Thursday, May 24, 2007

The Pushy Patient

Alison writes:

Last week, MWWAK posted about using her doctorly pull to get an urgent scan when the person who was supposed to arrange it for her didn't. She was a little worried about the ethics of it and wondered what the rest of the world did.

A twin post from Kevin MD is about a woman who died because she was labelled a complainer and was refused timely treatment.

Could you guys do a post on how to be aggressive/assertive on one's own behalf, or on behalf of someone else? As a psychiatric patient I am terrified of making it easy for someone to label me borderline and "treat" me (or the person I am attempting to advocate for) by telling me to go away and solve my own problems. So instead I put on my absolute most compliant self and am very, very Good. This of course makes it easy for someone to decide that I don't need help, or not urgently, and tell me to go away and solve my own problems.

[posted by Dinah]

Thanks for the question, Alison, though I'm not sure that I'm particularly qualified to answer the What Should I do? Psychiatrists know about mental illness, not necessarily about how to make every relationship issue (for example, the one between you and your doc) go smoothly. But, if you just want my opinion, I always seem to have something to say.

First, MWWAK, my favorite obstetrician blogger, has been writing about how sick she's been feeling for some time. She's been out of work, having GI symptoms, frustrated that she can't get an answer or feel better, and when she asked a GI fellow if he could help, the elusive colonoscopy happened, quicker than if she'd gone through the usual secretarial channels. She's been diagnosed with Ulcerative Colitis, and she wonders if it was ethical to back-door herself to the front of the colonoscopy line.

I would contend, as I wait for that job offer as the next Ethicist for The New York Times, that the patient's job is to worry about the patient and not about the greater good of society. A person who is suffering, in any sense of the word, is entitled to advocate for themselves in any reasonable way (this does not mean causing someone's death in order to obtain their organs). That MWWAK called someone and said, "I'm having trouble negotiating this, can you help me?" is simply a request for help by a patient, the fact that she is a physician seems pretty irrelevant here. The patient is entitled to want their suffering to end. In my opinion, MWWAK is free and clear; if there was a question it would be, should the fellow have put her to the front of the line? That wasn't asked, so I won't go there, but it seems to me that life is inherently unfair, and one could ask why some people get better access to the best physicians because they have more money, better insurance, live closer to medical centers... or why friends of the owner of a baseball team get World Series tickets.

The LA Times article you pointed to on KevinMD is nothing short of disgraceful and tragic. A woman comes to the ER three times with abdominal pain. The third time she is told there is nothing they can do, she falls to the floor writhing in pain, is ignored while the janitor mops around her, and she dies of a perforated colon. She was too sick to advocate, but apparently she tried, her boyfriend stood with her dialing 911 and was told that help couldn't be sent to a hospital ER. Maybe someone could have put her in a cab and taken her to another ER? Maybe the boyfriend (who some how got arrested in the deal on an outstanding warrent...or was that the patient? oh it was confusing) could have demanded to speak to the ER attending or a hospital administrator? I'll stick with disgraceful and tragic, and let's hope this isn't a common thing.  [Edit: see also this Washington Post story on an assertive pt with scleroderma. -Roy]

So psychiatrists do worry that psychiatric patients get blown off when they present with medical complaints. Is it true? Maybe. Now days, so many people are on psychotropic medications, that the doc can be just as easily as the patient. All the silly commercials, I believe, may help decrease stigma. A psychiatric patient getting medical care needs to tell their doctor about any psychiatric condition that requires medication.

So in a vague way: How to Be a Patient. By someone who isn't very experienced and hasn't worked in a general medical setting in some time.

It's fine to ask questions, best to come with a written list. It's fine to look things up on the internet before and to be an educated patient. It's fine to ask if there is a way to expediate getting tests done more quickly-- the answer may be no. So yes, be assertive, and if you're ever actually a patient in a hospital, be nuts. Know exactly what pills you're to be given and verify what each pill is. Don't let anyone do anything to you without being certain you know what's going on. If you're not conscious, this isn't possible, but lots of mistakes get made in hospitals.
It's fine to assert yourself and assertiveness and compliance are not mutually exclusive. It's hard to say how much or when and what exactly it means to be assertive. If there's nothing emergent going on and you have an ongoing relationship with the doc, why not discuss it? It's always reasonable to ask what the diagnosis is, what the treatment options are, what the risk of having or not having any given test or treatment is. Try not to put your doctor on the defensive. Generally, it's good not to yell, scream, or threaten, but after reading the LA Times article....
Maybe Roy has something more useful to add?