You are off to the doctor’s office, grasping your documentation: your insurance card, your VISA for co-payments, your list of medications, prescribed and over-the-counter. What else do you need?
You need to bring a Medical Friend, someone who – notwithstanding all the HIPAA rules about privacy – will cling, Velcro-like, to you as you enter, not just the waiting room, but the examining room. The friend will be with you for the questions about family history, for the prodding and poking, for your description of symptoms, for the doctor’s prescriptions, for the nurse’s follow-up instructions. And if you go to the hospital, that same Medical Friend will follow, still velcroed to you, watching every step, to see that whatever hole exists in “the system,” you won’t fall through it.
A patient-advocacy organization, PULSE, (http://www.pulseamerica.org/) urges all of us to get health care alter-egos. Especially in the hospital, where patients can suffer from inadvertent mistakes, inadvertent neglect, PULSE urges notebook-toting Friends to heed the FILMS warning.Falls – let staff know if patient is liable to fall; Infections – make sure staff have washed hands; Literacy — read all the forms; Medications – ask for explanations, make sure drugs are in the original wrappers; Surgery – make sure staff have marked the site, ask about antibiotics, get warm blankets after surgery. The diligent Medical Friend should swap the notebook for a laptop, to chart all the details.
The cautionary advice is useful, and the need for a Medical Friend is real. After all, a sick patient is not poised to morph into a vigilant overseer. It is hard to imagine a patient lying in a hospital bed, waiting for a test that may foretell a grim diagnosis, ask the diagnostic team on rounds whether they have all washed their hands. Or to rouse himself to verify that the surgical site is well marked. Or to understand (even read) the multi-page forms. (Ironically, our enthusiasm for “consumer-driven health care” would make the patient into the classic purchaser, though nobody shops for a car when tired, feverish, maybe moribund, let alone shops for the cheapest hospital).
The need for a Medical Friend, though, bespeaks a sad mistrust in the healers who are supposed to heal us. We fear incompetence. The profusion of internet-fueled information has made us skeptical of whatever our physician suggests. We want him/her to justify the recommendation, vis a vis all the other treatments out there. In California, voters may be deciding whether to make all physicians take drug tests (“Pee in a Cup” initiative).
In the hospital, we are – justifiably – leery of errors. We don’t trust staff to mark the surgical site, to wash their hands, to give the correct dosages of the correct medications. We worry that with every shift-change the incoming staff won’t know us. We fear that the hospitalist won’t understand our malady the way our primary care physician does. We suspect that money has trumped our health. Has a restricted formulary dictated our prescription? Does our physician earn more money, the fewer patients he refers to specialists? Did the hospital discharge us early to speed our recovery at home, or save money? Does our physician own the MRI facility?
Marcus Welby has long been dead. Indeed, he, with Dr. Kildare, may have always been iconic media-creations of what we wanted to believe. Today we no longer have that iconic ideal. We see the system as a money-based organizational nightmare that endangers us.
As for a Medical Friend, you need a person who knows you, understands your medical condition, has time to spend on-site, by your side, and can enter into discussions with staff on your behalf. PULSE suggests a relative. But many patients don’t have close relatives. And even close relatives may have neither the time, the knowledge, nor the desire to be the kind of advocate a patient needs.
Perhaps another tack is to improve the system – to cut down on errors, to minimize incompetence, to put patients’ health above profits – in short, to make us trust our healers more.
Joan Retsinas is a sociologist who writes about health care in Providence, R.I. Email firstname.lastname@example.org.
From The Progressive Populist, July 1-15, 2013
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