This site will no longer be updated regularly, so change your bookmarks, change your RSS feeds, and please, come visit.

Many thanks to WordPress.com for their excellent site and attentive support.

Every medical student takes courses in physiology, pathophysiology, histology, and pharmacology. A new science has recently been added to this basic battery: evidence-based medicine, the science of critically searching and reading the scientific literature. Finding proof for our daily practice as doctors has begun to play an enormous role in patient care, and it shows in medical education and in the dollars (euros, yen, et al.) committed to research, both in industry and in academic institutions.

The formidable amount of scientific evidence out there doesn’t mean we know everything, however. Although science answers many questions, it doesn’t solve every problem. Sometimes, the evidence confuses more than it proves—for care providers, for patients, and for the public at large.

This Grand Rounds, let’s talk about proof. I want your perspectives on the interface of scientific evidence with health and health care.

For example, tell us about health care providers using (or misusing) evidence in practice. Tell us about the confusion caused by conflicting or misinterpreted messages from the world of medical science. Tell us about the emotions that come up when we prove things, when we can’t prove things, and when proving things doesn’t make a damn bit of difference. Tell us how good a job we’re doing translating what we know about health into the sound use of funds.

Be creative. Or not. Whatever you do, send it to signoutblog@hotmail.com by midnight (EST) on Sunday, January 21. Please use Grand Rounds as the subject for your email, include the link to your post, and write a short (2-3 line) description of your submission. If you have never done so, please review Nicholas Genes’ guidelines prior to submitting. Please do not submit any post that promotes a product or service.

References are in no way necessary, but are certainly welcomed.

I’ll limit the number of posts I use to 30. Advance apologies to writers whose work is not included in the final product.

Now, bring it!

His tumor, called a neuroblastoma, is a cancer of the sympathetic nervous system. Its prognosis can vary significantly with the age of the patient it affects and with characteristics of the tumor itself. This boy’s problems had started at the age of 3, when he came to the emergency department with a persistent limp. After a month of therapy directed at other diagnoses, some blood tests showed bone marrow leaking into his blood. A bone scan showed lesions in his hip, and the rest of his workup revealed metastases to lungs, liver, brain, and spine. Only three out of every 10 kids with disease like his survive it.

Over the time I was on service, I was called to his room nearly every night I was on call. Every time I walked through the door, I wondered whether he knew how sick he was. Although I know his oncologist discussed his diagnosis with his parents many times, I wasn’t sure that she’d ever discussed it with him. And if she hadn’t, I wasn’t sure that was a bad thing.

Talking about death and dying is the new black–it’s all over medical school curricula, residency program workshops, and newspaper science sections. Still, as a trainee, it’s hard to know how to apply the conversation differently in children than in adults. I do know that abstractions, including death and the future, aren’t as meaningful to young children as they are to grown-ups; should I still try to explain imminent death to the sickest kids?

Probably not. In a fascinating study published in the New England Journal of Medicine in 2004, 429 parents of terminally ill children who had died were asked about conversations and circumstances around their children’s deaths. Parents of young children (aged 0-4 at death) were far less likely to regret not having talked about death than were parents of young adults (aged 16-24 at death). Presuming parents to be the best judges of their children’s comfort–and the harshest judges of their own abilities to provide comfort–this suggests to me some aggregate sense that young children won’t be comforted by verbal communication about death.

In older children, it’s less likely to be developmental concerns that drive us away from talking about death. About doctors’ reluctance to cause pain by revealing a poor prognosis, pediatric hematologist-oncologist blogger Blog, MD writes that ”our fears are our own problem.” Those fears are worth getting over: in the same study cited above, 147 (34%) parents did talk about death with their child, and exactly none of them regretted it.

Ultimately, parents may be our best meter for terminally ill children’s readiness to talk about death. Even if they’re not the most accurate gauges, they are the ones who will stay up nights replaying conversations with their children for years after they’re gone. I’d like them to have had conversations they can live with.

I went in last night at about 3 a.m. to examine him because he had spiked a fever. When I laid my hand flat on his belly, he opened his eyes and said, in full voice, “Don’t hurt me!”

In my training, I do both adult and pediatric medicine. However, although I’ve been on pediatric rotations for months now, it’s the nature of my program that I spend very little time actually talking to and examining my pediatric patients. It’s possible that I know less about what kids are like now than I did before I started my intern year.

Perhaps that’s why I was stunned to hear him tell me not to hurt him. Adults rarely use those words–they usually just cringe, or make a grim face, or sit quietly. Perhaps they’ve lost the sense that they have a right to be comfortable.

This is developmentally appropriate, on some level: understanding that some unpleasant things are good for you and must be tolerated is a part of maturity. I only hope that it is maturity and not a sense of powerlessness that causes so many adults to remain silent when they anticipate pain.

In my overnight call-addled state, it seems like a good idea to try to hear this boy’s voice every time I go in to see a patient–perhaps especially when I return to adult medicine, which I do in two weeks.

For several weeks in December, I worked with an adolescent medicine doctor who was like magic. Watching him massage our spectacularly manipulative patients into compliance was like watching someone fit a greased elephant into a cigar box. His motto was, as he told me repeatedly, “Every behavior that persists is being rewarded on some level.”

We had a patient for a time, an 11-year old girl I’ll call Precious. Precious had previously been diagnosed with lupus, a chronic and very real illness, but had been admitted this time for abdominal pain. Shortly after her admission (and her extensive workup), it became clear that her acute symptoms were what we politely call “inorganic”–meaning, they originated in her mind and not in a localized disease process.

Precious had been hospitalized many times before. She knew what worried doctors, and early on, she made damn sure we worried about her, often through disingenuous means along the lines of faking abnormal vital signs and abnormal urine output. Dr. Magic ignored these bids for attention and instead began to educate Precious about coping with her functional abdominal pain. At this point, she began refusing to eat, drink, or even sit up, saying these things caused her too much pain.

She was good. Even Dr. Magic felt challenged. 

“She really, really wants to be in the hospital,” her nurse said. Dr. Magic agreed. He thought that, while some of her pain might be real (as in a somatization disorder), some of it might also be made up (as in the very different factitious disorder)–and all of it originated in her head. There was a clear reward for acting sick: Christmastime in a children’s hospital means loads of activities, attention, and toys. She’d only get these things if she remained admitted as an inpatient, and she’d remain admitted if she remained sick. 

You don’t have to be pubertal to understand the logic, and yet I still had no idea how to get her to act as well as she was.

What we needed to do, Dr. Magic said, was to realign the axis of behavior and reward around something we could actually give or take away. We then needed to use that thing to stop rewarding her bad behavior–acting sick–and start rewarding good behavior–coping with her pain, whether real or not. 

From the day of her admission, Precious’ room had been filled with the artwork she loved to create, along with piles of distractions provided by her doting family and by the hospital, itself. Now, Dr. Magic took me into her room, where we took down the drawings and hauled out sacks of games and toys. He explained to Precious how things would work: she could eat and walk and, little by little, earn her stuff back. Or she could lie in bed and be hungry and bored. 

In other words, Christmastime in the hospital wouldn’t be fun unless she demonstrated coping skills. And the second she demonstrated coping skills, she’d go home. It was an ingenious trap.

She knew it, too. I was on call that night, and late into the evening, I could hear her sitting in her bed and screaming in frustration. Dr. Magic popped in after an evening meeting. “This is a good sign,” he said, then disappeared in a puff of smoke.

The next morning, I woke her while listening to her chest. “How are you feeling?” I asked. “It hurts to swallow,” she said, “but it’s something I think I can cope with. Can I go home?”

Yes, she could.

But last night, a colleague reminded me of something that brought home the true meaning of Christmas: today, I am exactly halfway through my intern year.

Hallelujah!

We even had our own Christmas miracle: we got a kid with a huge neuroblastoma in his liver down to the CT scanner at 2 a.m….and he wasn’t bleeding into the tumor. (The real miracle is the first part.)

Huzzah! I shall celebrate by sleeping through the better part of daytime without showering first.

For patients, hospital discharge is a happy moment. Leaving the hospital means leaving behind the unflattering gown, the interrupted sleep, the food that does not resemble itself, and the constant parade of people poking and sticking and looking at your business. Most inpatients eagerly anticipate discharge from the moment they are admitted.

For residents, hospital discharges are a little different. Patients leaving the hospital require instructions, follow-up appointments, outpatient testing, prescriptions, and sometimes, home care services. Their health care providers–all of them–require detailed information about their hospital course and about the plans for their medical follow-up. In my hospital, the responsibility for choreographing this administrative hoo-ha falls directly on the residents, and mostly on the interns.

Deep inside, in the part of me that is not an intern, I am happy for patients when they get to leave the hospital. But the rest of me–especially the part that operates computers and makes phone calls–seethes. Yesterday, after spending hours navigating a web of bitchy clinic receptionists and printing, then reprinting, this time on the right paper and on the right printer, I came to an unpleasant realization: I had spent more time discharging these patients than I had cumulatively spent face-to-face with all of them during their hospitalizations.

In theory, it is my job to treat people’s illnesses in order to get them medically ready for discharge. But yesterday, I spent so much time doing paperwork that I wasn’t able to think about or really, take care of, any of my patients who were still in the hospital. Getting patients home on paper left me no time to get patients well enough to go home in body. 

There is a light. Someday, when I am an upper level resident, I will ask my interns how their discharges are coming along. Oh, they will say, we are beginning to feel dead inside. And from my perch at a patient’s bedside, where we are together reviewing the nature of their disease process and the elements of their management, I will say, Let me help you with that. Which printer are you using?

I also made it into WordPress.com’s A-Blog-A-Day column the other day. They called me “interesting,” which, as I recall, is fairly synonymous with “not interesting.” Whatever. It’s exposure.

But enough about me: anyone with an interest in verse should get their hands on this newly published poetry anthology called Body Language. The poems are written by and about the medical profession, and the few entries I have read so far are complicated and beautiful in the best of ways.

Now back to our irregularly scheduled programming.