Going to Get Really Sick? Follow These Rules

Gretchen Rubin is trying to find happiness.  Her blog, The Happiness Project, chronicles her year-long journey, in which she tests “every principle, tip, theory, and scientific study [she] can find, whether from Aristotle or St. Therese or Martin Seligman or Oprah” to help her become happier.

Lately, she has been reading dozens of memoirs about illness.  Here are the lessons she’s gleaned from them about dealing with doctors and hospitals (though they could just as easily be applied to dealing with lawyers and law firms):

You need to educate yourself as much as possible. Doctors don’t have the time or the emotional energy to explain all the possibilities to patients and their families.

Write everything down. It’s hard to take in information the first time you hear it. And keep thorough records for insurance purposes, too.

Every additional course of action carries pitfalls: side effects, pain, the difficulty of recovery from surgery, subsequent infections, time in the hospital, the real possibility of medical mistakes. So resist the impulse to “do everything.”

Double-check everything you can. When my father was in the hospital, his doctor told him not to drink anything, then a nurse urged him to take a pill with water—which would have been disastrous, if he’d done it. A friend who went through chemo had a special notebook where she wrote down her prescriptions, and checked her notes against the chemo bags before she allowed each treatment to proceed.

Before following a course of treatment, press as hard as you can—is this procedure absolutely necessary (e.g., do you really have to have that enema)? How painful will it be? How invasive is it? What other options exist, and are any of them less invasive, painful, etc? What will happen if the procedure isn’t done? Arthur Frank refused to sign a consent form when his doctor didn’t explain an operation to his satisfaction—and then ended up not having it at all.

Note that the medical staff often minimizes the discomfort and difficulty of treatments. Perhaps this arises from a desire not to be discouraging, but the effect is often to make it difficult to plan (will it really be possible to go back to work within a few days?) or to make patients feel that they’re complaining unreasonably.

Stay with the patient as much as possible. I don’t know what the visiting rules are in hospitals, but having read these books, I don’t think I’d leave a patient alone there, ever, if I could help it.

Insist on understanding the true prognosis. In several accounts I’ve read, people reflect sadly that they didn’t really understand that the patient was going to die. And so they made choices they regretted—for instance, resisting using methadone, despite its effectiveness in fighting pain, because of its addictive properties. A ridiculous concern to someone who will die in three months! Terrible news is hard to hear, and it’s hard to give, so if you want to know, you need to push. Stan Mack recalls that Janet’s doctors’ talk was “ambiguous.” He recalled a doctor saying, “You don’t have a curable cancer anymore, but with medication there is a subset of women who…” They didn't understand what they were being told.