The Difficult Conversations We Have to Have

I'm sure we've all had that one patient who comes in sick as shit and is still a full code and you go... wait, what the fuck?

What the actual fuck??

I recently had a conversation, sparked by a post on Twitter, about these patients and their family members who come in completely clueless about the disease process, why they are sick, why they don't get better, and whether they will ever recover.

Wayne ‏@Toaster_Pastry 14 Nov We could probably reduce 1/2 of the medical wrongful death lawsuits if patient's families understood the big picture.

This sparked a discussion on Palliative Care Teams and their role in offering treatment options to patients and family members. Palliative care teams are great at this, in my humble opinion, but they aren't there at 0300 when you have to intubate that patient with end stage uterine cancer and mets everywhere who insists on full treatment even though they weigh 40 kilos and have a large mass occluding their left mainstem bronchus.

Because that patient and their family members don't-- or, won't-- understand that they are dying.

They don't understand that they will never come off of that vent. They will never get better. Ever.

If there's one thing I've learned in my short tenure as a nurse it's that there are no miracles. There really aren't. That might sound cynical or jaded or fatalistic but let's be honest, people, there is no Hail Mary in the last 5 seconds of the game of life that will save your ass from being eaten alive from the inside out by cancer.

The doctor in the tweet above prefers to have these difficult discussions with patients himself. This is understandable, and commendable. Nurses fill this role often as well. As do chaplains and social workers. And palliative care teams.

But patients and family members don't understand most of the time. My own sister didn't seem to understand the relationship of fluid overload on her heart since her kidneys couldn't get rid of the excess. As a result, she got CHF, and COPD from smoking, and cellulitis and pulmonary edema and a whole host of other comorbidities which resulted in a whole shitstorm of sick that, at the end, there was nothing we or the doctors could do anything about.

I don't know if it's because the patients and families just lack basic medical knowledge, or they think that it can't be as bad as the doctor or nurse or social worker is saying it is, or they think that we're just stupid or what. But denial is rampant. Denial should be a medical diagnosis, a nursing diagnosis, a psych diagnosis, an ICD9 billable code, a core measure, and a class in medical nursing psych tech and pharmacy school.

We're sorry, Mr. Jones, but you have a terminal case of Denial.

I used to be so down with education. It was my favorite thing. I loved sitting with my patients and talking to them about restricting their fluid or not smoking or making sure to be consistent in eating their leafy greens while on Coumadin and taking their insulin and checking their sugars every day. But then I got to working in a place where I was able to see the same people coming in over and over and over. The same CHF lady who needs to be intubated and diuresed because she drinks Big Gulps from 7-11 every day and wonders why she can't breathe. The same COPD'er who doesn't wear his CPAP at night and still smokes and wonders why he can't breathe. The same noncompliant diabetic in DKA or HHNK. The same liver patient who doesn't take his lactulose and comes in altered with ammonia levels in the 300s. And it's like... is it me? Do they not get it? What the fuck, man? Why do they keep coming back??

Sometimes you want to just grab them and say "FUCKING STOP IT YOU'RE KILLING YOURSELF AND I DON'T WANT TO FUCKING DEAL WITH CODING YOU."

But you do, right?

You do.

You code your CHF'er or your COPD'er. You wipe your DT'ers ass for the millionth time after the lactulose you pour down his NGT. You titrate that insulin every hour for that noncompliant diabetic in DKA. You do it because that's what you fucking do.

I have had to be present for these conversations many times. Most of the time it's about withdrawing care after we've done everything we could.

But how do you have the conversation with the patient and the family about whether it's appropriate to do anything? How do you look that family in the eye, for example, and say "You know, it's really inappropriate to intubate your mother because she's eaten alive with cancer and we will never get her back, ever. She will never be well."

How do you sit Mrs. Jones down and say "You know, your father has aspirated at the nursing home so many times, I know he's done it again this time, but it's probably not appropriate to intubate him again and again and again. This will only keep happening and it will get harder and harder to get him better."

How do you explain to them that, because of the disease process, they are just going down a road from which there is no coming back? That at some point there will inevitably be an event horizon and that will be the end of it? That you can't make them better, you can't fix them or reverse the damage, you can only prolong the inevitable. You can only keep plugging the holes in the dam until one day the dam's going to burst, you know?

How do you do this and make them understand it like we understand it?

But instead they steadfastly insist that you do everything. And when it plays out exactly as you said it would, they look to find fault with you, the doctors, the hospital, your care. They question your expertise. They give you bad reviews on Yelp. They write to administration. They say "You never told us." "We didn't understand." "We had no idea this would happen."

Case in point:
I admitted a guy who had been sick, went to his primary doc, and got medication for "some kind of infection" according to the family. They didn't even know what kind it was. And they said he started to feel worse but didn't go back to the doctor. And he stopped taking the antibiotics because they "weren't working." They didn't even know what kind of antibiotics they were. They didn't know what medical issues he had besides some heart problems and blood pressure problems. They didn't know what medications he took, just some "water pills" and a blood pressure medication. Because he had heart congestion, which they thought was like sinus congestion (because they both had the word "congestion" I guess?) they told me he took a lot of sudafed, they knew that much. Well, anyway, he was found down in the bathroom with agonal breathing.

The ER docs tried to explain to the family in the ER that, look, this guy is on his way out. (I'm sure they were a little more gentle than that, but that's the gist of it.) But the family insisted: do everything. So they tubed him, got him a central line and a little Levo and Dobutamine. His white count was in the 30s, lactate was 11. Lytes were all fucked up. Chest x-ray was whited out-- he had vomited and aspirated. Guy was on 100% with 18 of PEEP and his sats were still 88. Got him over to the ICU and he was just a mess. We couldn't ventilate him. No urine output. Mottled skin. Fixed and dilated. So the conversation began again, this time with our ICU docs and me. And the family still insisted we do everything. Even though we explained in detail what was going on. They thought he'd be fine. They thought we didn't know what we were talking about.

And then he coded.

And you know what the wife said?

"What did you do to him??"

What did we do to him?? We put a tube down a dead man's throat and breathed for him and gave him medications in that gigantic IV in his neck so that his blood pressure would be more than 70/30 and so that his heart would beat better LIKE YOU INSISTED.

And so as we're coding him and I'm doing chest compressions, the wife is screaming "What are you doing to him? Is he dying? Is he dying right now?!" I wanted to scream at her, tell her, "He was dead when he came in, ma'am. He should have gotten a morphine drip and been given the decency to die in peace." But what the doc said was, "Yes, he is."

After rounds of CPR and shocks and Vfib and PEA we told the family there was nothing more we could do. And the wife accused us of giving up too soon. She demanded we try again. She left the ICU cursing our names, angry that we couldn't save him.

What else could we do? What expectations did she have? Why didn't she understand what we were telling her?

Come to find out he was a noncompliant CHF'er with diabetes, a smoker with COPD, drank to excess. Had multiple inpatient visits. The dam finally broke for this guy.


So what do we take away from this? One nurse in the discussion said "Advance Directives!"

Advance Directives are great, but not so great if the patient doesn't understand that their care is going to be futile and checks "I want everything done." We can't coach them when they fill it out, either.

What are your thoughts, Dear Readers?

Love,
MoJo

13 comments:

  1. Okay. This thought is ridiculously undercooked, and I am certainly NOT trolling for an abortion debate here, *but*...

    ...I wonder how many people would change their minds if they had to watch a 4 minute clip showing what usually happens in a typical code. I bet it would be effective even if the clip were mute, with just procedure titles up on the bottom of the screen. I find it remarkable that government forces patients to view an ultrasound if they want to have an abortion, but you can go to a hospital and demand the million dollar intervention on a loved one (who has to actually *endure* these awful procedures, and you don't) with a bare minimum of understanding.

    My loved ones think I'm crazy, or morbid, (or crazy morbid), because periodically I remind them to please, please, load me up with morphine and pull the plug when it's time. I wish they understood.

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  2. No, that's an excellent idea. If more people saw what happened during a code? I'm sure less people would want to be coded.

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  3. This is why health psychology fascinates me. I think part of all this is medical literacy and part of it is that some people are very emotional decision makers. I get really, really pragmatic when it comes to human medical stuff - "What do they have? Is it treatable? If it's not treatable how long will they live?" and then I just accept whatever the reasonable range of expectations is. Especially if the person is old, I expect them to die more than I expect them to live, because dying is a thing old people do.

    Contrast this with when my cat is sick - I lose my ever loving mind. I am a jittery weepy mess. I don't think I'd blame the vet if something ever went wrong but I could see myself screaming incoherently about "WHAT HAPPENED TO MY BABY" or something. So that part of me understands the freaking out family members. They can't accept that there is no control over the universe. They need to believe for their own mental health that there is always hope, there can always be a hail mary or a miracle.

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  4. These videos need to be shown in every ER, in every oncology office, and in every cardiologist waiting room. We'll save millions in healthcare costs, guaranteed!

    http://www.acpdecisions.org/

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  5. Exactly to the point! "Do everything" they say, not knowing what they are even signing up for!! It's the runaway train of wasting resources, time, effort on fruitless situations. I encounter it every single week I work and it makes me crazy! The expectation that we can "fix" what you took a lifetime to break is absurd!!

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  6. In all the years I've been an icu nurse, I no longer think the answer lies in advanced directives, or in the visual spectacle that is the stereotypical end of life multiple co morbidity code . The issue is a culture that in the wake of all the wonders that western medicine has helped to resolve, has abandoned and even rejected the concept of death. As a culture we have stepped away from the notion that death is an inevitable part of the evolutionary process. Up until the beginning of the 20th century, people waked their family members in their homes, and life expectancy was lessened by 25 to 30%. Then came vaccines, abx, progressively invasive and noninvasive complex surgery, dialysis, cvvh, Neuro science, transplant surgery and a whole laundry list of other death avoiding measures. What resulted was the creation of a culture who refuses to accept death at any cost. I think the answer somehow lies in reconnecting ourselves with our own mortality. People need to get back to understanding that death is truly inevitable, and that western medicine is limited in the answers it can provide. The expectations need to be lessened, and the realization that prolonging the suffering which ends in the inevitable, heightened. Peace, love and a wonderful holiday season to all.

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  7. Thanks to "miraculous" medical treatments, my father has survived seizures, strokes, a lifetime of alcoholism...you name it. He's currently on hospice for end stage dementia and spends his days drooling and babbling in bed. For the past year and a half. An end he never in a million years imagined. If he still had the mental capacity to put an end to it himself, he would. For now, he's trapped and I hope to god he isn't aware of what has happened to him. All of this to make a point about denial...every time he runs a fever, my response as a nurse is "YES. Finally". My mom's is to call the hospice and insist on abx. She and I have had countless conversations about the progression and hopelessness of his condition, yet she continues to hold out hope. Even though she knows he would not want to live this way and if she were given the choice, she would not want to live this way. Timmy Rogers above says regarding creating a culture that refuses to accept death at any cost...that is so true. The "blessing" of medical science and advances of our time is also our biggest curse.

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  8. I can understand your sentiment about people not understanding that death is coming and that others are to blame. I once had a patient who for at least 4 months would have periods of decreased LOC and would have apnea that would border not breathing at all - then he would need to be intubated (moved off the floor to ICU) (sometimes coded and thus all the rigamarole that ensues with that) then eventually weaned and put into step down then eventually the floor and this would repeat itself. Now as we (health care professionals) know, everytime a person stops breathing and needing to have this chest pounded on so that blood flow goes to his brain - this results in brain damage... so no wonder this guy lost the ability to regulate his own breathing. So when he finally coded for the last time - the family was still flabbergasted that this was happening and that the health care team couldn't explain definatively why this was happening and therefore they would NOT sign a DNR and insisted that he continually be revived. Such a sad state of affairs.

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  9. Excellent points above. Also, people watch TV shows & movies that show the comatose patient opening his eyes & everything is back to normal immediately. Miracles occur & all is well within the hour. We had a family that assumed if the patient was taken to surgery, all would be fixed-they couldn't believe that he died on the table. We are more compassionate with our pets. People just can't/won't accept the inevitable & we are forced to torture patients. Unfortunately, I still don't have any solution, just to try to @ least educate & inform our own families.

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  10. No one would believe the videos. After all, don't you watch the medical shows on prime time TV? They shock the guy in full arrest and he sits up, talking coherently, and not saying "OHSONUVABITCH MY CHEST FUCKING HURTS!!!"

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  11. I agree with you - I really do - right up until I don't, and here is why. Well, first, in cases like this I totally agree with you. Unfortunately I have just seen first hand how this mind-set can easily go too far. I'm a healthcare provider with just over 25 years experience and my wife is as well - although she's been more in management for half of it (as have I) we both have direct street and patient experience. My grandfather landed in ICU and was seen the exact same way. "Grandpa has had a massive stroke." says the doc. "Then why is his B/P 70/30? That's not typical of a stroke," we say. On and on it went. We told them, look, he was a very healthy 85 year old cleaning the gutters of his two story house on a ricked extension ladder a week ago, we say" "He may have been a healthy 85 year old but he's 85 and 85 has caught up with him. We really would like you to consider making him DNR." And on and on it went. "Will you send him to CT scan to confirm the stroke?" "We don't need to confirm the obvious." and on it went. We refused DNR. They gave him fluids but didn't have to intubate. They brought up the DNR question again at the end of the day. We still refused.

    At this point we might be one of those family's you are talking about. He was on a dopamine drip and pretty much unresponsive, with a pulse of 120-140 and BP at best of 90/50 following fluid bolus and 70/30 after that. "We believe he has sepsis." was the latest after the CT scan we finally demanded was negative - although they also said it may not show an early stroke but never mind that stroke stuff, it's sepsis now. Sepsis?! my wife said, where in the hell would he get sepsis from?

    Oh but wait, he's awake and talking now - still sleeping and still diminished LOC but mumbles appropriate answers - complains of abdominal pain now that he can talk or mumble. His B/P is now 100/70 without a fluid bolus. We didn't hear any more about DNR after that. I'll cut to the chase now, he had a retroperitoneal bleed. It clotted by itself (after they appropriately stopped the heparin drip they started for the "stroke") and within a week he was back home - within a month back cleaning the gutters on that damn old ladder - much to our dismay.

    Sure, poor healthcare was a part of it but I actually know this doc and he has a great reputation. He had tunnel vision. They all did. The nurses sat with us and tried to convince and "educate" us - all with their tunnel vision of the 85 year old who has lived a good life and needs to die in peace. Now this was not a at deaths door miracle, not to me, not to my wife and certainly not to you. It was, however, to my grandmother. She has no medical knowledge and doesn't trust doctors as it is. "They told me he was going to die and he was saved." Perception is reality.

    My long winded point with this very true, very real story is DNR most certainly has it's place. unfortunately sometimes we are sooooooo quick to go there - no different than many are sooooo quick to pull the drug seeking lever on the patient who really is just in pain and could care less how you relieve it so long as you do. Just have to be careful we are not putting DNR in place before it really should be. I just gave you one example as to why. This happened over 15 years ago. My grandfather went on to live another 12 years!!!! 12 years from the time they wanted him to be DNR. He survived an actual stroke, a broken hip and hip replacement and finally died of MRSA pneumonia at age 97. We made him a DNR and let him die at home in piece.

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  12. I'm more familiar with the situation that exists in most european health systems - the doctor in charge of the patient's care will discuss the options with the family and patient, but needless CPR/etc will not be performed even if the family requests it. It might be that culturally we're more accepting of death - it would be very common to see DNR/Not For Resusitation forms in the charts of very ill people who just would not benefit from CPR.

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