I vividly remember being chided by the ICU Director in my residency during ICU rounds one morning, circa 2000:
Director: "Scott, why did you intubate this man?"
Me: "Well, Dr......he couldn't breathe and the family...."
Director: "Scott. This man has metastatic anaplastic thyroid carcinoma. He's dying. We're not in the business of ventilating corpses."
But ventilating corpses is indeed the business of modern critical care medicine. I'll leave it to you to decide whether that's a good or a bad thing. But in so doing, you should grapple with the data and the larger issues.
An article the February 20, 2013 JAMA describes ventilation weaning practices in an LTACH (Long Term Acute Care Hospital). It is a very well done study that confirms what I already thought I knew: that tracheostomy mask weaning is superior to playing around with pressure support levels. Well and good. But there's an elephant sitting on the article: two thirds of the randomized patients were dead by 12 months, regardless of whether they were weaned or not. Two of three patients were dead. Despite undergoing prolonged intensive care, receiving a tracheostomy, being sent to a veritable nursing home, and probably being artificially fed, and despite all the suffering, physical and mental, emotional and spiritual that this entails, two of three of them were dead at one year. And this is not a new finding: the data on 1-year mortality for tracheostomy patients in an LTAC in this article comport with those of other studies such as this one by Kahn in JAMA in 2010.
We need to begin, as a society, to seriously question if this is a good thing to be doing to/with the dying, which will one day include us. Namely, should we PEG, Trach (verbs), and send the dying to a nursing home for a prolonged trial of weaning from which only one of three of them will survive?
The authors introduce the subject by describing the expansion of LTACHs in the US over the last decade (from 192 in 1997 to 408 in 2006), and their associated costs ($1.3 Billion in 2006). They also note that because of the aging population, there is an anticipated 38% increase in demand for intensive care physicians in the next decade. But they make no mention as to whether these increases are desirable and appropriate. One possibility is that these increases reflect a misguided way of dealing with death and the dying.
But being alive at 12 months does not mean being well and it most certainly does not mean back at home as though the index illness never happened. The probability of being alive and breathing without assistance after one year for a patient who goes to an LTACH with a tracheostomy is on the order of 25%. The probability of being alive, breathing on your own, walking and eating and urinating normally? I don't know, but it's less than 25%, I suspect a good deal less. The probability of living independently? Less than 10%.
And I can tell you from vast experience that the majority of patients and their families, when in possession of these statistics, do not want a tracheostomy and an LTACH and all the associated encumbrances and miseries. Then why are so many patients receiving tracheostomies and going to LTACHs? Because their physicians are not arming them with these statistics - or they think they are, but they are victims of wishful thinking and patients and their families are not receiving the message that physicians think they are delivering. And why is THAT happening? Probably a lot of reasons, but I think the general notion can be summed up by an analogy I introduced at a Division of Pulmonary and Critical Care Medicine conference about 6 years ago at Les Wexner's Ohio State University Medical Center. I was dumbfounded by how little critical thought was given to the accepted wisdom that a PEG and a tracheostomy and a discharge to an LTACH was considered a success by those practicing critical care medicine. Here's the analogy I challenged them with:
Suppose I give you a superpower. With this superpower, you can resurrect the already dead, and restore them to life, but it is a life dependent on a PEG and a Trach and an eternal existence in an LTACH. How many deceased (and in peace) people would you resurrect with this superpower? A hundred? A million? A billion?
(Obvious corollary questions are: how many people, as a society, can we afford to support in LTACHs? How many people would want to be thusly resurrected? A philosophical discussion about status quo bias could also ensue.)
Silence filled the room. Nobody responded. I think they assumed I was being absurd, and this absolved them of responsibility for giving serious consideration to the issue I was raising. And this failed responsibility is how we got here in the first place. Because nobody is questioning the current status quo. Rather we congratulate ourselves for "saving lives" and celebrate the anticipated rising demand for our kind. Hooray, our disservice is in demand!
Good to see that you are still mad as hell and, furthermore, that you are not going to take it any more.
ReplyDeleteKeep 'em coming.
Love this. Thanks for your attention to the matter.
ReplyDeletetotally agree.
ReplyDeletewell I have been a medical ICU director in 2 countries ( third world and USA) and been doing ICU for 15 plus years , we are first and foremost hostages of a legal system, where professionals are denied back up by their administrators and by the medical societies , where research should be used to answer such questions, where patients should be responsible in part for their health and their non compliance, where " I want everything done doctor" is a phrase all too often heard on the phone spoken by a family member who may have not seen their "beloved " in months , where the ICU doctor is like a lost soul in the desert really with no help from anybody.....when did your hospital administrator asked u the last time if u needed help?
ReplyDeleteGood points. I commiserate with you, Sir.
DeleteI had never even heard of an LTACH (at least not by name) until my dad wound up in the hospital this last time, this time being put on a ventilator and when they tried to wean him off they couldn't so they they started talking trach and saying he would then have to be sent to one of these LTACH's I'd never before heard of; , they told us we would not be able to stay with him like I was doing at the hospital and would be rather inconvenient to drive back and forth to see him every day, so would mean he'd have to there by himself? was making for a hard decision situation, especially for long-term prognosis of recovery with the only other option they giving us being hospice/comfort care, which leads to what talked about in this article, of "possible?" certain death, certainly a not knowing how long he might survive given the chance of being able to keep him on ventilator locally; they finally, at that point, gave us a 10 day option, with there being other issues such as needing and being given dialysis, with the goal of it, at least initially, hopefully "jump-starting" his kidneys, which, after 3 times, not happening, getting back into the previous issue, only with more pressure, actually, this time of the hospice route, rather than pressure to LTACH, which in some ways just made it worse and made us more want to go that route to at least give him a chance but they weren't even wanting to do that anymore really at that point. But another issue is that for all that they told us they couldn't even tell us if he could even go to the LTACH in the first place; that the LTACH itself would have to decide if they would even admit him; that they would have to come assess him first, so to begin with wanted to see if they come do that because if they wouldn't take him it would all be a moot point anyway and learned later that if wanted to keep him on dialysis, which would be no point in going to LTACH otherwise, would be even more difficult to send him there anyway, with far fewer beds for patients needing both trach management and weaning as well as dialysis. And all of that without even taking into considering his overall medical diagnosis and condition he was in before the incident that led to this situation, which is what I'd wanted to be included in this decision in the first place. It took the dialysis not working to finally get that doctor to even begin to ask those other questions even though he somewhat knew about his underlying medical condition but not how he actually had been before this incident; he had not seen him for about 6 mos., during which time he'd had some other situation occur, which had caused him to have considerably declined during that time. He finally said that, as somewhat stated in this article, that being the case, that even sending him to LTACH, he would not recover past the point that he had gotten to before this acute incident, and therefore not really a good plan to send him to LTACH. btw, we did have a "brain dead" test run, an eeg, which they told us only tested for seizure activity, which it did not show; that the neurologist was basically clinically observing for brain activity; it was difficult to determine with eye contact because of his severe glaucoma; of course he couldn't talk anyway because of the ventilator; he was restrained so difficult to determine by hand movement, etc; he was severely hard of hearing so difficult to determine by response to conversation; mainly had to observe by reaction to pain, mostly when inflicted by wound care treatment, which did seem to indicate definite brain activity and there were occasions when he was able to speak over the vent to seem to say he basically just wanted to go home and get away from all the interventions. He had expressed such before this situation began to occur that he had not wanted to live in such a way.
ReplyDelete/Donna
Thank you for this candid narrative. It is my strong opinion that most doctors just plain SUCK at presenting reality in an honest in candid way that allows families to make rational and pragmatic decisions for their illness-stricken loved ones. I regret that you had to go on this roller coaster ride. I hope it turned out OK in the end.
DeleteNYT LTACH Article, June 24, 2014
Delete