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 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?