05 August 2010

More on Letting Go

Dr Gawande, in his New Yorker piece on hospice, relates the story of a young woman with terminal cancer who progresses down the pathway to intubation and the ICU at the end of her life. He writes:

This is a modern tragedy, replayed millions of times over. When there is no way of knowing exactly how long our skeins will run—and when we imagine ourselves to have much more time than we do—our every impulse is to fight, to die with chemo in our veins or a tube in our throats or fresh sutures in our flesh. The fact that we may be shortening or worsening the time we have left hardly seems to register. We imagine that we can wait until the doctors tell us that there is nothing more they can do. But rarely is there nothing more that doctors can do. They can give toxic drugs of unknown efficacy, operate to try to remove part of the tumor, put in a feeding tube if a person can’t eat: there’s always something. We want these choices. We don’t want anyone—certainly not bureaucrats or the marketplace—to limit them. But that doesn’t mean we are eager to make the choices ourselves. Instead, most often, we make no choice at all. We fall back on the default, and the default is: Do Something.

If this is true in medicine in general it is doubly true in the ER.  There are a number of reasons for this -- the position of the ER to see people at the point of transition into acute dying, the fact that we don't know our patients, the fact that we often have to make treatment decisions based on incomplete information, the fear of litigation, and the fact that we are kind of a bunch of adrenaline junkies.

The other day I saw an elderly man with a very serious illness. He had a slow GI bleed and got his hematocrit down to 15. Yes, that's not a typo: he was a functional anaerobe by the time I saw him. He was a vasculopath, and eventually he tipped over into multi-organ system failure. It wasn't until he infarcted his small intestine that the pain brought him in to see me. 

It was pretty obvious he was on his last day -- his lactate was 16, and when your lactate exceeds your hematocrit, well, that is a grim sign indeed.  He also was having an MI, and in renal failure and in early CHF.  His pH was 6.8, which is the lowest I can recall ever seeing. I got his pain controlled and instituted the standard resuscitative measures -- fluids, blood, antibiotics, etc.  Once his pain was managed he was actually lucid and in good spirits and able to chat with his family while the nurses and respiratory therapists hovered over him.

Predictably, the massive fluid bolus began to back up into the lungs and he became progressively more short of breath. The family and nurses and RTs all became progressively more distressed by his labored breathing.  At one point I faced a delegation of three nurses and two RTs imploring me to intubate. Quite frankly, that was my reflex as well. Intubation for ventilatory support is pretty standard care at this point, and I was on the verge of telling them to get things set up. But a strange reluctance seized me. With "Letting Go" fresh in my mind I said I would go talk to the patient and family instead.

I laid things on the table for them. I looked the patient in the eye and told him that this was it, that "You are going to die from this, and probably today." This is an exceedingly hard thing to say to someone, by the way. I asked him how he wanted to spend his final hours -- sedated and intubated (but comfortable), or awake and able to spend time with his loved ones, with pain medicines as needed.  This was, as you might imagine, a tough conversation and one I might well have shied away from in the past. Frankly, it would have been way easier to simply put him down, intubate him, and ship him up to the ICU for the intensivists to deal with.  The wife was not quite ready to let go, and I had to make it clear that this decision point was not going to change the outcome -- it was not giving up, only recognizing the inevitable and choosing the manner in which it would come to pass.

He chose to be awake and spend the time he had with the people he loved. We slammed on the brakes of the medical machinery and started a morphine drip. He still went to the ICU, but with "comfort care" goals and a consult to the palliative care team. 

I'm really happy we did what we did -- or more importantly, what we did not do.  It was not the path of least resistance, not at all. Some of the nurses had a tough time with it emotionally, but I think it was generally recognized that this was the best possible outcome.  This was an easier case because it was so clearly not survivable, but the many many cases with more uncertainty are in a different category, where the default to "Do Something" leads to a lot of human misery.

And I am not sure what to do about that.

14 comments:

  1. Been following your blog for a couple of months, and I just wanted to say thanks for writing about your thoughts and experiences. I'm not in the medical field, but have always been very interested in medicine. (Almost went into genetics.) This particular post on your blog is what finally convinced me to stop lurking and say hello. Very insightful and moving. I checked out the original New Yorker Piece as well and found it to be a very worthwhile read.

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  2. First time commenter, long time fan. That was a beautiful piece, and I curse you for making my eyes well up before breakfast.
    You'll know what to do the next time, even though the outcome may seem less clear: You have the difficult conversation with the patient and the family. You engage them in their medical and life decisions. That's the only way for them to die with dignity, or fight the good fight, as they choose. You help them by supplying information and insight, but the decision is theirs.
    Stay strong, have the uncomfortable moments-- they are often the life changing ones.
    queenmeab

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  3. Tough choices, but well done and well said.

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  4. Thanks for having that hard conversation. It's moments like this that led me into palliative care. There is an article in Slate today that you might find interesting: http://www.slate.com/id/2262769/

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  5. I'm one nurse that is totally with you on this.
    -SCRN

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  6. Beautiful. Smart. And really brave.

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  7. What a great post. Obviously not for the uplifting nature-but because it really echoes the struggles that ER physicians face with patients who are actively dying and can't be saved. You could have preserved the adrenaline-loaded environment and stabilized him long enough to make him someone else's problem but you didn't. As you mentioned, it was an option.

    It's nice that you took the time to sit down and present the ugly choices to the patient. And give him the time to make a decision. It can't have been easy but it was what he needed.

    As for the 'Do Something' mentality, patient education would be a good place to start. Letting patients know about directives, how to complete them and having family discussions about life & death wishes. Death is still something we shy away from-maybe hoping if we don't talk about it, it won't happen?

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  8. Well. Good for you for telling him what was going on. The "D" word is awfully hard to use at first -- and awfully hard to hear for the patient.

    My husband was a week into home hospice care (age 39, pancreatic cancer), and frustrated with his fading lucidity. I had read a fair amount about the process and I knew that the few calories he was taking in were going to his cancer, and not many were making it up to his brain. He had just stopped himself from saying something nonsensical, then he got frustrated and said, "Why is this happening??" All I could do was say, "Oh, honey. You're DYING." Even though we both knew that's what was happening, and had known for some time, it was still awful. That's the line that haunts me still. YOU'RE DYING.

    But I do believe that it's better just to use that word than to use euphemisms. Especially because the euphemisms doctors use with each other will not always register with patients. Better to be upfront and risk shocking the patients, than to dance around it and leave them wondering.

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  9. This was such a wonderful post. My Mom died of a glioblastoma and I did not get to say goodbye or talk to her about important stuff because the doctors did not impress upon my Dad that she would not survive. He went in to denial, and forced the kids not to speak of it with her. It haunts me to this day, we had 16 months but not one substantive conversation.

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  10. You did the right thing for the patient and his family, not just 'tube, drip and ship' to the ICU. You treated the patient instead of just plugging him into a conveyor belt system as some I have seen would do. That is what we are supposed to do. Keep up the good medicine Doc. You are an inspiration and this story should be a reminder to all of us who people trust with their life at any point of care to remember who we do this for.

    (from former 10 year ER/ICU/CCU nurse, now primary care PA-C 15 years)

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  11. The doctor giving palliative care inservice said there is never "nothing we can do; there is always something we can do." If it is not treatment, we can make people more comfortable. You gave something to that patient and family that is so valuable, a choice, honesty, and the chance to say goodbye.
    These will always be very difficult conversations, but so important.

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  12. Bravo!
    He's been enlightened & has embraced the power to "heal" just in another way. Tell the dying the truth. I hope this much for every patient.

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  13. Thank you for being the brave one,sincerely,thank you.

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  14. My Mom passed away in September. Her chest also filling with fluid. Later, I was told there were multiple organ/systems failures as well...

    As the medical professionals had seen the end coming, I wish they'd had that talk with my Mom and Dad. Dad wasn't (and still isn't) ready to let go but I think he'd be in a better frame of mind if they'd all had That Talk while Mom was still lucid. Instead, Dad is angry and believes they lied to him - telling him everything was going to be ok.

    Instead, they did a surgery to install a chest catheter to drain the fluid. They intubated shortly after the surgery and called the crash cart within moments of the intubation.

    I wish someone would have told me that Sunday would be the last time Mom would hear me say "I love you" rather than letting me go home believing she would be getting better.

    I have little experience with Death. I did not know he was standing in the room with us.

    Thank you for having the courage to explain to that family what was really going to be the outcome rather than putting them through the trauma and disappointment of a 'doomed from the start' last attempt at heroism.

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