I helped manage a post-surgical case a few months ago when I was working in the ICU. It was a messy case, and the guy’s abdomen was a catastrophe. (To be fair, the surgery is a type that’s very technically difficult, and it’s usually only done out of desperation, for a patient that’s pretty much dead anyway.)
But the surgery did not fix him. And there were complications. The man spent every day, all day, lying on his back in an ICU, depressed, in pain, with drainage tubes that later proved to be unremovable protruding from his abdomen, and barely ever speaking two words at a time.
Completely conscious. Completely aware.
He died a year later, under the care of the group that worked the month after I finished there.
I could feel nothing but relief.
I was out for drinks with a buddy of mine from the surgical program the other night, and I expressed disappointment that the surgery had been done at all.
“But it bought him a year he wouldn’t have had otherwise,” she said.
Which is true.
But you won’t be able to convince me that there was anything good about that.
We’re really bad at death in this country. Medical technology is just to the point that in some cases we can preserve life indefinitely….but not to the point where we can preserve the quality of life in all cases.
This puts doctors in a really, really tough position. The culture we’re in pressures us to fight, fight, FIGHT to preserve life AT ALL COSTS, and the flipside to that culture is the perception that death equals failure.
My religion teaches me to hold life as sacred above all other things. It’s one of the reasons I’ve stayed religious, even though I’m closer to agnostic when it comes to the whole guy-in-the-sky-with-skycake question. It’s one of the reasons I find medicine so fulfilling.
But practicing medicine often puts me in a position to see that sometimes standing in the way of death can lead to such desperately unnecessary suffering. That it’s a fine line between respecting the sanctity of life and accidentally twisting it into something truly horrifying.
Sometimes, the suffering just can’t be justified, even in the service of preserving life. And we’re not very good at admitting that. None of us are. Not patients, not families, not nurses, and certainly (especially?) not doctors.
When I was on Night Float a few weeks ago, I was notified by the nursing staff that one of the patients I was covering was dropping her blood pressure. She was 98 years old, and had been deteriorating in the hospital for a number of weeks. Her death was expected. One of her daughters signed a Do Not Resuscitate (DNR) order, releasing the medical team from the obligation to use all means available (CPR, intubation, etc) to extend her life as much as possible, at whatever cost (dignity, the privilege of dying peacefully, etc).
So I called the number in the patient’s chart to notify the family that she was decompensating. Whereupon I was informed that the patient had FOUR daughters, and three of them did NOT want the DNR order, there was NO advance directive or legally-designated surrogate decision-maker, and that they were on the way to the hospital RIGHT NOW, and that I had better do everything I could to keep her alive until they got there!
When they got there, they were distraught. They were angry. Understandably so; their mother was dying, and someone told the doctors not to do anything about it! And here I was, alone, the junior member of an overnight coverage team, knowing that this patient’s life was truly and honestly at its end.
So I found a conference room, and we all sat down. And I explained the situation to them. And I told them exactly what resuscitation entailed, and why I thought their sister had given the order.
You see, CPR isn’t what you see on TV. On TV, it’s this magical ritual that calls a dying soul back to life. Someone presses gently on an actor’s chest, yelling at them to live, LIVE! Paddles are rubbed together, actors twitch dramatically on tables, hearts restart like jumped car batteries, and people go back to their families, alive and whole, by the next commercial break. Fantasy CPR is quick, clean, and has an 85% success rate. And that’s what people expect, because that’s the only experience they’re exposed to. The stories we tell each other are so powerful and attractive that they end up shaping our realities.
Real-life CPR is ugly. It’s messy. Fluids spurt everywhere. Large needles are dug over and over into sensitive areas, desperately dowsing for access to a failing circulation. Ribs are cracked. Heads are cranked back for tubes to be shoved down throats. Doctors and nurses press around the bed in a nearly suffocating pack. The energy in a room like that is negative, and feels desperate.
And CPR is only successful about 15% of the time. Mostly on young, healthy patients.
That means 85% of people die, or suffer irreversible brain damage. Once I was talking to one of the chief residents about how I was nervous about messing up during a code. The chief told me that in a code, there isn’t really such a thing as messing up: the patient is already dead. No one expects anyone to be a miracle-worker; a true success is a pleasant surprise. (He also told me to review my protocols the night before a call, so I wouldn’t “mess up” in the sense of not knowing what to do when.)
For the family in the conference room, I demonstrated chest compressions on the table, exactly how I would have to do them on the 98-year-old lady who was dying in a room nearby. I’m a small person; I have to throw my entire weight on a person’s chest to get their heart to compress adequately.
I told the family that I would do that to their mother if they asked me to, and try to wring a few more minutes (or however long it turned out to be) out of the end of her life.
I also told them that if they asked me to, I would stand back and allow her to die at the age of 98, in a quiet room, surrounded by family instead of jabbering doctors.
They let the DNR order stand.
She died peacefully, in a quiet room, with her daughters holding her hands. And no doctors.
Which is probably what she would have wanted for herself, if she would have been able to tell us.
But I know the other side of it, too. Because when my family looked to me for guidance, I could not bring myself to request a DNR order for my grandfather.
This is hard stuff, guys. This is HARD.
It’s hard on patients. It’s hard on families. And it’s hard on medical staff.
And as a culture, we’re just not good at dealing with stuff like this. And we’re not good at talking honestly about it.
I love palliative care programs for this reason. This is a relatively new movement to try and take a more healthy, less desperate approach to death. It’s focused on alleviating suffering, not just extending life. It’s another tool in the toolbox of modern medicine: the ability to recognize that sometimes the blind preservation of life is not in the best interest of the patient, or not even what they might want for themselves if they had the ability to tell us.
Because that’s what it really comes down to.
We just have to figure out what is best for the patient.
There’s no one solution to this. No one has answers, no one knows what’s best. We just have to be able to talk about this, and trust each other, and blindly fumble our way into the dark.
Holding hands, if possible.