They so often come in, naive, having never experienced intubation or resuscitation. They are afraid of death. They are afraid of their disease. They are strong and fat and not yet worn down. They have good hearts and good immune systems. They will endure hell if it means they can go back to being alive. It's wonderful when this happens. Except when it doesn't.
A catastrophic PE
, a lobectomy for lung cancer that should have been routine. They are motivated. They are terrified. They want everything done.
So we do everything. Tubes in every orifice. Feeding, venous, arterial, endotracheal, urinary. We crank up the oxygen and administer abundant amounts of PEEP
. We defibrillate, we fluid resuscitate, we dialyze
, we pour in antibiotics and inotropes
and the good ol' Vitamin V
. Family comes daily. They hold hands and pray and wish and stroke hair and hope and speak to silence.
But what if hope is not enough? What then?
Then there's heart attacks that were unexpected; strokes, more PEs, opportunistic infections
, chronic infections
and muscle atrophy. Weakness sets in. Anxiety and panic gives way to drug habituation as the medications that we use
to keep them settled
manifest their less-than-desirable side effects
. Hope grows dimmer as the weeks and months stretch on. Family are coming less often. The patient stares vacantly off into space, when they're not awake. We may diagnose them with depression and add yet another drug to the list.
Eventually the acute phase of their illness passes, and we are on to the chronic phase, the rehabilitative phase. This phase takes 4-10 times longer than the acute phase, but only the acute phase is sexy. IV pumps and machines which beep and swish and whirr, these are sexy. People yelling things like "clear" and "stat", this is sexy. Medevacs and ambulances and salvage therapy
are sexy. Nobody makes hour-long tune-in-next-week broadcasts that detail the weekly painstaking struggle of a six foot man to stand up out of bed unassisted. Each week, with shaking arms and legs, a belt wrapped about his waist, two slight girls help him stand unsupported for a brief period, before he collapses back into bed, sweating, red-faced, and out of breath.
There's no alive like there was before. ARDS
has scarred your lungs and given you a permanent lung disease. A stroke has left you with hemiparesis
that you must now struggle to overcome. Those two heart attacks you sustained while under deep sedation and riding the ventilator have weakened your heart, and so even the rehab is more difficult than it was before. Perhaps you can no longer swallow, and so you can no longer eat. Perhaps you'll be coughing through and eating through a tube for the rest of your life.
They're thin, sometimes gaunt, now. Weak as kittens, losing weight in both fat and muscle mass. All sexy with the unkempt hair, the ass-exposing gown and the TED stockings
. What once was a terrified young man is now a jaded old one, one who has been through hell and back and discovered that it's worse than dying.
So we get him home. Or close enough. He's ecstatic, gleeful, delirious with joy at the thought of eating something that didn't come out of a hospital cafeteria, at the idea of a change in scenery, at the possibility of sleeping in his own bed. It wasn't meant to be.
As sometimes happens, he turns on his heel 180 degrees, and starts to crump. Feet start to move faster. The bags under the family's eyes become a little more tattooed on. All the toolboxes come out, phones come off of the hook, and then finally --STOP.
"I don't want this anymore," he says to his daughter, an RN. "I've had enough. It's enough."
The maw of hell is agape, waiting, and the man who was so terrified to die is no longer afraid of death.
"He was a changed man," his daughter will tell me later, over a cigarette and drinks. "The man who went into the hospital was afraid to die. The man who died was not afraid of death."
He struggled, and struggled, and struggled. He improved marginally, and got stronger. He was nothing like his old self. His expectations were shattered. We're left with what reality can give us, and the reality is that flesh is weak, and has a finite limit. Six more months of hell?
We can save his life, and take away his chance at communication. We can prolong his life, but he won't be awake to remember or enjoy it. We can let his family watch him suffer, and try as hard as we can, in the face of overwhelming odds. We do it. Frequently. It's what we're asked to do.
But when someone who's had the tube out says they don't want it back in, because it's a fate worse than death? We could choke off his voice and leave him until he becomes fully paralyzed, until his organs fail him and it's impossible to keep him alive. But he knows, oh, how he knows what's in store for him. Moreso than his family does, or any of us do. He's done it all before. He doesn't want to live like that.
There are many diagnoses that are death sentences, waiting until the body fails, hoping you're coincidentally ready to die when your body's ready to let you. We can take that time we spend waiting to die to love our loved ones, to be joyful and happy, to tell our family that we love them.
I'm always a little sad when someone dies without getting to say goodbye. And when people say "I never should have", we always blow them off, as a 'but you did, and we're here, let's move forward.' We get so focused on today, and on what we can do today, what we can fix today, that it's easy to forget about the several months ahead. He will eventually get weak enough as to be unable to move or speak. His enjoyment came from eating and talking with his family. He can no longer swallow -- will we take away the one thing he has left?
Or will we tie his hands down as he pulls the ventilator off, thinking him confused? Will we sedate him into forced ventilation, assuming we know what's best, assuming this is how he wants to live? Locked-in, alone, in the husk that is his body? When we've given him a diagnosis that he knows is him waiting to die?
I believe in personal autonomy. I believe that when a person who's spent a year and a half in ICU says they want it to end
, this isn't simple suicidality and mental illness, this is them saying they have had. Enough.
So we pull over the warm blanket of Dilaudid
, and let the family pull up a chair. His family has discussed amongst themselves, in coalition with the doctor and the manager of ICU and everyone with his best interests at heart. Everyone agrees. This is not how he wanted to live his life. He wanted to go out and play hockey, he wanted his grandkids to climb up on his knee. He wants to be able to laugh, not just lay paralyzed while tears roll down his face.
And eventually, the decision gets made. To stop. Enough.
It's sad. I'd be lying if I said I'd never mourned anyone I've had a hand in killing. I've mourned them with colleagues, in back rooms debriefing, with their family members, over drinks and laughs. The surreality of it all. Going back to work and never thinking of ICU 5 or ICU 3 or 229.1 exactly the same ever again. Ethics is something that's easy to read about and hard to practice. It's easy to debate and discuss and consider possibility, it's easy to say, "Well, in this controlled situation, wherein I make up all of the hypothetical details..." It's much harder when you're intertwined, when you have to see his daughter the RN in ER for the rest of your tenure at this place.
I need to feel like what I did was right for them, then, that it was what they wanted, that I wasn't causing unnecessary and undue pain, that I wasn't inflicting cruel and unusual punishment. The things I do are so terrifying and painful that they've made grown Mounties cry, a man who's unintimidated by a bloody scrappy fistfight with an ex-con, who used to have one at work about as frequently as I have coffee. I have no illusions about my therapy feeling
therapeutic. I know what I'm doing, and it hurts.
I need to feel like the hurting is worth it for them. I need to feel like I know what they want and I'm following their wishes. I don't want to read later in the notes "Patient states she does not want to be intubated. Patient intubated at 0630" because there'll be a lot of anger and oh dear, my blood pressure.
Most of the time it is worth it. But when is it not? That's a grey area the size of the arctic circle, a balance that can only be found in the moment, that is highly individual and situational and depends on having a firm grasp on all of the details. I will only do what I can. I can't take away the ALS, I can't replace a missing lung, I can't eradicate cancer and I can't fix a screwed up heart. I can't make an immune system respond. I can't force an organ to work, and I can't be Sisyphus pushing a rock up a hill only to watch it roll back down again.
I will do as much as I can until there's been Enough. And that's all I can do.