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?


Jessica said...

You mention that if hospitalized to make sure you are reciving to correct medications if at all possible... and I agreee 100% with that!! I knew this before my first stay in the hospital in the psych floor when I was 17... the urse came to give me my meds and it was not handled too well!! lol Quite funny now though... I was on a large dose of a med for something it was not usually perscribed for and being such a large does they only had a smaller dose there and had to give me 4 of that pill instead of the one i usually took so it looked different. Well when i asked the nurse what it was for he said my stomach and I knew that i wasn't on anything for my stomach. Not wanting to be there and freaking out that they were making me take meds I didn't usually take I started bawling!! and freaked out majorly!! But it all got strightned out... when I was hospitalized there a different time and had that same nurse I would joke with him and make him look up in my chart what each and every med i was on what I was on it for! Diffently advocate for yourself! If you don't who will!!?? It's not your doctors job to be that advocate! It's YOU!

Emy L. Nosti said...

I was almost unnecessarily/accidentally irradiated which could've delayed actual treatment for 6 mo & left me sans thyroxine an extra month (not fun)...all because, literally, some resident I'd never even met didn't know the UPS delivery schedule for the I-131. The doc in charge (locum tenens and I was his first thyroid cancer case ever, I later found out) actually called in another 4 men in white coats for the sole purpose of intimidating me into treatment. I can only imagine what the LT doc was saying about my state of mind before his and the resident’s incompetence were brought to light.

So, IMO, there's much to be said for being persistently obstinate if things don't seem right. Demanding to talk to my endocrinologist directly (and thus interrupting her appts 3X) is the only thing that resulted in the correct treatment—because, unvbelievably, said resident was also incapable of playing messenger boy without relaying half-truths to cover his butt. Ugh, I’m still pissed 3 months later!

Patients should stop being (politely) "pushy" when doctors become infallible gods—and not just in their own minds.

Alison Cummins said...

Thanks, Dinah!

My question was intended to cover how to get mental health care, not just physical health care. Today I have a GP I trust to care for my physical health issues and a psychiatrist who takes me seriously and who I work with well.

However, I still feel bad today though when I look back on the two years I spent trying to get a (mental) health practitioner to treat me for depression. GPs would dismiss me within the fifteen-minute interview as clearly not depressed. (I present well.) During those two years I got sicker and sicker until I could no longer get it together to present well. Then I got taken seriously. But not before losing two years of my life. When your doctor laughs at you for thinking you are depressed, what are you supposed to say?

I was not able to work much - eventually not at all - during this time but struggled to pay for talk therapy with psychologists. One in particular watched me become sicker and sicker and insisted that I needed to resolve my issues with my mother, "because that's what most women want." When I went on antidepressants she suggested I go off them because they interfered with talk therapy.

Oh, today I have a psychologist I like and trust, referred by a friend. Back in those days I didn't have friends... Then, I made an effort to talk about my mother. My psychologist made it clear that the fact that I wasn't talking about conflict meant that I was supressing things. I didn't agree, but who was I? I was the one who wasn't managing. She was the one with the PhD and the nice house.

When a psychiatrist at the local hospital says that your brother who barks all night, laughs at jokes told by invisible people and fears mirrors is not schizophrenic, just a rebellious adolescent; or not schizophrenic, just stoned; or schizophrenic, but not treatable until he successfully completes a detox program; what is the reasonable response? When the police arrest him, they put him in the mental health unit. At the homeless shelter, they put him in the mental health unit. But the mental health system won't take him. Well, they eventually did. He now has a diagnosis and treatment for schizophrenia. But it took a while. A very stressful while.

The doctor who eventually admitted him to the hospital said that he presents well too, and that this interfered with appropriate diagnosis and treatment. So he could get it together to pass a fifteen-minute interview (though one psychiatrist diagnosed him while he was unconscious and discharged him without ever speaking to him, so he didn't even need to present well) but anyone who spent more time with him than that knew there was something serious going on.

My brother loves his olanzapine, but it made him feel nauseous. Sometimes he vomited in the morning. Eventually he was vomiting every morning. This lasted for months.

He doesn't have a GP yet; when he saw my parents' family doctor for his nausea and persistent abdominal pain the GP said to stop smoking marijuana (which he pretty much had, but no, not completely, and he started smoking more as the pain got worse) and come back. (OK, so that's what my brother said the GP said; it was probably more complex than that, but that's what my brother took away. In any case, he didn't get a GI workup.)

Eventually his psychiatrist (a medical doctor) who he sees every month told him that if he felt bad he should go to the ER. He thought she - his psychiatrist - was his doctor; she apparently did not agree. Ok, off to the ER. It took three visits to the ER to get taken seriously, at which point he was admitted urgently to the thoracic surgery ward and scanned at 3:00 in the morning.

So if my brother is seeing medical doctors who hear reports of persistent nausea and worsening abdominal pain, is going to the ER with these complaints and is being repeatedly sent away... how do you say No, Do Not Send This Man Away without getting the "difficult patient" or "difficult family" label?

If I, as a non-medical person, think that daily vomiting is a serious problem but I can't get a medical person to take action I feel is appropriate, how am I supposed to argue? They're the ones who went to medical school, right?

If we go strictly on "it's up to the patient to advocate based on the amount of pain they are in," this patient is schizophrenic and probably not perceiving as much pain as someone else might. That didn't prevent constant vomiting from eating a hole through his esophagus. So it really ends up as 'my lay opinion about the seriousness of the situation trumps your medical opinion about its seriousness.' Which of course it doesn't, even if I'm right.


So do you just go to all the ERs in the city, lying about having been to the previous one, until someone schedules a thorough workup? Do you telephone your brother's psychiatrist and tell her that it's her job to refer him to a GI specialist?

My question is not so much about how to make an appointment, but about what to do if you don't think you're being treated appropriately once you do get the appointment.

This is an issue for everyone, but especially so for a psychiatric patient whose faith in their own judgement may be compromised. And in the psychiatric field, turning away someone in obvious distress can actually be a treatment for personality disorders - making the situation even more complicated.

Maybe there is no advice to give. Maybe it's just like that. My brother and I both did eventually get treated for our respective mental and physical ills. It just took a lot more effort and humiliation than seems necessary. But maybe it is necessary. Maybe that's just the way it is.

Alison Cummins said...

Oh RE the psychiatrist who discharged my brother without interviewing him. He had a court order for a three-day psychiatric evaluation based on danger to self and others. This had been obtained from a judge with collaborative efforts between my parents and the homeless shelter who had my brother in their mental health unit but who couldn't treat him, couldn't keep him forever, and were worried that he was scaring the other residents.

The police arrested him and took him to the hospital for evaluation. He was combative. He was sedated with Haldol immediately. The psychiatrist diagnosed him as cannabis intoxicated after seeing him sedated - that is, unconscious.

The only thing you could see about my brother in that state was that he was young and black. I have no way of knowing whether that contributed to the psychiatrist discharging him against court order and without ever talking to him. But he did.

And my brother did get treatment anyway, eventually. Just not then and there. (What if he had lived in a town, not a city and only had one choice of hospital? What is one supposed to do then?)

Zoe Brain said...

It's life stories like these that make me realise yet again how lucky I've been, and restores some sort of perspective.

I just wish I could help.

But 49 is really a bit old to retrain as a therapist, and besides which, from my time on support forums, I know I lack the necessary ability to distance myself from the patient. You have to care - but not be over involved. Tricky.

That's why I want to thank the three shrinks, because they're doing something I can't.

And alison - I don't know if it will do any good, but very best wishes to you and your brother for a swift and complete recovery.

Midwife with a Knife said...

I go away for a week, and come back to find you talking about me! ;)

My only lingering qualms about calling the gi fellow on call are: 1) it seems a little intrusive to page the gi fellow on call and ask for help wiht a personal medical issue (although our gi division is known for their pro-professional courtesy stance). At the same time, he didn't mind (he seemed pleased by the fact that I called him), so I guess that means I shouldn't worry and 2) A "normal person" can't just pick up the phone and page the senior gi fellow, which doesn't mean it was wrong for me to do so, but I was rapidly falling through the cracks, and as best as I can figure, I was well on my way to needing to be hospitalized if I didn't get better. I worry that if a non-doctor (aka normal) person had been in this situation they would have ended up in the hospital, and possibly could have become quite ill.

The silver lining is that this week, my doctors office did schedule the scope (too late, but they did come through).

I think that the key for people advocating for themselves is to be persistent.

The other suggestion I have is for healthcare providers, and I teach this to residents is to never make assumptions about the likelyhood of a severe illness based on things like a psych history or the fact that the patient is annoying or is obese or has a history of chronic pain or of noncompliance. Unfortunately, there's a huge amount of bias in medicine against people with the above problems.

I'm going to invoke a non-pc quote from an old, crotchety, but very good former attending of mine. He always says, "Remember kids (yeah, he called us kids), crazy people have bad things happen to them more frequently than other people, and they're at higher risk of dying because docs take them less seriously. DON'T DO THAT!". Again, non-pc wrt the use of the word, "crazy", but I think the sentiment is important and good.

Anonymous said...

But is 49 really too old to train as a therapist?

Anonymous said...

It is always okay to say, "I'd feel better getting a second opinion," especially if treatment has not yielded the desired results. It's fine to follow that up with "I'd REALLY like a second opinion." And it's fine to walk out the door and make an appointment for your own second opinion yourself.

Sometimes when you're really sick, you're at the mercy of the system and you're stuck trusting it for better or for worse. I wish you all the best of care, and if I'm ever in that position, I wish me the best of care, too.

MWWAK: Welcome back, Hope you are feeling better. What's a NORMAL person? Your job is to advocate for your recovery in any way you can. I assure you that if a normal person was having your problems, and his best friend happened to be the Chief of GI (or the friend of the wife of the Chief of GI, or the guy who once sold the Chief of GI a football ticket), then that person would call and the Chief and get his care negotiated.

Advocating for yourself== if you paged at a reasonable hour, if you were polite and didn't scream or curse, if you asked and didn't demand, you weren't out of line. The fellow felt good that he could help you and you sound appropriately appreciative.

So when the GI fellow pages you and says his wife is pregnant and her ob is dismissive of her concerns and things just aren't going well, and could you possibly help him negotiate a setting where they might be more comfortable....?

And I promise you that Jules will get more developed. I have contemplated threatening to go on strike from Shrink Rap if more people don't read my novel, but that wouldn't be very gracious, would it? Plus Clink has been very encouraging.

Midwife with a Knife said...

dinah: I'm feeling much much better, thank you. Maybe not quite 100%, but really pretty good.

I was using the word normal to mean all people who aren't doctors or who don't have strong ties to the healthcare field. :)

And, of course, I paged the gi fellow during the day, and I was appologetic and certainly not demanding.

Since you bring it up, I do sort of do the same thing for other people. I'll go as far as to do random early dating ultrasounds and random ultrasounds for pictures for sort of professional courtesy reasons.

Don't go on strike. That would make everybody sad. I like your novel. I think that probably more people are reading it than you think. :)

Gerbil said...

I've always found it frustrating to try to advocate for myself re: medical care. Although I have no medical training, I absorb information very quickly--and tend to have the same (relatively minor) health issues over and over and over again. Two cases stand out in my mind:

1) 99.44% of my colds turn into either a sinus infection or bronchitis. Having dealt with this since toddlerhood, I can self-diagnose both quite easily and with pretty durn good accuracy, but obviously I need someone else to write the prescription.

I was in another state over Christmas this past year, got a terrific sinus infection, and took it straight to urgent care. The MD, however, was more interested in my allergies than my rather obvious sinus infection. I informed him that I would see my allergist in California the next week and would he please just take care of the bright green snot in my face so I could fly home to see her... but it took about 10 minutes of escalating "advocacy" before he finally relented (and handed over the amoxycillin script).

2) I went briefly to a PT last summer for neck problems. I lost most of my faith in her when she advised me to cancel appointments when I had a spasm. I lost the rest when I asked her to review my treatment plan with me. She would do no such thing; so I asked what her goals for my treatment were. "To give you some exercises," she said. I said that wasn't a goal, but a method. Then she asked what I meant by "treatment goal." Needless to say, I never went back.

NeoNurseChic said...

Ooooh - I really want to comment on this, but I know it would take me too long, and if I get into writing about it right now, then my mind will be "on" and it will be hard for me to go to sleep! I worked 7a-9p today (the last 2 hours aren't paid, but I'm going to try to get them paid for - that's how crazy busy my day was!), and I work 7-7 tomorrow and Sunday, too! So I have to go to bed....but anyway, wanted to express my intent to comment!

Recently, I was going to do a blog series on helpful tips for patients - such as ways to organize your health information to go to a new doctor, questions to be sure you ask, and other types of things like this. Your post here is inspiring me to work on that! Maybe that'll be something I'll blog about on the "I'm a Blogaholic" new blog that Dr. A started so nicely for all of us! :)

On the self-advocacy front - if it wasn't for being a self-advocate, I probably would have faced death a few times! For instance, the time when I was on an MAOI (parnate) for headache, and the nurse brought in this pill and said I had to take it. Normally, during the first 3 days or so of my headache hospital stays, I'm totally a zombie.....and if I had been in the state that I always am at the beginning of those stays, I might have simply taken that pill. So the reason I still share this story is because I worry about the people who would have just taken the pill without question.

I questioned what the pill was - and she said nortriptyline. I said that I'm not on that med; that I used to be on it, and that I cannot take that med while on parnate. She insisted that I was supposed to take this med, and that the doctor had ordered it for me. I again persisted in saying that I can't have it and even explained the med interaction between MAOIs and TCAs, but she kept arguing with me on it... She was actually a graduate nurse - orienting with an RN, but the RN wasn't in the room at the time. Because she was a GN, she should have actually been even more on the ball of knowing that when a patient questions a med (especially if they say they don't take that med), she should have said ok and gone back out to the desk to look into it further - by rechecking the med list, calling the pharmacy to verify, calling the doctor - instead of arguing with me! GNs haven't been practicing long enough to have relaxed their guard.

So finally, I told her that if she wanted me to take the med, then she'd better go get the crash cart (I might have been over-dramatizing a bit - but I was trying to make a point!!) because the meds can cause a fatal interaction. She finally left and looked into it. Turns out, when the headache center sent a summary of my records to the hospital, they either still had nortriptyline listed as a current med or something along those lines. I had come off of nortriptyline in order to go on parnate - but this was somehow overlooked, and the doctor most likely ordered both meds without realizing what he was doing. What shocked me was that this was put in by the doctor, then verified and approved by the pharmacy, then reviewed and pulled by the nurse - and all of this happened so that both of these pills reached me, the sick patient, who somehow was thinking clearly enough not to just pop the pill they handed me - and may have saved my own life!

I later asked the RN supervising the GN to come into my room - I knew the RN from previous hospital stays. I told her that I didn't want to get the GN in trouble, but I wanted her to know what had happened - especially since I would hate to see this happen to someone else! The GN needed to learn 3 things: 1. The interaction between MAOIs and Tricyclic Antidepressants. 2. Always tell the patient the name of the med you are bringing into them (even if you know this will bring a barrage of questions and frankly, you really don't have time to answer all of these questions and just want the patient to take the pill so you can continue your work!). 3. If a patient tells you that they don't take that med (or questions it in some other way), tell them that you'll check into it (even if you are certain that the patient just *thinks* they don't take the med because you are calling it by a different name than the brand name they are familiar with - think of all the different names for metoprolol, for example), and then ACTUALLY check into it.

I have so much more where this came from - and I said I was going to save this for another day so that I wouldn't be up late, but here I am writing you a novella! I think you've officially inspired me to write those blog posts that I'd started on tips for patients! You say in the post, "So in a vague way: How to Be a Patient." I truly feel that I am very qualified to give tips on how to be a patient - for better or worse! (Seriously....I wish I didn't know how to be a patient!! But since I do, I might as well spread the wealth! ha...)

Gotta go to bed - so that I can do my very best to be a good nurse tomorrow and continue to uphold the high standards I hold for myself - thanks to being a patient and seeing just how many mistakes actually can happen...even if you are paying attention. I once listed all the med errors (and near misses) that I, personally, knew had happened to me over the course of about 4 years because one of my nursing professors was really into researching med errors and how to fix the system...(afterall, the majority of med errors are due to a broken system - not an incompetent nurse, doctor, or pharmacist....even the most competent of nurses, etc can make a med error)...and when I handed her half a page of known med errors (and near misses) that had occurred to just me, one single patient, I said to her, "And these are just the errors/near misses that I KNOW about!" A few of them were so shocking that I still don't know how I'm alive today!

Take care! Sorry again for the length!
Carrie :)

Turbo said...

Just another angle to think about-- the rapidity with which you get tests and other referal medical care may have a lot to do with the "pull" and influence of your doctor. This was one thing which shocked me when I was in med school, and continues to trouble me today. It's not always an egalitarian, first-come-first-served system out there. If your internist plays golf with the radiologist, or your OB delivered the endocrinologist's baby, you can probably be seen that day. On the other hand, if your PCP has developed a reputation for unecessary referals, or is considered somewhat incompetent, or is disliked in any number of ways, you may get rather unspecial status in the que.

Also, as a med student, I was once criticized in a clerkship evaluation for being "insufficiently aggressive." You would think "aggression" is not a desirable trait in a physician-- but the fact is, this characteristic is essential in ensuring that YOUR patients get the best possible care. It's a bit of a relic, I'd say, of the male-dominated world of medicine.