A few months later, my (wonderful) allergist, having actually listened when I mentioned increasing and strange symptoms, sent me for more in-depth labs. It turned out that I have a couple of serious and rare autoimmune diseases. There followed a round of visits with specialists, so I requested a copy of the GPs labs again and was shocked to see the extremely elevated liver values that had not been sent to me earlier. From what I can reconstruct, after seeing those values, she had the lab do hepatitis tests and based on those decided no problem.

When the AI specialist saw those labs, she retook them (still well above average though not as high as before) and insisted I see a gastroenterologist. The first time I saw him, he scrawled something on a prescription pad and as he handed it to me said, “Here’s your first script–get a new GP.” Turned out one of the (rare) conditions I have is an autoimmune form of bile duct (and ultimately, liver disease) which I guess my GP hadn’t heard of. Apparently, though looking just fine and dandy, I could have dropped dead had the disease been more advanced than it was.

I have since switched to a new GP who’s been very kind about answering questions by e-mail if they don’t call for a visit; and I take care not to over-do that. As for my (revered) gastroenterologist, I can communicate questions or concerns via his great assistant on e-mail and I’m fine with that; he’s a busy guy, gets a lot of referrals and this way he can spend time with someone who really needs it vs. having it tied up for a simple question. Both doctors (unlike my former GP) give me test orders before any scheduled appointments so they have the results by the time I see them, which saves everybody time. My gastro sends a copy to me ahead of time of the full results, and handwrites comments and interpretations–I was very touched when he took the time to compare recent results with prior ones, line by line, and commented enthusiastically “improved!”

So…as far as sending results and any value-added comments to patients — yes, please. Nowadays the results are laid out in a way that patients can at least see if anything is seriously out of the normal range. If they have a chronic condition, they have probably educated themselves about what they need to know right away vs. waiting for the next appointment. If they don’t care, they can just toss them.

But from my own experience, how this is handled reflects more generally the physician’s respect for their patients–and though I am sad to find out I have these issues, I am glad now that I have physicians who are true partners in helping me get the most I can out of my life.

A postnote: Specialists along the way sent copies of their labs to the original GP. Maybe 6 months after I’d tried so hard to reach her, she left 2 or 3 nervous messages on my VM asking how my liver was doing. I didn’t respond because ‘it is what it is’ but neither did I want to waste my time, since I had the distinct feeling she was more worried about a lawsuit than my life.

I’ll give an example. I’m caring for a patient with cancer. Looking at her previous hospitalization records she had been in a hospital at a previous time, and a report stated that the patient needed a followup scan, after 6 weeks, to determine whether the abnormality in the scan was benign or concerning for cancer. I don’t know if this was ever communicated to her, but she now has inoperable cancer in the site of the previous abnormality. Whose fault is this? Perhaps we can blame the patient, but I think it’s a problem with explaining the significance of findings to patients, especially patients with limited health literacy.

This study should prompt physicians to take a hard look at how they manage lab results in their office (we should all periodically do this anyway). A significant delay in informing the patient about important abnormal tests puts patients at risk and significantly damages the trust patients put in their physician. It also puts the physician at significant medicolegal risk. Unfortunately, it is that last point that puts the most fire under providers to fix a broken system.

This is a link to the study (which is available as a FREE full text article!):
http://archinte.ama-assn.org/cgi/content/full/169/12/1123?home

This is the link to the table which delineates what labs they were looking at, exclusion criteria, what they defined as “abnormal”:
http://archinte.ama-assn.org/cgi/data/169/12/1123/DC1/1

All that being said, it would be good to look at what is defined as an “abnormal test result” in the study. Are we talking about a Hct of 27 or a very slightly elevated BUN in a patient with a normal Cr and no history or risk of renal disease? Everyone would agree the former is truly abnormal, but the latter is of extremely doubtful significance and I don’t know anyone who would inform the patient about it. I have never actually measured it, but I would guess that a few percent of the “abnormal test results” that cross my desk are in the latter category.

They fail to update their address. I ask the patient rhetorically. “Do you have a teenage son? How’s that son about passing on phone messages?” Mother invariably rolls her eyes.

There was a news article a few days ago, about how many hospital pages go astray. The staff pages a doc who’s not on duty, that sort of thing. Hospital staff seems convinced that paging systems are magic and infallible, I swear.

I know in training, I personally pointed out that certain parts of our major University teaching hospital were dead zones for the hospital’s own paging system. We had near-misses. One resident got in serious trouble for not responding to pages from a department chairman. Chairman would not listen to reason when it was explained, another part of the bureaucracy had to intervene to save resident’s career. I know I had to manage a disaster on my own, with help from junior residents, when attending could not be found. Fortunately, successful management of disaster, but same chair wanted heads to roll. As in, mine. I demonstrated good-faith effort to find attending all over the complex, overhead pages, sent a couple medical students out to usual suspected places, call rooms and all that. Attending was legitimately in the dead zone part of hospital. Fortunately, I survived that storm, and affected patient did fine.

Not to point fingers, just that there’s a whole bunch of ways to drop the ball on communications. Paging, phone, E-mail, nothing is perfect, so I categorically tell patients NOT to assume no news is good news, and ALWAYS call our office if they receive no news within a week.

By pointing out all the ways the ball is dropped, the patient does not usually feel so bad if they don’t hear back, they just call and we make sure they know the results.