the face of God

footpathTo love another person is to see the face of God.

~ Victor Hugo

It’s been a year since I posted this and a lot has happened in that time. My word, in some ways I feel like I’ve lived lifetimes over the past year! Still, I think about this patient often. I miss her.

I don’t think many people read that post. And that’s okay, who’s immediately moved to read a post with a title in Latin? It’s about death, it’s sad and probably not all that inspirational. But this patient touched my heart. She was so very young. I can’t imagine how overwhelmed she was with all that was happening to her. But she didn’t let that stop her from being funny, a fighter, and yet vulnerable too. She was a beautiful girl.

She didn’t have an easy course. She failed multiple chemo regimens for her blood cancer, she received a bone marrow transplant with blasts in her peripheral blood, and she was Hep C+. When I first cared for her I questioned the ethics of transplanting someone who certainly wouldn’t survive. Her oncologist assured me it was her only chance of survival and that she had a 20% chance of cure with the transplant. When I asked another oncologist, shortly after she had passed, he just looked at me, as if I should know better, and shook his head,  “She would have had a less than 3-4% chance” he paused, giving me a hard look, “Without the Hep C.”

Atul Gawande (envy-inducing author, inspiration) has written, beautifully, about end of life care. He has noted that, ‘more than 40 percent of oncologists admit to offering treatments that they believe are unlikely to work.’ I can’t tell you how much distress it has caused me to see how aggressively we will treat patients. And how often the end of life conversation is avoided, frequently until a patient is actively dying, on the unit where I work. It places nurses in a challenging position, when we know a treatment course is futile, yet the physician continues to offer hope to a patient, and their family, and continues to treat them.

There’s a hierarchy within physician specialties and even within group practices. I’ve seen how the oncologist rounding on my floor will defer ‘the talk’ to the oncologist whose patient it is. Even if that physician is in Paris until next week and the patient will, most likely, be dead by then. I understand wanting the patient’s oncologist to have this conversation. But it concerns me that I see so many do the easy thing; avoid ‘the talk’, avoid stepping on another physician’s ego, rather than the right thing. As a nurse it is heartbreaking to see patients and their families suffer unduly. We wind up placed in a position that feels very emotionally dishonest.

And yet, what do you do when the person facing such slim odds is only twenty-one? How do you tell someone who’s just gotten their act together after struggling with drugs in their teens, who’s just starting to live her life as an adult that she’s going to die? For that matter, regardless of age, what do you do when the odds are between life and death? It’s easy to pass judgment when the choice of trying to save a person’s life isn’t mine to make. I can lose sleep just thinking about the responsibility of such a decision. God knows I’ve lost sleep over a lot less.

As fiercely as I’ll fight to advocate for my patients to ensure they’re truly, fully informed of their diagnosis, prognosis and treatment course there are so many things in our lives that are beyond our understanding. And if you have a blood cancer diagnosis, that really might be a blessing, not knowing everything that can go wrong or how dire things might be. It’s a balance, determining what part of ignorance is due to a physician not being forthcoming with a poor prognosis, versus a patient with limited understanding, versus a patient actively choosing to avoid the truth.

I’m trying to become more comfortable with the certainty of life’s unpredictability. And how we are all imperfect in response to life’s struggles. Though, truth be told, my imperfection rears its ugly head in my obsessive desire to understand why, to figure out the puzzle and fix the problem. But grace lies in acceptance of what we can never know. And making peace with being broken. I’ll end with another quote by Victor Hugo, ‘The greatest happiness of life is the conviction that we are loved – loved for ourselves, or rather, loved in spite of ourselves.’

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