Withholding medical information from patients

I was reading a biography of Oscar Hammerstein. While still a relatively young man (60-ish, I think) he developed terminal stomach cancer. His docs figured he had about six months to live. They conferred with his family and decided not to tell him. He eventually figured out he was dying just a couple weeks before the end.

– Does this sort of thing still happen? Do docs still withhold bad news from patients “for their own good”? I’m talking about adult patients with clear minds, like Hammerstein, not people with diminished mental capacity. It seems totally at odds with the idea that people have a right to make decisions about their own lives.

– If it doesn’t still happen, when and why did things change?

i know doctors who have decided not to tell patients with one terminal condition (eg chronic heart failure) that they have another one (eg cancer), on the basis that they simply don’t need to know.

so yes, it does still happen.
and yes, it is often at the request of the family.

and no, i don’t really approve.

i thought of some situations where the it’s a bit more vague.

for example, many physicians feel that their patients respond better if the news is broken gradually over a period of days or weeks, rather than suddenly all at once.

so that the patient says “I’m dying, aren’t I?” after lots of subtle cues, rather than the “Mr Jones, we need to discuss your test results” approach.

In general, if the patient says “tell it to me straight doc” or insists on a diagnosis, they won’t be lied to.

but there are exceptions, for example if the patient is very distressed, when the physician might feel that it was better to deflect the questions and break the news at another time.

Sometimes this is taken to extremes, i.e. with non-terminal conditions. I once had a CT scan of my ankle (long story involving several fractures and a bunch of hardware and bone spurs), and the hospital refused to release the radiology report to me directly. Their justification was, “Well, we know it’s just your ankle, but we do work all the time involving cancerous tumors and such, and so we want people’s own doctors to release the information to them in whatever manner they feel most appropriate.” WTF? It’s my body, and I have the right to know what’s going on!

It’s an exception these days for a doctor to not tell a patient a diagnosis.
If the diagnosis is known, then the doctor will usually confer with the family first (especially if the patient is elderly, which is ageism, I know, but still a societal norm in these times), and then with the patient.

Now if the diagnosis is not known, that’s where it gets interesting.
Lots of tests can be done to rule out different things and narrow it down, but what the doctor tells the patient after that point is variable to many things: the disposition of the doctor, the situation of the patient and/or family, the ethical training of the doc, etc.
But even so, in such circumstances generally several specialists have been consulted on the case and their two bits added.

Depending on the situation, perhaps they’d had experience with patients getting reports before hearing from the doctor what the explanation of the report was, and freaking out over various statements on it that don’t really mean much of anything significant. At my last job, I was told not to release test results until one of our doctors had discussed them first. We had a patient’s mother freak out over seeing phrases on an echocardiogram that didn’t mean anything significant (stuff like “trivial mitral insufficiency” or the like), even though the major result on the echocardiogram was “Within normal limits”. Some people will throw a fit if they see anything other than the word “Normal” on a test result, when it’s the job of the doctor who interprets the test to list anything of even minor note.

Yeah, but don’t I have an absolute legal right to my own medical records?

You do, Eva, but in the office where I last worked, we would at least have the physician contact you to explain the results first. Fortunately, this usually wasn’t an issue - the vast majority of the time, people would simply call in to find out the result, and we would tell them that the doctor had to explain it. We’d contact the doctor, and he or she would call.

If you just ask for the records, they shouldn’t hand them over. What they should be doing to cover their own rear ends is to get you to sign a consent for release of information, and only then copy the records and hand them over. Usually we’d mail the records to their home, though occasionally people would drop the consent off and receive the records on the spot if time allowed. If you get a hassle like that again, figure out where they deal with medical records, sign a consent for release of information, and specify exactly what you want to receive.

In the past, Japanese culture dictated that terminal illnesses (and cancer, even if it was treatable) were not to be revealed to patients. I think that’s changed now, but in the past, this was the case.

The problem in my case was that the hospital overlooked my CT results, and somehow they ended up at the bottom of the pile. So after a month of waiting for my doc to contact me (I was told upfront that it would be a week at most), I finally took the bull by the horns and discovered that somehow the hospital had never had a radiologist look at the CT and create a report, so my doc never received it, so he never called me to explain it. I had made a written request/release for the records, but the important part of the records hadn’t been created yet, much less transmitted to my doctor. My doc’s office was sympathetic, but wasn’t about to devote much staff time to hunting down my results.

That’s why after waiting in suspense for a month, I decided to chase after the suckers myself.

Does this apply to psychiatric records too? That is, does the patient have the right to know that he has “Schizoid Personality Disorder with Avoidant Features”?

Current medical-legal thinking in the US is that any adult competent patient has a right to know all the facts about their health, and the physician has the duty to tell them. I adhere to this strictly, and have gotten chewed out by family members that didn’t want me to tell their mom (who was my patient and fully competent) that she had cancer. I refused, they got upset.

Having said that, know that the medical record at your doctor’s office does not belong to you. It’s the doctor’s record about you. You have the right to the information in the record, but only thru authorized channels, and the doc can insist on sitting down with you and explaining what the things in it mean. No smart doc will put up too many barriers to your getting the info, but it shouldn’t be just handed over. It’s a legal document and must be treated as such.

I can respect the fact many patients would not want to know about their diagnosis. The trick is not to order the test to begin with if the patient is unwilling to act on a positive result.

I believe Eve can testify that Kay Kendall was not told of her fatal illness-was it cancer?

One of the labs at my company does a cysic fibrosis test that tests for a couple dozen mutations at once. There’s one mutation that is relevant only if it’s combined with another one. So when they do the test, the results for that mutation are physically covered, and the tech only looks at it if the other mutation is present.

We’re required to report any data we generate, even if it was done mistakenly. Of course, then it’s up to the doctor to decide what to do with it.