him getting out to the store so they could pick up my holiday thank you gift of a traditional polish pastry. We all savored that day.
His entire team, the residents and clinic staff, his daughter – all knew what was written through his chart – end stage diagnoses, characterized by decreased function. We also understood that his pride, his determination meant death at home on his terms – we all coped with the pain, I stretched my muscles as a palliative doc, keeping symptoms as well controlled as possible while maintaining functional status and alertness. We were all ready for that final turn, when we would gather around and say sad but dignified goodbyes.
Stretching even further with Sandra because her full time job of caring for her father meant that she wasn’t getting to her rheumatology appointments that she desperately needed, so I did my best to Do No Harm as I practiced right at the edge of my scope. Telling her that she needed a doctor smarter and more experienced than me to get the control she needed of her disease.
The two of them challenged me to be the best version of myself as a physician. Being the calm voice of reason when She lashed out with anger that covered up the fear that she was failing as a caretaker. His anxiety that manifested as certainty he was infested with insects, picking endlessly at benign scratches and freckles, and the relief we all felt when I finally coaxed him on to an SSRI.
Anything that could challenge a PCP, they threw at me.
And then he died, traumatically on a Tuesday morning. None of us were ready for that. That cold fear almost taking my breath away as Sandra was absolutely broken on the phone. It hardened into anger as I sat in the unfamiliar ICU waiting room, coming up against the Hospital that wasn’t Mine and its one visitor policy, hating that I couldn’t be there to comfort them both when we had all come through so much together. The nurse being as heartbroken as all of us that I couldn’t say goodbye to someone so dear.
The chagrin I felt at speaking the words I had been on the receiving end of so many times “I’m not mad at you, just at what’s happenening.” Barely registering the sitcom blaring from the TV in the waiting room, instead feeling the collective weight of the suffering and separation endured in that small, sterile space.
And then Sandra’s PTSD. The anger, the lack of sleep, reliving the event every time she followed everyone’s exhortations to “try and get some rest”. Contracting for safety. Making 1 week, then 3 day follow up appointments and still seeing the downward spiral. Calling “Just to check in” on days when I could grab a minute between other patients.
The awful day of having to send her to the ER. “You can’t see how Bad it’s gotten Sandra. I promised you and William I’d keep you safe, and that’s why I have to do this right now.” I remember the red flush of her face, showing her anger again covering the hurt and feeling of betrayal.
“If you do this to me, we’re done. I mean it. You can’t take this decision away from me and expect me to come back and trust you.” Knowing she meant it, and that I wouldn’t have the chance to make good on our my promises to help her “find a way to live in her new normal”
Having to sever that relationship because you know it’s the right thing, hating that their pain and disease is so severe that it’s causing them to not see reality. Knowing that it’s ok for them to hate me for the rest of their life, as long as they are alive to do so.
And then Grace; The receiving of something undeserved.
Sandra’s name, back on my schedule months later. A second chance, for both of us.
“I am so glad you’re here today.”
“I am too, Doc.”
I really had resigned myself that I wasn’t going to get a win out of this. That I was going to adhere to best practice and be left with only painful memory, because that’s how medicine is sometimes.
The universe can been deeply unfair. Good people get kicked when they’re down. But then we experience Grace, Mercy, the state of being Blessed… those are the days that I know we humans have someone cheering for us.