Kaiser Permanente has been really good lately about delivering all my test results quickly and efficiently. Little did I know that they have no choice:
Congress was full of good intentions when it directed the Department of Health and Human Services to make sure patients get their test results as soon as they’re available.
But the implementation of that directive has set off a battle between doctors on one side and HHS and patient advocates on the other....Doctors say that patients are now receiving news about potentially terminal disease, or other, less catastrophic but confusing, test results from patient portals before they have a chance to explain them. The American Medical Association is pressing the department to revise its rules, and the trade group for physicians is finding allies in state legislatures. But patient advocates, and HHS, say patients should, and can, decide when they want their results.
The doctors say they know how their patients feel. Patients “are extremely angry and have had harms they’re reporting from getting instant access,” AMA President Jack Resneck said. “We’re seeing a parent who finds out at nine o’clock on a Friday night when they can’t reach anybody that their child’s leukemia has recurred.”
I think the obvious answer to this dilemma is that different patients want different things. Speaking for myself, I want results as soon as they're available because I'm not the kind of person likely to panic if they're bad. And I don't feel like waiting around for them until my doctor happens to have the time to call me—or, worse, ask me to come in for a face-to-face, which will take God only knows how long to schedule.
Beyond that, if you're the kind of person who will panic if you get bad news on a Friday night, then don't check out your test results on a Friday night. Let's use a little common sense here, people.
Personally, I'm tired of all this anyway. Here's what I want: I want doctors to tell the truth. Period. I want the same truth they might provide if they were chatting about my case with a colleague in the hallway. Aside from that, I don't really care much how they present it.
Unfortunately, I've never yet found such a doctor. They all tell the truth most of the time, but when the chips are down you can't trust them. And if you press them, they get defensive and angry.
Am I exaggerating? It's possible. Maybe I'm the one who needs to act better so that doctors in turn will like me more and treat me better.
I dunno. But the truth, and nothing but the truth, is what I want.
As if this is how humans actually function. If humans had that level of self control, we'd need far fewer doctors or medical tests in the first place!
I did avoid looking at my emailed test results for a day, which meant I found out that something wasn't right the moment the clinic phone number came up on my caller ID. I'd much rather have the info delivered that way (when I could immediately schudule a followup) than get my test results and then have to play phone tag. My followup was on a Friday, and I thankfully got my (good) results in person, and didn't have to wait all weekend. Waiting for bad news sucks, but waiting to figure out what to do after the bad news is even worse.
Cancer diagnoses do prompt some people to commit suicide impulsively, so there's more at play than simple personal preferences.
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Drum seems to me to be somewhat autistic - in at least the popular sense - certainly he is rather unusual in self-described behaviour
It is probably wise for systems not to be designed for the ideal Spocklike person of low emotionality and rather for what would seem to be the self-evident majority who are rather more emotional.
And above all allow for discretion rather than rigid "transparency" based on idealisation of human condition
Results should come as soon as they're available. Period!
When my mother was in her final weeks it was really difficult to get honest information, information which I needed to ease her last days. And getting the test results to follow her around, FFS!!!
I agree, we need to know, and doctor's need to come off their god-cloud down to the rest of us.
Shirley Congress/HHS was only trying to help.
Frankly, Congress should be figuring out how to regulate other administrative tasks in medicine, too.
I have been dealing with a medical horror story for the last two months because my new doctor, who appears to be reasonably competent at medicine, is massively incompetent at administering his practice. He either has hired the biggest idiots in the world to be his medical assistants, or he has taken on too many patients for the practice to be able to handle.
All I wanted from the guy is some referrals to specialists. He agrees that I need the referrals. And yet his assistants are apparently unable to correctly send a fax to other providers and insurance companies to make sure I get them; they have screwed up at least 3 different faxes now. If these people had the threat of serious fines hanging over their heads for failing to process patient paperwork, maybe patients would have one less bit of garbage to worry about when trying to go to the doctor.
Ah, you've hit upon the worst actor of all in our medical show, the money man.
They still require faxes? Well there's your problem right there.
I was gonna say...
you... you haven't been to a doctor in the US ever, have you? Or at least haven't ever asked your doctor how they handle routine tasks.
They ALL still communicate with each other using fax machines. Tons of articles have been written about this over the years: it's still pretty much the only form of electronic communication that's considered secure enough to handle sensitive patient data.
This was still the case when I last worked for a nursing home; I had to repeatedly contact a lab & pharmacy to get them to stop delaying treatment because they insisted that my employer had given them the main number to transmit faxes & refused to switch to the ward fax numbers or even the main fax number because of their security orders.
When my wife had medical problems, we saw four specialists in a row who refused to see us before we faxed our records over and then at at the appointment said they didn't review the records because their fax machine is broken.
That is my best guess at the moment - that these clowns are sending faxes from a malfunctioning machine. The part that I don't get is that I've been dealing with this for 8 weeks now. If they really haven't been able to send any faxes correctly for two months, HOWWWW have I been the only patient of theirs who has been screaming bloody murder to them about it??
Every machine should print a confirmation sheet following a successful send. If the setting is to NOT print one - some offices scrimp on paper that way! - the setting should be changed do that the sender will be aware of any failures.
Now that I think about it, there has been *one* occasion over the course of this saga when they appear to have correctly sent a fax: it was a month ago, after five weeks of finger-pointing between the doctor's assistants and my insurance company, when I finally lost patience and filed a grievance against my insurance company, thinking the problem must be on their end. The insurance CSR called their office the very next morning and they finally got the required form that the assistants swore they'd already faxed them twice.
So the only data point I have is:
-I call again and again, no fax ever goes through on five or six occasions
-The insurance company comes knocking, wham, suddenly their fax machine mysteriously works
FYI, since Covid, there is a shortage of "real" trained hospital, clinic, or lab personal. I believe they go to the street in the morning and pick the first person who comes along. Many offices are plagued with this issue, including my own. My neighbour got sent to a referral in another city. Ha, but not funny. It's ugly out there folks and not going to get better so we have to suck it up.
Putting them on the pedestal in and ascribing god-like status was a mistake. There is no magic and much guessing. The only good oath was to do no harm. And by this, and what most folks don't understand about medicine, reduced suffering. That's it. Put a body in the best circumstance to heal itself. And when that fails, ease suffering and pain. No one lives forever and dumb luck, like getting struck in the chest, can kill you.
This applies to the mind as well. For it can be the most vulnerable of all our organs. Medical school does not enough training in this regard.
Couldn't agree more, but I did see where doctors have been burned by telling the truth with patients and family members accusing them of not working to cure the person. That said my cat got diabetes that then went into remission. It required several visits to the vet. I just want to be treated by my doctors like my cat is treated at the vet.
I certainly have no problems with people having the results as soon as possible. It is their information. Heaven knows that with the flaws in every information system it is possible something happens and info can be delayed so Peter people have it soon.
However, I also know that what will really happen is the people who wont panic AND the people who will panic at 9PM on Friday will both look at the tests. Saying that people who dont want to know shouldn't look is total nonsense and ignores how people really behave. If the test is something really abnormal and it is urgent we will call the pt as we get notified by the lab. If it is not urgent it can wait as I already have all of my staff working long hours and I am not going to add to their hours to discuss stuff in the middle of the night which is not urgent. Of course the reality is also that a very large percentage of pts think any abnormal (and a lot fo normal ones) need urgent attention. Especially if it involves their kid.
Steve
Thanks for painting us all with a broad brush, Kevin. I'm sorry your experience hasn't been good, but you are likely as much a liar as all of the rest of the human race. And perhaps the problem is you. Every doctor defensive and angry when challenged? I call BS on that.
Getting test results without a human to provide interpretation is particularly problematic for some - a relative of my wife's who is racked with anxiety every waking hour of her life pores over every detail of every report. Many, particularly radiology reports and ECG reports, have equivocal findings and physicians necessarily need to hedge because they have learned to "never say never." There are many findings that are normal variants or completely coincidental and unimportant and have no bearing on the patient's symptoms or the physician's concerns. Leaving these for patients' interpretation can create much more pain than a short delay in getting the full story. Unfortunately the manpower needed to provide medical provider commentary for every test result far outstrips what is available anyway.
Talk about painting with a broad brush you are as likely as all of the rest of the human race" does just that.
A doctor informed my father that my mother had MS & that it is incurable; he told Mother that it was "all in her head," & she continued to wear herself out attempting to do everything she had always managed to do. My helping after school & on weekends was not enough.
No physician or family member has the right to know a patient's Dx & withhold it, then to release it to others.
As I remember it, until sometime around the late 1980s or early 90s, the standard thing was not to tell the patient about any potentially dire diagnosis, but to tell only the spouse or someone in the family. My dad had surgery around 1964 for what was really colon cancer but he didn't know that until 20 years later. He'd been told it was a polyp (no chemo in those days, and its use may be a very good reason for giving up the old silence). My mom of course knew because they told her, and had to carry the weight of it around all that time. Thing is, there was a very strong chance they might have missed something and he might never have known before it would have killed him.
So depending when this happened with your mom, it might have been SOP. Not that that excuses it, and I think we're better off that those days are over. But I do think potentially life-changing diagnoses need to be handled with care about how the individual patient might receive it. Some of us want to look right away and get to interpreting it ourselves, others might do better having it explained. But otoh not all doctors are good at that kind of conversation, something the AMA and HHS also should be considering.
I believe Mr. Drum said that he had not found such an always truthful doctor yet. I think you are being defensive when you imply that he painted every doctor a liar when he talked of his experience. I am reminded in some measure of Jack Nicholson's line about you can't handle the truth. That seems to be the import of your desire to interpret the test results to folks. It didn't end well for Nicholson's colonel.
+1
Kevin said "YOU can't trust doctors" when the chips are down. He didn't say HE couldn't trust them. I'm sorry, but that is pretty much a blanket statement. I think his experience is skewed. I should have said everyone is capable of lying at some point in their life (including doctors) - I came off a bit strong (and angry) but most docs are not lying when the chips are down, and to say they can't be trusted is a gross and unfair generalization. As far as interpreting results, it's not a matter of handling the truth. It's a matter of understanding the import of many findings that are truly inconsequential and cause unnecessary worry to people. Radiology reports and ECG reports are intentionally communicated to other physicians in technical language - if there was a simple way for the report to convey the actual significance of these findings (or lack thereof) to laypersons, it might work better. Dr. Google is often unsatisfying in that regard. A potassium level or a hemoglobin, or even Kevin's M-protein levels may be a lot easier to interpret by a number alone. But some tests aren't that simple for a layperson to interpret.
I agree with the others who've said that telling people who are likely to panic that they shouldn't look at their results is unrealistic. You might as well tell them to have a different personality and, by the way, don't get sick in the first place.
I don't know what the answer is, but I don't think letting patients have unfiltered access to their test results is the best one. I had a weird neurological condition last winter and was given every test in the book. Fortunately, most of them came back normal, but did I have any idea what to make of the ones that didn't? Of course not. You're not just the type not to panic, you're also the type to look up anything you don't know. As am I. But still, is my NgbhO12 or whatever being a little high or low significant regarding my current condition? I'm not going to be able to find that out myself. (Condition eventually resolved itself, thank goodness.)
Perhaps I'm too cynical but if the AMA is pressing hard for something then I'm sure money is involved. I have very little confidence that they would be pressing Congress because they are concerned about patients' feelings. I'm guessing that they are more motivated by the fact that doctors can't bill patients for results that get automatically posted on a patient portal, but they can bill if the patient has to schedule a face-to-face appointment.
I'm sure not all doctors are motivated like this but their industry lobbying group certainly is.
Coming from an old nurse, you are very likely correct.
They should pass a law that the only thing any doctor can ever tell my mother-in-law is that everything is OK. It would save hours for the entire extended family.
I am fortunate that I get my test results BEFORE my awesome physician gets them. He trusts me to read them and gets back to me if there are any problems. I chose this doctor because he can be reached, anytime with an in office text. He reads them at 6am, noon, and after 6pm. I am guaranteed with a response after those hours. He is the very best there is!
My former physician was educated in India & always called after her last patient to tell me the results of any tests or X-rays & to explain or discuss any, as needed She also was thorough in examinations, listening to any concerns I had & taking notes. Her follow-up was excellent. She has since joined a hospital-related practice farther away, which is probably less taxing & possibly less demanding. I miss her.
Kaiser, OTOH, severely limits time with physicians, & I once arrived very early, as recommended, due to limited parking, only to wait over 2 hours, without explanation. I was leaving when the doctor walked behind me & saw me for the visit for which my co-pay was made.
Then, following a test, there was no email notifying me to check the website for results. Instead, a form letter arrived in the mail, ostensibly signed by my doctor (copied signature inserted), advising me to contact the hematology/oncology department.
So while my experience hasn't been quite like Kevin Drum's, it has been quite an experience. Not all doctors are part of the problem, but many are enmeshed in a system that emphasizes the impersonal, quick, & the horse, rather than the zebra.
It's why my savings went for ambulances & ER visits which I obviously tried to avoid, but which did result in the CORRECT diagnosis & an immediate blood transfusion.
And while I gave away my two medical dictionaries, my Merck Manual, & PDR on leaving my insurance position, those online test results can still be checked for updated evaluations, so while some doctors are slow to authorize the right labwork or other tests, & results arrive before their evaluation - except in that one alarming instance - checking their significance hasn't been the problem.
A commonsense compromise would be to have each patient indicate at the time of scheduling the lab test:
Do you want results as soon as they're available or do you want them to be reviewed by the doctor first and then contacted directly by the doctor after that review is complete? (Bear in mind, the doctor may not be able to review the test results for X days, especially during a weekend or holiday.)
And let each patient decide for themselves what they want!
How normal is it supposed to be that a doc will personally be on the other end of a call that reaches you at home? In my entire adult life I've only had that happen once (exercise stress test). Any other time a doc has either discussed my own results, or where I've been involved second-hand with somebody else, it's been in a hospital or clinic. The usual thing around here seems to be getting called by a scheduler. Most docs are so tightly scheduled by their systems that I can't see where they'd be able to find the time.
Since the cost of liability insurance became ever more prohibitive for physicians in private practice, and more are employed in more regimented medical offices, that personal touch may also have been reduced by a preference for the ease of emailed information & responses at a time convenient for the providers without repeated attempts, as well as for clarity & proof of documentation.
I don't know. I also have Kaiser, which I love, no fax machines there.
Just had a CAT scan in the morning, got the result in the afternoon, googled the term and Dr.Net was alarming, especially when I googled the terms. Saw the geriatric specialist 2 days later, who was reassurin, I want to believe her--normal aging. We'll know in a few more years.
"They all tell the truth most of the time, but when the chips are down you can't trust them."
What is this even supposed to be referring to? You insert it into your post with no setup or explanation. What have all of these doctors been "lying" to you about? Providing clarification, in layman's terms, for technical test results certainly isn't lying.
"when the chips are down you can't trust them" is exactly the type of thing I heard from anti-vax crazies for the last 3 years. I thought I had accidentally clicked on a Daily Caller link.