A neurosurgeon’s final message

Paul Kalinithi, writing to his infant daughter in his last op-ed before succumbing to lung cancer:

That message is simple: When you come to one of the many moments in life when you must give an account of yourself, provide a ledger of what you have been, and done, and meant to the world, do not, I pray, discount that you filled a dying man’s days with a sated joy, a joy unknown to me in all my prior years, a joy that does not hunger for more and more, but rests, satisfied. In this time, right now, that is an enormous thing.

It’s a rare thing for us to write to the ones we love before we go, let alone to share such poignancy in order to touch others as well. We don’t write meaningfully to each other very much anymore, especially when it counts most. We could do better.

When USMLEWorld spying on you is the harbinger of our future despair

From Cory Doctorow’s How Laws Restricting Tech Actually Expose Us to Greater Harm:

Because while we’ve spent the past 70 years perfecting the art of building computers that can run every single program, we have no idea how to build a computer that can run every program except the one that infringes copyright or prints out guns or lets a software-based radio be used to confound air-traffic control signals or cranks up the air-conditioning even when the power company sends a peak-load message to it.

Why? Because for such a system to work, remote parties must have more privileges on it than the owner. And such a security model must hide its operation from the computer’s normal processes. When you ask your computer to do something reasonable, you expect it to say, “Yes, master” (or possibly “Are you sure?”), not “I CAN’T LET YOU DO THAT, DAVE.”

Which, though actually quite different, reminded me of one reason I always disliked USMLEWorld’s zealous efforts to prevent intellectual property theft. From the official Terms and Conditions:

The UWorld software is designed to access your computer system’s clipboard during use of the UWorld software. While a test is in progress, the UWorld software shall disable all clipboard functions of your computer system (including, but not limited to, copy-paste-print and save-to-disk functions). Furthermore, the UWorld software shall monitor all processes on your computer to determine if there exists any applications that could be used (intentionally or unintentionally) to copy contents. Simultaneous use of such applications (hereafter referred to as “dubious applications”) with the UWorld software constitutes a violation of this agreement.

That’s an amazing amount of system privelige we give to a small software package out of Irving, TX. In the future, how much control will we be willing to give up to companies and governements in order to use the products we want?

Oliver Sacks learns he has terminal cancer

Oliver Sacks, in his moving NYTimes op-ed about learning that his ocular melanoma has metastasized to his liver:

I have to live in the richest, deepest, most productive way I can.

This will involve audacity, clarity and plain speaking; trying to straighten my accounts with the world. But there will be time, too, for some fun (and even some silliness, as well).

I feel a sudden clear focus and perspective. There is no time for anything inessential. I must focus on myself, my work and my friends. I shall no longer look at “NewsHour” every night.

Sacks’ version of “live like you were dying” is exactly what you’d hope/expect, showing his depth and ability to turn his careful consideration and clinical acumen internally, just as he did in his New Yorker essay about prosopagnosia (face blindness). Read the whole op-ed (and the essay too).

“Sudden clear focus and perspective” seem harder and harder to come by in the contemporary era, but I’m adding tacking it on late to the resolution list this year. I still remember first reading and being inspired by Sacks’ An Anthropologist on Mars and The Man Who Mistook His Wife for a Hat in high school, probably the two books which most shaped my early interest in neuroscience and medicine. He’ll leave a tremendous legacy.

 

Should your radiologist tell you the results of your scan?

Probably not. But some interesting lines from Gina Kolata’s article in the NYTimes:

Dr. Christopher Beaulieu, chief of musculoskeletal imaging at Stanford:

At that point the radiologist may be capable of transmitting the information but the obvious next question for the patient is, ‘What do I do now?’ which, as nontreating physicians, radiologists are not trained to answer.”

This issue here is not that radiologists aren’t “trained” in what happens next (in many cases, of course they are!)—it’s that radiologists don’t actually do what happens next. If you aren’t going to provide treatment, you probably don’t need to be offering patients their options, particularly if you aren’t privy to their history.

For now — with one big exception — how quickly a patient gets the results of a scan, including M.R.I.s, PETs, CTs or ultrasounds, can be idiosyncratic and depend on the particular doctor and the particular patient.

Yet patients want to hear from radiologists, the groups say. One admittedly unscientific indicator was patients’ comments to the American College of Radiology on Twitter. They said they did not want to wait for results and could not understand why a radiologist would tell a doctor their results but not them, said Dr. Geraldine McGinty, chairwoman of the group’s commission on economics.

Realistically, patients want their results quickly and probably don’t care who tells them. The main issue here is patient scheduling. It’s not fair to patients to have an MRI one day and then have an appointment with the ordering provider two weeks later. Many physician schedules are fully booked with routine follow-ups, leaving no room for add-ons when unexpected scan results come up. In some thoughtfully scheduled clinics, patients have a scan in the morning and are seen that afternoon. That’s ideal.

If a patient then still wanted to speak to a radiologist (leaving aside the issue of the non-reimbursable time spent), I think both the radiologists and the referring clinicians would be much happier having that happen in a context in which the definitive management discussion would happen immediately afterward and not in some yet-to-be-determined future appointment. If the patient finds out before the referring provider, then the system breaks down. And learning you have cancer only to be told you won’t be seen by the oncologist until three weeks later is also not therapeutic. We need to be more thoughtful in how patients are scheduled for follow-up—that’s the crux.

“The chance of your actually seeing a radiologist is almost zero,” said Steve Burrin, a physicist and retired vice president of The Aerospace Corporation. Mr. Burrin, 70, who has lung cancer and lives in Los Angeles, has so many scans — CT, M.R.I., PET — that he decided to take matters into his own hands. Now, he immediately asks for a copy of his scan and tries to understand it himself.

I do though think the current state of patient accessible information is problematic. More and more patients have access to their raw reports, which are written for a physician reader.1 The information, terminology, and certain turns of phrase can be bewildering and frankly misleading to patients. If a patient report states there several “indeterminate renal hypodense lesions” which are “too small to characterize,” that sounds super mysterious. But they’re really just (essentially always) tiny cysts of no clinical consequence.

If the future is centered on more transparency and patient empowerment, it would probably be better if a patient-centered report was incorporated into the medical record with the salient points written in accessible language. This is similar to the approach used by WebMD and Medscape, which are owned by the same company, where there are pages on the same topic with one set of data shown to patients and another set to physicians.