The first time I saw my father in hospital after his heart attack, he was still in the ICU, and he was sleeping; one thing about being in ICU is that it’s extremely boring, and you feel absolutely dreadful, so sleeping a lot is a reasonable retreat from the world. I was disappointed when the nurse roused him in a bright, chipper voice, pulling him into wakefulness and a world of a pain and disorientation. I could have come back later. She didn’t hand him his glasses and he blinked at me owlishly from his bed, barely recognising me until I spoke.
It was a brief visit; visits to exhausted people in the hospital often are. This version of my father was like a paper doll propped up against the sheets, a stand-in for the man I knew, and as he gradually rallied in the hospital, I watched the paper doll slowly get replaced by a real person. A real person who railed against being in the hospital at all, who hassled the nurses and advocated for himself. And a real person who started refusing treatments.
Treatment refusal is a controversial issue in medicine, often; some people really seem to struggle with the idea that informed patients have the right and the agency to decide which treatments they do and do not want. In my father’s case, though, the refusal of treatment had nothing to do with his decisions about the course of his medical treatment. For him, it was a purely cost-related decision. No one would tell him how much the hospital billed for anything because there was such a divide between the billing department and the first-line care providers, and he was terrified of the subsequent medical bills that would come pouring in for months after he arrived home.
Even though my father was on Medicare, he was well aware that the programme didn’t cover everything, and he didn’t see any need to saddle himself with any bills he didn’t need. So he cut out every possible treatment he could think of, politely but firmly refusing things and lobbying to be sent home because he knew that every day spent in the hospital only added to the size of his bill.
My father isn’t the only patient in the US making decisions about medical care based solely on how expensive those decisions will turn out to be. Many people wait for treatment until the last possible minute because they fear the expense, which, tragically and frustratingly, can make treatment even more expensive than it would have been originally. And once people are getting medical care, the first question off their lips is often how expensive it will be; I know this from first-hand experience because it’s often the first thing I ask, and I’m not ashamed to admit that I scrounge for pharmaceutical samples and other assistance with the best of them, because the alternative is not getting any care at all.
Because we live in a system where people have to hold fundraisers for basic medical treatment, and where people have to refuse advisable and possibly necessary care because they know they can’t afford it. Where a 65 year old man in hospital after a serious medical event refuses a glass of juice because he’s afraid the hospital will charge him $4 for it, and that will be $4 more on a medical bill that will run into the tens and possibly hundreds of thousands. Patients focusing on costs, of course, are going to be experiencing high levels of stress at a time when they should be focused on recovery, but telling them not to think about the expense, to ‘focus on getting well,’ is ludicrous, because what happens after they get well? If they damn the costs and go for the ‘best’ care available, they may well lose everything.
When people talk about the broken nature of the medical system in the United States, there are so many things to talk about, but this to me is one of the most striking and obvious, and it’s an illustration I use for my friends from outside the US when they struggle to grapple with how devastating the system is for the people who deal with it. When I talk with friends in the US about medical issues—something I do a lot, as a disabled person who tends to be friends with other disabled people—I know I’m not the only one who mentally tabulates the cost of the treatments we’re discussing, and when people who’ve had otherwise healthy lives fall into the medical system and turn to me for advice, I tell them that they’re about to enter a brave new world, a world where they need to revise their estimates by magnitudes of ten or more.
You think a medevac to a trauma centre that can handle your case would cost a couple grand? Try moving that decimal point and you’ll have a better estimate. You think hospitalization will run a few hundred a day? HAH. Think surgery can’t be more than a few thousand? Sure, for the anesthesiologist’s services alone. Think your medications won’t be that expensive, because, really, how much can a few pills be? Oh, honey.
I have a referral for a surgeon sitting in my desk drawer. I’m supposed to meet with him to talk about what’s going on with my wrists and to decide on the best course of treatment for them. Every few days I pick up that referral and stare at it again. He comes highly recommended and he’s got quite an impressive C.V. I’ve been warned that his schedule is highly booked and I may need to wait weeks or months for an appointment, but I still can’t pick up the phone. Because every time I think about it, all that comes to mind is how much it’s all going to cost; not just the surgery itself if that’s what needs to happen, but the workups for surgery, and the postsurgical care. The physical and occupational therapy, and the likely inability to work for weeks or possibly months after the procedure.
And so I tuck the referral back into my desk drawer with a stack of other things I need to deal with ‘someday.’