Sunday, March 19, 2017

"I want to go home. It's so very cold here."

Yesterday, a patient, shaking, naked, and bereft of the control over his body that he's had since toddler years told me, "I want to be normal. I want to be me again. I want to go home. It's so very cold here." The extent of conversation he'd had to that point was caregivers instructing him to get back in his bed, because he's too weak to be up. We are right.

And wrong.

Right to recognize the limitation of his body, when his mind can't. Wrong to not explore the capacity of his mind and body. Wrong to not fight for a more humane approach to his health, lack of health, and inevitable death.

Last week, in a similar situation, I asked an oncologist why we weren't having a conversation with the family about hospice. He replied, "I'm not ready to write him off yet." In fairness, this is a very compassionate doctor. I looked him in the eye and said, "I'm not writing him off either. I'm facing all the potential directions his illness can go, and wanting to keep an open mind to all the possibilities for how we treat him. He will die. How will we treat him until he does?" An hour later, the family came to me in tears - adjusting to the conversation the physician decided to have with them, and determined to bring meaning and comfort to whatever days they had with their dear one.

We stand over our patients, literally and figuratively. We address them with the same tone we do our children. Dismissive. Concerned. Coaxing them back into clothes, into bed, into the masks and tubes and lines they "need" to maintain the numbers we want to see from them. We neglect to find the strength in their weaknesses.

I crouched below this fellow human, and told him, "you're so very sick. And, you're in the hospital. Please tell me what you want." He looked into my eyes, and expressed the thoughts above. He talked to me of his "most wonderful wife."
When I swung into his room, just ten minutes before, trying to catch him from falling, and simultaneously direct his body back into the bed, he struck out with his hands and arms. Disoriented. Disrupted.

There's something here, on a grand scale about how we treat all humans. How we let every person maximize what they have. How we sit in silence, waiting for someone to reveal their pain, their wants, their needs.

There's also something very direct here. Talk to your loves. Learn what they want in the waning years. Tell them what makes life so livable and meaningful for you.

As for me: don't chase the numbers. Keep me close to the lives that bring me purpose and joy. Love me with presence, not interventions. And, listen to me. Ask me questions, and wait long enough for a disorganized mind to gather a response. That's living, now, and always, for me.

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