The Take-Charge Patient: How You Can Get the Best Medical Care
by Martine EhrenclouLemon Grove Press, 2012There's no doubt that the modern medical world can be a confusing and even frightening place for patients. Medical students and young interns can be insufferable (going giggling from room to room on a late-night hallway, waking patients unnecessarily merely in order to practice their "sincere" voice, asking totally redundant questions, not seeing or caring that it was actual sick, tired people they're playing with); residents can combine suddenly-inflated arrogance with what Patrick O'Brian's characters would call "shocking stupidity" (if you're going to get killed by any class of hospital practitioner, odds are hugely in favor of it being a resident); attending physicians can often (as the old joke goes) be very inattentive, both to the patients and to their own often sizeable shortcomings as human beings; surgeons have a disconcerting tendency to resemble the bad guy in "Human Centipede." Senior staff and Grand Old Men, like the Greek gods before them (only with better parking spaces), have trouble concentrating on individual mortals.And in addition to all these people, there's the place itself: there's always a bewildering amount of stuff going on at a big hospital, and the whole building, every hallway, chair, carpet, doorknob, desk, clip-board, pen, pencil, bedpan, curtain, and magazine, is a squirming, writhing Petri dish of infection (you may or may not be sick when you enter a hospital, but you will certainly be sick when you leave - unless you're one of the tens of thousands of patients every year who die in-hospital from infections they caught there). In short, ironically, hospitals are among the very worst places on Earth to be sick - if it weren't for the sheer, universal competence of nurses, the places couldn't function at all.So there's most certainly a need for books like Martine Ehrenclou's The Take-Charge Patient. Ehrenclou tours the country giving talks and seminars teaching people how to be more efficient participants in the hospital experience, and to the extent that the book tries to correct some of the silly, lazy oversights patients make, it's a godsend. Our author has interviewed dozens and dozens of medical professionals and patients, and she has distilled it all into a series of straight-talking common sense pointers. Keep copies of your test results; know the details of your past and present medications and procedures; be prepared before you consult with a doctor (and don't assume your doctor is), and don't feel at all ashamed to ask questions about anything. It all might sound self-evident, but the vast majority of patients still don't do any of these things, so Ehrenclou's book is much-needed (she includes checklists, wonderfully convenient for photocopying). Anybody having medical dealings - especially newly-diagnosed first-timers to the hospital world - will benefit from the practical parts of The Take-Charge Patient.And those same readers should flee in terror from the impractical parts, because Ehrenclou advocates a "take-charge" approach that will almost certainly alienate those readers from the very people they're hoping will help them. The problem is foreshadowed in the book's title, since the patient is by definition not in charge of their illness.On some level, Ehrenclou is worried about this contradiction - she early on lists the warning signs of "The Difficult Patient," the first of which is "Talk to their doctors as if they know more than the doctors do," and the last of which is "Are overly demanding." But the image of the take-charge patient she summons in these pages - bringing briefcases of past records to doctor visits, presenting the results of their online research, consulting about various medication alternatives, etc. - is the very portrait of a "difficult patient," the kind that immediately starts irritating any well-intentioned professionals within 100 yards of them. Ehrenclou continuously stresses that patients should be nice, should be courteous, should never shout or accuse - but much of her advice can only be interpreted as questioning the basic competence of the doctors involved, and there is no nice, courteous way to do that.It's a classic case of "Patient, heal thyself," since it doesn't take long in reading The Take-Charge Patient to conclude that Ehrenclou is one hell of a 'difficult patient' herself. This impression is strengthened by her assertion that during the writing of the book, she developed a "debilitating" pain in her pelvic region, a pain no doctor seemed to understand or correctly diagnose. Such an experience could very well be frustrating (even if - maybe especially if - as is clearly the case here, the "debilitating" pain is entirely psychosomatic). But no patient on Earth should contemplate for an instant responding to it the way Ehrenclou does:
After sixteen months of chronic pelvic pain, I'd seen eleven doctors. It took a story in a major newspaper to find the doctor who diagnosed and treated me correctly. I had no connection or referrals to get an appointment with her.I called the front office and was then referred to the doctor's nurse. I was told that the first available appointment was a month from the time I'd called.I began my campaign. My pleading was sincere because I had been in pain for so long and was desperate. I begged and pleaded not only with the doctor's nurse but with other staff as well. I told each person I spoke to about my chronic pelvic pain, how long it had lasted, how many misdiagnoses I'd had and how many doctor's I'd seen.
There's a term for people who act this way, and it isn't "patient advocate" (although, conveniently, two of the words in that term also start with 'p' and 'a'). And it isn't until late in The Take-Charge Patient that Ehrenclou even obliquely approaches the remote possibility that some of the drama here might be self-generated. She has some very good, sensible advice to give about choosing your own patient advocate (basically, a well-informed but personally untraumatized buddy who acts as a guide and information-filter for the patient - everybody undergoing a major illness should find themselves a patient advocate, and it shouldn't always be a close friend), and it's in the middle of that advice that the tell-tale note is sounded in a parenthetical:
I chose F. [for her patient advocate] because she was very smart, understood medical language, had experience managing medical practices and was very caring and supportive. It was not easy for me to ask her. I have always considered myself to be strong, both physically and emotionally (not to mention controlling), so asking someone to help me was out of character.
Controlling indeed: far too much of The Take-Charge Patient is a barely-disguised playbook for how to bully medical care professionals (God in His infinite mercy help a patient who tries half this stuff on a busy, 50-something charge nurse - the result would be what Lenny Briscoe might have called "very justifiable homicide"). And bullying is never justified; the fact that Ehrenclou has seen it get 'results' only means that, sadly, bullying sometimes works.So you patients and prospective patients out there: buy The Take-Charge Patient for its good parts, its deftly demystifying chapters on picking a personal physician, dealing with specialists, and keeping your facts straight. When Ehrenclou urges you to get involved in your own medical case, do your research, keep alert, and ask for clarification of anything you don't understand, by all means listen to her - for all that stuff, there's simply no better book on the market than this one.But take the other parts of it with a grain of salt. No operatics. No brow-beating. And let's leave the national news media out of it, shall we?
