I’ve spent a significant fraction of my mental energy in recent weeks dealing with the U.S. medical system, and I’ve taken away from all of it a very solid conclusion: unless you’re
- reasonably knowledgeable about biology and medicine
- assertive in a way that many people (and certainly I) are not always prepared to be
- able to commit lots of time to the task
- free of significant cognitive impairments
- surrounded by a solid social network
- well-fed and so forth—meaning not just able to afford food, but able to prepare it for yourself, etc.
- reasonably affluent
- lucky enough to have a doctor in the family
- able to understand insurance, particularly things like how to choose among Medicare plans, how and whether to buy a Medigap plan, etc.
then I really suspect you’re going to have a hard time navigating the medical system. And to be clear: the logical connective joining all of those bulleted items is AND, not OR. I think you need all of those things.
My mom started losing vision in her left eye late last year. She underwent the usual spate of tests, to no avail. Somewhere in here she was put on prednisone, I believe to fight off an autoimmune disorder that they thought might be causing the vision loss. While scanning her head to look for problems in her optic nerve and such, they found an aneurysm. They decided to repair the aneurysm, and made the first attempt in January, using a pretty remarkable technique whereby they run a coil from her hip all the way up to her brain, stuff the aneurysm with that coil, and thereby prevent it from growing any larger. The first attempt only half-worked, so they stopped midway through and waited a few months to complete the second half. It took her at least eight weeks to feel like herself again, and soon thereafter she underwent round 2; this happened in mid-April.
This one went much worse than the first round. After the first round, she was able to leave the hospital the day after the surgery; after the second she was hospitalized for four or five days. After the second round they found fluid building up in her lungs, and oxygen-saturation levels in her blood that were well below where they should have been. Upon examination, a pretty clear reason for the slow recovery speed came out: they discovered she has emphysema, a result of decades of smoking up to three packs a day. (She quit 30-plus years ago.) Not long after the surgery, she also developed, for the first time in her life, really severe depression. This is apparently not terribly uncommon after surgery: it’s classified in her record as ‘Adjustment disorder with depressed mood’.
Meanwhile the prednisone continued. Eventually one of her doctors pointed out two things: first, that she would never keep a patient on prednisone that long, and second, that a significant fraction of patients on prednisone end up experiencing some form of psychosis. (Google for it; it’s fun.) After something like six months on prednisone, her doctor expected that her adrenal glands would have stopped producing adrenaline altogether. You can imagine the sort of effect this would have on her mood.
Throughout this process, each doctor blindly felt his part of the elephant, but it was exceedingly rare for any one of them to see the whole animal. I thought it was her PCP’s job to coordinate care, and in a certain sense he did: he farmed out tasks to specialists, then washed his hands of it. The surgeon who handled the aneurysm surgery saw that the aneurysm would never again pose a problem, declared his work done (as it probably was, in a sense), and backed away. Her ophthalmologist was the one who originally prescribed prednisone, which sounds like the standard approach to such problems, but I don’t really understand why he kept it going as long as he did; it took a rheumatologist to raise the red flag about health effects of long-term prednisone use.
Nowhere in this process, from what I can tell, did anyone introduce risks to the patient. Are there downsides to performing aneurysm surgery on an elderly patient? Life expectancy for the average 73-year-old non-Hispanic white female is another 14.3 years; is the aneurysm expected to burst in 14.3 years? In 20? As for the prednisone, I don’t think anyone told her about the significant psychosis risk, or the risks of long-term use.
Even if they’d told her the surgical risk, I can imagine how that would have registered. Imagine being told you have a Sword of Damocles hanging over your head, which might not drop during your lifetime. Do you leave the sword alone and hope it never falls? Or do you try to do something to stop it from ever falling, risks be damned? I don’t really know the liability calculus on the doctor’s part, but I imagine it cuts in a similar direction.
Many elderly patients can’t be expected to make complicated risk tradeoffs—especially right when they’re in the middle of a stressful health event. If you’re lucky, you rely for help on the people around you. But many people don’t have a knowledgeable network around them. Many people don’t know doctors. In my mother’s case, her husband suffers from Parkinson’s, and his ability to help is, by everyone’s understanding (including his, and including hers) diminished. So their network is smaller than we’d like. I’m helping where I can, but it’s a struggle.
This latest depressive episode introduces its own complexities. Now my mother is simply unable to make decisions for herself. And it’s not clear, from a distance, that my parents are feeding themselves well, are getting even a minimal amount of exercise, etc. Here’s where we need to bring in community organizations like Meals on Wheels. Those organizations have their own stigmas; but if we can overcome those, there’s at least someone checking in on my parents a couple times a week to make sure that the non-medical portions of their lives are okay. Step out a tiny bit, though: who’s going to request Meals on Wheels? The patient and her husband are not in a place to manage this for themselves. My parents have children who can help them, but not all elderly people do. Even many children who are willing to be involved in their parents’ care may not be able to be involved: work may not allow them the time to handle family care. In my case, I’m lucky to have an employer who will give me the time to place some phone calls on behalf of parents who need help. Not everyone will be so lucky.
I’ve only found one doctor throughout this process who’s seen the big picture, including the weakness of the underlying social supports. This doctor has gone out of her way to send visiting nurses, check in on my mother’s mental health, and even prescribe Ensure to get a few more calories into her diet. Doctors, in my experience, are at worst focused on their specialty to the exclusion of all else; if you’re lucky, they can scale out to all purely medical issues. It’s the rare doctor who can think about nutrition, home care, and even what “informed consent” means for a patient who’s in no position to make decisions for herself.
I’ve started having to fight with insurance in recent days, thereby opening up a new and delightful front in the proceedings. My favorite of my mother’s doctors prescribed Cellcept to combat possible auto-immune attacks on her optic nerve; the drug could literally keep my mom from going completely blind, so it seems rather important to cover it. They’ve been dragging their feet on granting approval. It’s possible the insurer rejects Cellcept for this particular use (namely preventing blindness, I guess), so now we need to file a Letter of Medical Necessity, etc., etc. And on it goes. Imagine trying to navigate this while you’re suffering through post-operative depression, not eating well, deferring to authority figures, in no mood to fight, and with no one around to help or guide you.
My parents are understandably concerned about the medical bills that will result from all of this surgery. So a couple natural consequences of all of this will be some discussions of finances, and some discussions of health-insurance choices. I consider myself a reasonably sophisticated consumer of health information, but even my heuristics here are pretty simple: pick the insurance plan that minimizes the maximum total financial hit I’ll take in a year, when premiums and out-of-pocket max are factored in. For elderly people, this turns into choices among classic Medicare, Medicare Part C, Medigap, and so on. It’s complicated. Many elderly people are vulnerable to scams. Family can help, but eventually the involvement becomes total: is the rest of the family expected to intervene in every financial, technological, and health decision which could lead to the patient’s being scammed? The honest answer may be “yes”, but few people are going to have the time to get that involved in someone else’s life; we have our own financial, technological, and health decisions to worry about.
In the midst of all this, I had my own fun run-in with the health system. Radically abbreviating the whole thing: I picked up a nasty infection six days ago and got a urine culture right away, but it took until last night for the culture to come back. Had it come back sooner, I could have avoided two fruitless courses of antibiotics. I don’t know why it took 5 days to get back cultures which were, as was known at the beginning, urgent. (The pain was unbearable for at least a couple days.) Maybe it just takes that long to culture for the specific types of bacteria at issue?
I consulted a specialist in the middle of the week, who told me that at some point a specialist like him would have to schedule imaging for me. “Aren’t you one of those specialists?” I asked. He said that he wasn’t able to urgently schedule scans for his patients; should the urgency increase, he said I should call the ER, which could take care of the urgency. Consider for a moment how busted the incentives are if specialists are making referrals to the ER.
Sure enough, that night my temperature spiked, and I went to an ER within the same medical group. Our first glimpse at the ER showed that it was overcrowded, serving a largely poor population. Not to be too short about it: it was the kind of hospital that you wouldn’t go to if you had options. Our friends, who are more familiar with D.C. hospitals than we are, all endorsed Sibley, so we called a Lyft and drove the half hour between the two ERs. The contrast could not have been more stark: Sibley was virtually empty and felt boutique. It felt like a hotel, in fact, which made the literal “Marriott Reception Area” all the more…glaring? Hilarious? I don’t know. In any case, I want someone like Sarah Kliff to explain to me why anyone would go to the Washington Hospital Center when Sibley is that close by. Yes, I understand the obvious answers: WHC is the neighborhood hospital in a poorer neighborhood, so it’ll be the hospital for ambulances in the surrounding catchment area, and not everyone can afford a Lyft. Is that most of the story?
This is my second recurrence since 2015 of this sort of infection, and I was told in 2015 that even one was concerning and unexpected. So I’ve been reading up on the chronic appearance of this sort of infection, and when this immediate outbreak is over I’m going to spend a good long while (I already forecast) trying to get doctors to answer my calls and solve a long-term problem even when the short-term crisis has passed. No one cares more about my life than I and my immediate family do, so I need to badger and badger and badger until others grudgingly give me a minute of their time.