Urologist ordered a test I didn't approve – how upset should I be?
May 29, 2021 8:14 AM   Subscribe

Earlier this year I had a prostate biopsy, and of course that means sending samples to a pathology lab. Without telling me that he was doing so, or asking me, my urologist also sent off a sample for genetic testing. The test is expensive and apparently not helpful in treatment decisions. Do I complain? ask for reimbursement of my coinsurance?

The genetic test that my urologist ordered is reputable, one of a number of genomic tests that are intended to estimate how aggressive or fast-growing a particular prostate cancer tumor is. My score came back relatively low, which by the testing lab's estimate bumped me down from an unfavorable category to borderline low risk. My urologist was all smiles: "There you are, you're right on the border!"

In the meantime, I've had second-opinion consultations with the head of the urology dept at my local (major) university health sciences system, and a radiation oncologist also with the university who is clearly up on current research. Both of them say they give very little weight to this particular test in recommending treatment options, because while its scores are backed up by evidence, there are limitations to the applicability of the test that make it unreliable as a decision factor in individual cases; other standard diagnostics like the PSA levels, biopsy readings and a prostate MRI are much more useful to them.

So my insurance company coughed up over $2K and I'll be paying $300 coinsurance for a test that turned out not to be helpful. I won't be seeing my old urologist again--that's my minimum reaction. But in terms of medical ethics and responsibilities, how common/uncommon is it for a specialist to order a test like this without consultation? Would I have any ground to do more than just complain?
posted by Creosote to Health & Fitness (21 answers total) 2 users marked this as a favorite
Best answer: I think the real issue is that you weren't asked or even told about the test. The fact that some other doctors think the test isn't helpful isn't really relevant, as there will always be differences of opinion.

Trying to get reimbursed for the expense seems like a losing proposition. The test has already been completed, the insurance company already paid, and it's your word against the doctor's that you weren't on board with it being done.

If it were me, I'd just move on. If you want to do something extra, you could review the doctor on Healthgrades et al, or I suppose contact the Board of Physicians in your state. My sense is it won't do any good. It's hard enough to hold medical professionals accountable for even egregious mistakes.

I sort of know how you feel. I had a doctor order an HIV test for me once without asking, which is actually illegal in my state (they need you to sign a form). It really messed with my head, because there was no reason to have it done, I hadn't been sexually active since being tested the last time, and it felt like some sort of passive aggressive commentary on my lifestyle. That doctor also pressured me to get other tests, but thankfully didn't order them without my consent. And didn't help me with what I'd actually come in for. I just stopped seeing that doc, and she ended up later becoming a dentist.
posted by Flock of Cynthiabirds at 8:54 AM on May 29, 2021 [5 favorites]

Please push back. This is not cool, and the medical profession needs to get that message loud and clear.
posted by amtho at 9:32 AM on May 29, 2021 [7 favorites]

I think you can ask for your money back, sure! I bet if you complain to the practice he's part of, they'd withdraw the claim and then you can figure out how to get the $$ back from the insurance.
posted by RajahKing at 9:49 AM on May 29, 2021 [2 favorites]

I'm trying to understand exactly what it is that's bothering you about this. I wouldn't necessarily expect the doctor to detail every test he ordered in connection with a procedure, unless I had specifically requested it, it was absurdly expensive in the medical context (which sadly $2000 largely covered by insurance is not!), or it would reveal some kind of sensitive information (like the HIV test mentioned above).

If it's just that you think the test wasn't useful--from the way you've described it, it sounds like there is a difference of opinion on the usefulness of the test in guiding individual treatment decisions, not like it's believed to be quackery or wildly outdated. Honestly, when you go from a "regular" doctor to a specialist center, you should probably expect the specialists to have different/more advanced/possibly more experimental views on treatment design.

It sounds like we're talking about potential treatment for cancer here, and, believe me, I understand how emotionally fraught that can be, and how the prospect of cancer robs you of a feeling of control over your body. But without more information, I'd say that what happened is not routine, but still a fairly common occurrence. Not an ethical violation, and not even something I'd feel I had to stop seeing the doctor over.
posted by praemunire at 10:08 AM on May 29, 2021 [21 favorites]

(Thinking about it, I'll add that I might feel somewhat differently, at least about the reliability of the doctor, if the second opinions had recommended a substantially different course of treatment, i.e., "watch and wait" vs. "you must have surgery tomorrow!" But you don't mention that.)
posted by praemunire at 10:12 AM on May 29, 2021

I would email the doctor and say you noticed they performed a test you had not agreed to and which was not 100% covered by insurance and would they please in the future notify you when adding a test, or anything else like that? If you are in the US, a surprise bill can be very high and in your shoes I would wonder if the doctor is even aware of what they did. If they were to do this again, and let's say the cost to you was much higher, you would have a record of having pointed this out.
posted by BibiRose at 10:28 AM on May 29, 2021 [5 favorites]

Best answer: I assume you are in the US.

For what it's worth, I can almost certainly state that the urologist had no idea what the test cost when they ordered it. Pricing of medical tests is kept deliberately opaque from everyone -- doctors and patients alike -- partly because costs vary tremendously in our fragmented health system, but mainly because if anyone knew how much some tests cost, they'd never be ordered, and the present capitalist model of healthcare in the US relies on fee-for-service billing.

Price display reduces orders by anywhere from 10%-70%, which is great for patients but not for the health systems that rely on revenue to stay afloat. So most health systems actively block that information from being displayed prior to order. (My own system's EHR occasionally but inconsistently tells me how much a copay would be AFTER I order the test or medication, but not before. It's very perverse.)

tl;dr the "system" is fundamentally broken and while I too would be upset in your shoes, you are not going to be able to fix it by complaining to anyone.
posted by basalganglia at 10:31 AM on May 29, 2021 [10 favorites]

I don't know, I feel like in a country where a doctor can expect that a patient will have to share in the payment for each procedure, the doctor has a responsibility to let the patient know the procedures and (at least estimated) costs involved, especially if they're optional or controversial. I don't think it would really be legitimate for them to say "eh, [some amount] is no big deal" -- they have no way of knowing what counts as absurdly expensive or affordable to a given patient. Whether or not it's required by law or ethical standards, a good doctor treats their patients as real people, not as abstract cases, and knows that finances are an integral part of their lives.

If a doctor can't estimate the costs, then they should at least give patients the ability to opt in or out of non-essential procedures.

I'm a little surprised they didn't feel the need to at least explain the privacy implications for this specific genetic test, or explain why there aren't any, and make sure you agree.

I'd probably mention their behavior on review sites if nothing else, because I'd want to know to watch out for this with any doctor of mine.
posted by trig at 10:35 AM on May 29, 2021 [3 favorites]

If it weren’t a situation where they were actively investigating a tumor or other issue, it would seem more clearly not OK.

I would not want to be told randomly, for example, whether I have the known genetic mutation(s) for breast cancer without consenting to the test first, and it would seem clearly unethical for someone to make that happen. I would be upset to be thrust into a world of worry and deciding whether to have a prophylactic mastectomy without having any control over the timing and whether I had appropriate emotional support lined up.

Doing genetic testing on a sample of a biopsied breast tumor without my explicit consent would feel really different to me. There’s already an active situation to be treated, already worry. I wonder if, aside from the cost, those two sorts of situations are mixing together in your mind and you’re feeling the rage I would feel in the former but not the latter situation.
posted by needs more cowbell at 10:36 AM on May 29, 2021 [3 favorites]

OK, I kind of rescind my previous answer. Doctors are doing their professional best with the information they have; they are not perfect robots, and the fact that they sometimes disagree is a feature, not a bug. It doesn't sound like his judgment was egregiously off-kilter.

However, I still wish for pushback agains the opaque pricing system. I'm just not sure whom to push.
posted by amtho at 10:45 AM on May 29, 2021

Best answer: I have had a lot of health issues in the past few years, and various doctors have ordered hundreds of tests of various kinds. I rarely have gotten more than, "I want to run some tests to determine..." The only exception is my Nephrologist who explains each test thoroughly, really with more detail than I want or need. I think the most likely explanation is that this Urologist runs this genetic test on every prostate biopsy, and just considers it part of that procedure. So, when he said something like we'll do the biopsy and see what we find, he was informing you of the genetic testing, though less thoroughly than you would prefer. I think that feedback would be more useful and more welcomingly received that a demand for your money back. Something like, "Dr. U, I think you need to do a better job of informing patients that this genetic test will be done on the biopsy sample."
posted by hworth at 10:58 AM on May 29, 2021 [4 favorites]

Response by poster: Thanks, all. The range of opinions tells me that this is not a clearcut case. Given that, I think I'll simply let the urologist know that I am going to be getting treatment at X university's facilities and will be working with their urologists in the future, and oh by the way both the chief urologist and the radiation oncologist told me they don't base diagnostic decisions on Test Y.

Apologies for not making it clear that I was talking about a US-based situation--I know perfectly well that Metafilter has readers from all over but was too focused on my own case. (For what it's worth, I've got localized cancer that should be quite amenable to treatment as they are these days, and the saga of working through the diagnosis and options has made it crystal clear why second opinions are so important with prostate cancer and I'm sure most other varieties.)
posted by Creosote at 12:49 PM on May 29, 2021 [2 favorites]

It’s quite important to get genetic testing of cancer tissue before treatment and this is fairly routine in cases of a prostate biopsy. Once you undergo treatment with radiation, the tissue is too damaged to get this analysis done, and unless you have metastasis, the opportunity is lost to get this information. Genetic analysis is needed for many of the downstream treatments that you hopefully will never need, but you want to have the option to consider if needed. I think your quarrel isn’t with the doctor, but with a ridiculous and often criminal insurance system which doesn’t pay for tests that are part of accepted standard of care. Good luck with your treatment!
posted by quince at 1:04 PM on May 29, 2021 [4 favorites]

If your doctor believed that this test would provide information how fast-growing the cancer is (and it sounds like he did, and it sounds further like that was not an unreasonable thing for him to believe), then it was absolutely appropriate for him to order the test. The rate of growth of the cancer is a big factor in treatment choice. When I had prostate cancer, the rate of change of my PSA score was a big factor in the fairly aggressive treatment I and my doctor chose.

Having said that, if further consultation has caused you to believe that this particular test doesn't provide useful information, then sure, talk with your doctor about that.
posted by billm at 2:19 PM on May 29, 2021

the doctor has a responsibility to let the patient know the procedures and (at least estimated) costs involved, especially if they're optional or controversial

The doctor can't. All the doctor can tell you--if he can tell you that--is the sticker price of the procedure. He can't estimate your insurance coverage for you (which includes the negotiated price for that company's patients, and then individual coverage).

It's a dumb system.
posted by praemunire at 4:00 PM on May 29, 2021 [3 favorites]

Then they can tell you the procedures they want to order, explain the reasons, and let you opt out -- especially of the ones that aren't essential.

It's a screwed up system, exactly. It's a system where people can wind up in life-destroying medical debt. So yeah, I think doctors should do at least what little they can, instead of signing people up for procedures they may or may not be able to pay for, that they may well not even need, without ever explaining the options and giving them the chance to opt out. And yeah, I think no one should wind up looking at their bill and thinking "what the hell, I had no idea they were going to do this."

In every thread about doctors and medical care there are always a lot of comments saying "that's just how it is, it's just a terrible system" and that's true, but that makes it all the more important for anyone with any power in the equation to identify what they can do to protect patients -- even if it's only a little -- and do it. I'm really not sure why it's worth defending anything here.
posted by trig at 5:39 PM on May 29, 2021

I'm really not sure why it's worth defending anything here.

The (reasonable) question was whether this doctor's behavior was outrageous and beyond norms, such that perhaps he should be reported to his superiors or the authorities! I don't think detailing every single test or other billable event run in connection with a procedure of any complexity, unless requested to, is the norm anywhere in the world (nor is what I guess the desired experience is, inviting the patient to choose an a la carte procedure?). The notion seems to reflect a real lack of understanding of what's entailed in more complex procedures, for which there can be dozens of billing codes involved.

But let's be specific here. OP didn't get upset when he first got the bill, on which I would not be surprised to learn that there are a number of other billable events that weren't specifically discussed with him in advance. Rather, he became upset when he found out afterwards, from a specialist, that that specialist doesn't regard the information from the test as too useful. And, sure, no one wants to spend $300 for something that's not too useful; nor does anyone want to feel like they have solid information about their health that he's then told is less reliable; I get why he's not happy. But the doctor who ordered the test obviously thought it was quite important and it's very unlikely that OP would have refused it in the light it would have been presented to him by this doctor. This isn't even actually a systems failure. What he's really objecting to is the difference in medical judgments.
posted by praemunire at 6:43 PM on May 29, 2021 [6 favorites]

Best answer: While ordering useless tests is certainly a systemic problem, that's not actually what happened here. The original urologist clearly felt the genetic test was important for risk stratification. The second opinion academic center did not. That's frustrating, to be sure, but medicine is an imperfect science where nothing is certain except death, and even then we find ways to argue with each other about it.

It's a bit much to expect patients to become savvy at what is and is not "essential," when three doctors with a minimum quarter-century of graduate/postgrad training between them cannot agree. Particularly on this specific issue which is being actively debated in the field, the utility is far from settled. I bet if you got a third opinion from a different academic medical center, you'd find someone who bases treatment decisions on the result of genomic testing just like your first urologist.

(As an aside, cancer genomics isn't genetic testing in the traditional 23 and Me sense. It's looking for cancer-specific biomarkers. More like testing a breast biopsy for estrogen receptor positivity than for the BRCA gene. Creosote, if I misunderstood and they actually tested your native genome without your consent, that is an ethical lapse and should be called out, separate from any concerns about cost or test utility.)

Regardless, the whole thing is an added stress, and I'm sorry you're having to deal with this. Best of luck with whatever treatment course you decide to pursue.
posted by basalganglia at 7:57 PM on May 29, 2021 [2 favorites]

Many states, including Virginia, have adopted laws about ‘surprise medical bills’ , which is exactly what this is. I suggest pursuing that for a possible method to address your concerns.
posted by zenon at 10:25 PM on May 29, 2021

'surprise medical bills’ , which is exactly what this is.

Surprise billing, aka balance billing, is about getting billed directly by providers for services at an out of network location at higher rates than the negotiated in-network copay or coinsurance. This is not that.
posted by basalganglia at 3:01 AM on May 30, 2021 [1 favorite]

Echoing what others have said above mostly, billing and cost is really done on the insurance side not on the physician side. The physicians might be aware or the billing department itself has some idea what they are getting reimbursed at from insurance companies for a specific billable code and the highly inflated self pay rate that they charge someone has no insurance at all (though this is fairly unlikely as well unless they are in a private practice), and if they run your insurance, the billing office might be able to give a percentage you might have to pay, but ultimately the numbers are coming from your insurance NOT from your provider. And everybody's insurer is different and it's a complete mindfield. You can get twenty different people in for a procedure and ultimately what the outcome looks like for them out of pocket can all be extraodinarily different from eachother to the tune of thousands of dollars. Also specific parts of your plan (out of pocket maximum for the year, deductibles, in network or out of network, excluded coverage, preauth requirements) can impact that too!

So doctors just do what they think is necessary and the financial pieces fall where they fall. I had a procedure at a hospital (in network! Preapproved!) Where a specific part of the procedure was concidered not medically necessary to the tune of thousands of dollars, and a part that likely made a huge difference on my quality of life. There is no way my doctor could have known that my specific insurance company had put a specific limitation on a specific code during an authorized service.

Especially while he was busy doing surgery.

I think that the fact your insurance covers it at all is a sign that the test is concidered a valid test to run in your situation because otherwise they wouldn't have covered it at all. It is highly, highly common that if you talk to five specialist you will get five different answers, especially when deciding treatment options for a complicated condition, and how they arrive at that answer will be slightly different from eachother. It's not bad, or even wrong, but it more has to do with the human body is incredibly complex and there are a myriad of ways to look at and try to address any singular issue.
posted by AlexiaSky at 3:24 AM on May 30, 2021

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