Update: this post was written in November, 2022. It’s now March, 2023. My family member ended up making pretty much a full recovery, which has shocked everyone. He is almost back to his old self.
Also, if you visited this post before, you’d notice I took it down. That was after it received a lot more attention than I was comfortable with, and, more importantly, than my family members were comfortable with. Now that’s died down, so I’ve put it back up.
I’ve spent just about the last month visiting a family member in the ICU every day.
Needless to say, this has been a terrible experience. It’s been horrible seeing my loved one in the ICU and seeing my family stress about my loved one. It’s also been very difficult for me to keep my life and work on track while spending 4+ hours a day at the hospital. This latter point is why it took me 3 weeks to write my last post encouraging the FTX Future Fund to establish an IPCC report for AGI predictions, just in time for the FTX Future Fund to blow up.
There have been very few silver linings to this experience. However, one of the silver linings has been an up-close-and-personal look at how an ICU works. Now, for context, I should mention that my family member has been in one of the cardiothoracic ICU units at Brigham and Women’s Hospital. This is one of the nicest and best-resourced ICUs in the country. So, my assumption has been that the faults of this ICU unit are likely shared by all ICUs, while the virtues probably are not.
Anyhow, here’s a list of things I’ve noticed about the ICU.
1. The ICU is filled with old people. There are around 10 beds in the ICU unit that my family member is in. Due to the nature of the ICU, patients come in and out frequently, and it’s actually rare for anyone to stay as long as my family member has. Of the patients I’ve seen come in and out, I’d guess that over 90% are over 70 (including my family member.
I had been aware of how much of our healthcare is utilized by the elderly, but this really put it in stark focus. We are spending an enormous amount of our healthcare budget on patients in the last 5 or 10 years of their life. This includes every part of healthcare: nurses, speciality doctors, primary doctors, surgeons, etc. Pretty much all these patients are on Medicare, which means your taxpayers dollars are making this happen.
Or, to put it in even starker terms, the next time you have trouble booking a surgeon or even a gastroenterologist, you can remember that America’s supply of surgeons and gastroenterologists is being disproportionately used by the AARP crowd. I’m not sure if this is a good thing, but I don’t think anyone has a better solution.
2. There are many consults, but the ICU attending is king (or queen). My family member, like many ICU patients, has and had a complex case. He’s had problems with his lungs, his heart, bleeding, his gastrointestinal system, his mental status, and his sleep. As such, there have been many consulting physicians called in to advise on my family member: neurologists, psychiatrists, thoracic surgeons, endocrinologists, etc.
This did not surprise me. I didn’t think that a single doctor would be able to handle every part of my family member’s illness. What did surprise me is that the ICU attending feels comfortable ignoring pretty much anyone they disagree with. This is especially true for specialties like psychiatry and neurology, as I think ICU doctors assume brain doctors generally don’t know what they’re doing. Pretty much every recommendation that either psychiatrists or neurologists have made over the course of my family member’s stay has been ignored or modified by the attending. Then the attending passes the orders down to the nurses, who then make decisions based on that, because…
3. Sometimes nurses are the footsoldiers of the ICU regent, and sometimes they’re governors. By this I mean that there’s some stuff the nurses have to follow exact orders on, and some stuff they can do almost whatever they want.
So, when it comes to prescribing or dosing blood pressure medicine? Exact orders. Giving psychiatric medicine “as needed”? Go wild. Letting patients swallow apple sauce? Exact orders. Letting patients swallow ice chips? Some nurses go wild; some nurses wait for exact orders.
And speaking of things that nurses have a lot of leeway with…
4. Everyone agrees that sleep is important, but nobody has any idea beyond that.
As far as I can tell, the ICU has progressed a lot with regards to sleep. Previously, the ICU refused to admit sleep was important at all, so they constantly woke patients up with tests, rounds, and even just cleaning. Now, with the advent of modern medicine, the ICU has finally admitted sleep is important for recovery, and you can convince them to make some allowances for sleep, like scheduling finger prick tests for the daytime instead of midnight.
However, literally nobody has any ideas oh how to fix the sleep problems that are so common in the ICU beyond “patients should sleep at night”. So, should we let a patient nap during the day? Nobody knows! Is it bad if their sedatives make them sleep more than they would normally? Nobody knows!
So, what ends up happening is that the doctors leave it up to the nurses. Then, the nurses all have their own ideas. One nurse says no naps during the day. The next nurse says naps as needed. Then the next nurse actively encourages naps. It gets very confusing. This is especially problematic because sleep quality affects mental status, which ends up being a big issue in the ICU.
5. Almost every patient has delusions and nightmares, but nobody knows why or how to fix it. Delusions in the ICU are insanely common. It’s something like 90% of patients. Patients in the ICU often describe delusions as the worst part of their recovery. And yet, nobody knows why or how to fix it. The closest we get to why is some combination of physical trauma, anesthesia, and disrupted sleep, and the closest we get to fixing it is a normal sleep-wake cycle.
I’ve been going through this with my own family member. My family member went from a mentally healthy (although somewhat anxious) guy to someone who has literally constant hallucinations and delusions. Occasionally he recognizes the hallucinations as not real; occasionally he does not.
I can say that, as his family member, it’s been particularly sad for me to watch him go through this. My family member has somewhat frequently believed that the ICU staff is kidnapping him or holding him hostage, and often worries that we, his family, are hostages too. Because of this, he often tries to remove his IVs and catheter, which is stressful for everyone. These hallucinations also make it difficult for him to do physical tasks, as he sees things that aren’t there and tries to avoid them.
One suggestion people do have to combat the hallucinations and delusions is to have some sense of constancy. This is difficult because…
6. The ICU staff is literally constantly changing. The ICU has a difficult staffing job. It’s a 24 hour center filled with skilled and highly skilled staff. So, ICU staff tend to work 3 days a week for 12 hours each day, and rotate whether they take the day or night shift.
I understand why the ICU is set up this way. It limits handovers and prevents one staff member from being always stuck with the night shift. However, it has some serious problems.
First, from a patient perspective, the nurses and doctors are constantly changing. This is confusing for a deluded patient, and it’s difficult for their loved ones. For example, we kept having to tell nurses not to put the news on the TV, as my family member, a fervent Republican, gets worked up by MSNBC or CNN. However, each new nurse would put MSNBC or CNN on, usually confused by my family member’s request for CNBC, the business channel. Finally, we had to just write “TV: golf” on the whiteboard in his room.
Second, there’s no institutional memory beyond the medical chart. While the medical chart says what was prescribed, it never says anything beyond that. So, for example, my family member’s poor reaction to Haldol was not included on the chart. We had to inform each new nurse not to give him Haldol, and then still had a new nurse give him Haldol when he was agitated.
This problem becomes especially acute with any longterm issues because…
7. The ICU is great at managing acute issues, and struggles a lot more with longterm issues.
Anything that happens quickly the ICU is great at managing. Sudden drops in blood pressure or blood oxygen, very agitated patients, or even just bathroom emergencies are all things that the ICU staff swoops in and handles, well, handily. However, anything that takes longer to get a handle on the ICU struggles a lot more with.
So, digestive issues, hormonal issues, and mental issues all get short shrift. Basically, if there’s an obvious symptom, a consult will come in to try to treat the symptom. Then they’ll take another test in a day or so, see what happens, and go from there. There’s no sense of a scientific method, reasoning from first principles, or even reasoning from similar cases though. It’s all shooting in the dark, and most of the time I felt like I could have done just as good a job on these longterm issues as the ICU.
There are a few factors that contribute to this. The first is the aforementioned lack of institutional memory. The only people seeing the patient are the ICU doctor, who changes out every few days, the consultant, who sees the patient once every few days, and the family, who’s there consistently but doesn’t know what to look for. The only real way to track the patient’s progress over time is then the chart, which contains the patient’s test results.
But, there are a couple problems with these tests. First, they aren’t that informative for most situations. There’s no real test that can tell why someone has been constipated for a week or has hallucinations.
Second, even when the tests are informative, they are a single snapshot in time. So, it’s helpful to know if someone’s thyroid levels (TSH) are low. But, all that tells you is that their TSH levels were low at the instant of the test. It doesn’t tell you how their TSH levels change over the course of the day or in response to thyroid hormone supplementation.
The last factor is a lack of adequate tools. Most of the long term issues that come up don’t have great treatments for them. Hallucinations only really have antipsychotics. Digestive issues only have the same laxatives and antidiarrheal medicines that we all are familiar with. Adrenal insufficiency only has hydrocortisone. All of these medicines have a huge amount of side effects and don’t treat the underlying issue particularly well.
Compare the difficulty doctors have with managing longterm issues to, say, how they manage blood pressure. Changes in blood pressure are difficult to deal with, but doctors have a lot of drugs and surgical interventions they can use to deal with changes in blood pressure. They also have constant monitoring of blood pressure, and blood pressure responds quickly to any intervention, so they can see if their intervention is working.
All of this together means that…
8. The ICU is a good place to not die, but a bad place to recover. Right as I was finishing up this essay/list/listicle, my family member was declared healthy enough to get moved from the ICU to a stepdown unit.
A stepdown unit has much less intensive monitoring than an ICU unit. One nurse covers several patients. As my family and I found out, it also has much less skilled nurses. Our nurse is a trainee, who seems entirely overwhelmed by covering my family member. She’s been continually absent from his room, and leaves a lot of care to his untrained “patient care assistant”. His assistant, in turn, is also overwhelmed, and so I and my family personally end up providing my family member with a lot of help.
And yet, my family member, so far, seems to be recovering faster in the stepdown unit. His confusion seems to be clearing and his physical abilities are coming back faster. The lack of intensive monitoring means that he’s not being continually disturbed when he’s sleeping, and there’s less stuff hooked up to him that he can mess with and get himself in trouble.
I do appreciate everything that the ICU did to prevent my family member from dying. He went from a comatose patient on a ventilator to a guy who can walk with assistance, eat real food, and hold simple conversations. My hope is that in another month he’ll be able to be home, even if he needs an assistant for day-to-day things.
But, it does seem ironic that, at some point in his care, the best thing for him seems to be an overwhelmed nurse who mostly leaves him alone with his family. It really makes me think about how the hospital might be organized differently. If the hospital focused less on pure survival, might their patients recover faster?
I haven’t worked in an ICU for over 20 years but everything you describe bothered me back then and I am not surprised that it’s barely changed. Wish I had something constructive to say but the whole system is a mess.
And then, there’s the “Hospitalist,” a vague title for an even more vague job with undefinable duties. And this individual can never be found. Anywhere.
I feel for you after dealing with this over the past few years both parents and a spouse.