Lessons Medicine Nonfiction Reflection

Repost: Control.

I wrote the post below over ten years ago during my last year of medical school. I was on an elective hospice rotation. This came to mind this weekend after I visited a mentor who is dying from cancer. Someone from a hospice service also visited him while I was there.

I will miss him.

We all die.

Really. We all die.

And people know this. Sort of. Kind of. Maybe.

Some people accept this fact that yes, we all die, with calm grace. Some, indeed, genuinely welcome death and look forward to shedding this mortal coil. Some don’t necessarily want to die, but they recognize the inevitable fact and actively choose to spend the rest of their days living, not dying.

And then there are people who fight death. Or maybe it’s not death itself that they fight; they fight their mortality. They struggle with the fact that life will end. They don’t want to relinquish control over their existences. They want to know how much time they have left, what exactly will happen, and how things will progress between this moment and that last breath.

Family members of dying people (but really, aren’t we all dying?) seem to feel more—sadness? anger? frustration?—whatever; they often seem to feel more than the patients. The Type A’s get super Type A, jumping all over the place, asking How? When? Why? What? How much? How often? How quickly? How slowly? Can I do this? What about this? And that? The angry people get angrier, but I don’t think the core emotion is anger. The sad people try not to feel more sad, but their cheery smiles are obviously superficial. And the crazy people just get crazier.[1. I wince at what words I used to describe people in the past. I hope the wincing means that I’ve gained some wisdom over the years.]

It’s not fair to say that this grief is entirely selfish, but in a way, it is: If the loved one dies, it is a theft from the person in question. There will no longer be any shared moments, quiet glances, bursts of laughter, or shouting matches. And if the loved one dies, it only reminds us of our own mortality.

Because we all die. We just don’t believe it.

A hospice nurse and I sat in a family’s house for nearly an hour this afternoon. The patient, an aging woman, lay on the gurney in the living room. She’s had multiple strokes and doesn’t interact with the world. Her eyes fix upon yours, but she’s not looking at you. Her pale lips, smeared with Vaseline, are parted. Her left foot writhes in the bed, as if forming cursive letters on the white sheets. Her skin is cool and she doesn’t really react to the touch of another human hand.

Her daughters keep extensive notes about her: How much did she pee? poop? sleep? Has her skin changed color? Is she throwing up? How much morphine has she gotten? (They won”t say “morphine” in the room; they call it “M”.)

They don’t want to give her too much morphine because they fear that they will kill her. And yet they want her to be comfortable—and the grimaces on her face suggest that she is not. The daughter who is administering the morphine will not—cannot—give her any more.

“It’s about HER comfort, not YOURS,” her sister said, trying not to shout at her.

“Well, you don’t want to give it to her, so I am, and this is what I’m comfortable with,” the sister replied.

“I know she’s declining… I know she is…” and yet she cannot accept this fact completely and buries herself in her dying mother’s urine and fecal output, her blood pressure and pulse measurements, the dosages of her medicines.

It’s about control. Lack thereof, really. And to sit there, actively listen, and be present with these patients is exhausting. You literally feel what they feel, and yet you also feel what you feel in response to their feelings, and your brain is running through the algorithms of disease. So you monitor yourself while you monitor them, staying in the moment, completely unsure of how the next moment will unfold. Part of you wants to comfort them and part of you wants to scream in frustration. Part of you wants to run away and enjoy the gorgeous world outside and part of you wants to give everyone in the room a big hug. Part of you wants to give up completely and part of you wants to fight for the life that remains.

God, it is so beautiful to be alive.