Life. And Death.

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.

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Published in: on July 5, 2011 at 12:42 am  Comments (14)  

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  1. It IS hard stuff. Like you said, there’s no one answer. What’s worth it for one person isn’t for another, and no doctor can be expected to make the right call for every patient.

    I remember my CPR training for working at a group home- I threw myself into the compressions and the training dummy’s ribs went POP, horrifying everyone in the group- and the trainer said that was almost enough force. A lot of CPR illusions died right then. I wish these procedures were more commonly taught!

  2. I worked for a year as a chaplain resident in a hospital in San Francisco, and it was a chance to learn a lot about many things, including life and death issues. As a chaplain, we were involved in all of the conversations about DNR, end of life care, palliative care, and so on. We were the ones educating patients about Advance Directives and available for families making hard decisions as well as to clinical staff in the wake of things like messy CPR in the ICU (which was one of my assigned units).

    I was very lucky to serve at a hospital where the chaplains were integral parts of the interdisciplinary team and involved in many levels of patient care, but especially in and around dying and death. Even in a very secular city with patients often openly hostile toward religion as such, I think we were able to help ameliorate some of what you are describing, coming from a very different point of view where death is concerned. Not necessarily specifically religious, but without the training that encourages doctors to fight death as an enemy (which in many circumstances is exactly what I’d prefer a doctor to do).

  3. It’s great when you post about using medicine in fiction, but posts like this are why I love this blog. I’ve experienced this (both ways) from the patient side of the equation, but I never get to hear the doctor’s side of it. Thanks.

    • To be fair, this is great insight for character and plot development in a story with a terminal patient.

  4. Will you be my doctor?

    I went through a lot of the hard decisions you describe when my mother was dying (just shy of her 91st birthday.) She had a living will, she had a DNR, and my siblings and I had talked it all through. Yet we were being told by her doctor that none of that was relevant. This wasn’t the end. She’s a strong woman. We just have to get her through this and she’ll have lots of good years. And I’m looking at my mother and I see a woman who’s dying. And her doctor didn’t change his tune until the one kidney she had left started to fail.

    We were fortunate to be able to move her to a hospice unit that let her spend her last days calm, comfortable, peaceful, happy and loved. I can’t say enough good things about the care she received there.

    I was fortunate — and I was saddened that my siblings didn’t share the experience — to meet with a nephrologist months earlier who was willing to give me an honest, straightforward, comprehensible answer to the hardest question I ever asked: what does dying of kidney failure look like, if that is the choice we have to make for our mother?

    But I’ve struggled with so many doctors, both as a patient myself and as an advocate for my husband, who seem to want to do things just because they can, whether there’s any benefit to be had or not. It has made it very difficult for me to trust doctors.

    Let me know when and where you set up your practice. If I’m still around, I’ll be looking for you.

  5. I had a teacher once who said that in Hebrew the word for doctor comes not from “healer” but from “letting go”. Even though it’s not completely accurate, I tried to remember that with the families I met. It is still the one of hardest decisions you can make.

    (When my grandmother died in the ICU, intubated due to pneumonia, nobody asked for my opinion, and I never asked if they resuscitated her or not. My mom told me she died only the next day).

    Elodea

  6. Truly a moving piece. Thanks for writing it.

  7. Thanks for this moving piece. You sound like a great doctor who tries to do the right thing even if it’s hard.

  8. Thank you.

  9. This was beautifully written, and the last line could not have been more perfect.

  10. Hi.
    I’ve been reading your blog on and off for a few month now and I like it a lot. But I’ve never liked an entry better than this one.

    Please, never change. Respect your patients wishes and be not afraid to admit that, yes, doctors are not God, and they can’t heal all.

    When I was in nurse school, some years before there was anything like ready-to-sign DNRs, we had a patient who had barely survived cancer and had a completely failing heart. He was about 80 years old and just through with life. He knew it. His family knew it. They were there, 24/7, he was at peace and it was all as well as a situation like that can be. When I arrived for a sunday morning shift, he was gone. I asked who’d been with him when he died and got the answer that he wasn’t dead. The day before, one of our senior physicians came back from holiday and decided to come to the “rescue”. He had that poor man moved to ICU, convinced the family that their father didn’t need to die yet, and that it was for the best. The man died about two weeks later, in a cramped ICU, with tubes sticking out everywhere, without his family. Everyone thought there was nothing wrong with that. It was one of the reasons I didn’t finish nurse school, I didn’t want to be part of a system like that.

    Sorry for ranting and the layman terms, I’m german and my medical vocabulary isn’t the best.

    • Hi, Alex! Welcome, and it’s so nice to have you! I’m glad you’re enjoying the blog.

      It’s a difficult system, for sure. I’ve thought about leaving many times, myself. Depends on the day. Everyone does just as much as they can.

      But if you’ve been reading for a while, you know that I’m a big fan of ranting. And I’m a HUGE fan of layman terms. Big doctor words are only needed when (a) you need maximum precision or (b) when you’re talking to a judgmental doctor.

      And I’m always incredibly impressed by anyone who speaks more than one language. Thanks for replying in English, as I guarantee I wouldn’t be able to understand you if you wrote in German. That was very considerate of you to go out of your way like that, to make up for my ignorance.

      Thanks for reading, and thanks for writing!

      Dr. G

  11. Thank you, thank you, thank you so much for your blog. I only just found it the other day when someone posted a link in one of the LiveJournal communities I follow that is dedicated to answering medical questions for fan fiction writers. Your blog entry about when to shock (and when not to) and this one especially were very helpful for me personally. And since I don’t want to get hit over the head with a wet chicken, I will definitely heed your advice and not shock a flatline in my stories. I promise!

    If you’re so inclined, you can now read the 300-word piece I just wrote that was inspired by this particular blog entry of yours: http://tj-teejay.livejournal.com/100105.html
    It’s fan fiction for a TV show called White Collar (airing on USA Network). And I hope I did the point you were trying to make justice.

    • I liked it a lot, Tee Jay! Well done! And thanks for the shout-out.

      Wow, fanfiction…..based on one of my posts! I can’t stop grinning like an idiot!

      😀 😀 😀 😀 😀 😀 😀 😀 😀 😀 😀 😀

      Dr. G


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