On Being A Patient

In response to my recent post on being mauled by the PA at my annual gyn exam, reader Danimal was moved by my saying this

I say if it hurts, you should feel free to yelp. And no doctor or PA should be shushing you. I am ashamed to say that when my PA shushed me, I let her make me feel embarrassed, and I actually apologized to her. That is just messed up.

to comment thusly:

You disappoint me Zuska. On the bloggesphere you have no problem barfing over someones shoes, usually when appropriate, including mine. Yet here it was entirely appropriate, yet you did not. Come on, you can do better.

This prompts me to make some observations about what it's like to be a patient, specifically a female patient, observations garnered by someone who has spent a great deal of time in the past six years in and out of a depressingly large number of doctors' offices.

In the most recent instance, I was lying on my back, naked except for the fiction of a thin paper gown that didn't close in the front and another paper sheet draped across my mid-section. My feet were in the infamous stirrups, legs spread wide, a position not calculated to create a feeling of ease, elegance, and confidence in one's self.

There are many women who are survivors of sexual abuse for whom a routine gynecological exam is a real nightmare. The position on the table, the touching that the health care provider is required to do, all can trigger frightening flashbacks. Managing that reaction may take so much of one's strength and fortitude that little is left for other concerns. This is why I always recommend that sexual abuse survivors share their history upfront with their health care providers, so that they can be extra-sensitive during exams. A helpful technique is to ask your examiner to go slowly and tell you explicitly everything they are going to do just prior to doing it - you don't want any surprises. You want time to think and manage the reaction. If your doctor won't go along with this and/or isn't putting you at ease - get a new doctor.

Anyway, there I was, naked and in the stirrups. It's not like I was wearing a suit, sitting across a table from someone in a conference room, feeling at the height of my powers. Believe me, nobody every jacks me around in a setting like that.

But beyond that - there's something that happens to you when you enter a doctor's examining room. Particularly if you have been, as I have, chronically ill for many years, you come to see yourself as in a dependent relationship with your health care providers. You need them to help manage your illness and make you feel better. You want them, dear Jesus, to help you. You want to believe that they know what they are doing.

This is so even if, as I have, you have acted as an advocate for another family member in their relationship with health care providers and know that it is not in your best interests to be passive or always assume that Doctor Knows Best or to not trust your instincts. That's why patients need advocates - because they find it so very hard to advocate for themselves.

I would never in a million years let a health care provider treat my mother the way that physician's assistant treated me this past week. I would have said something right then and there and a formal complaint would have been filed before I left the office that day. I push doctors and office managers all the time in regard to my mother's care. But I have found it extremely difficult to bring that same attitude to managing my own care, and Mr. Zuska has had to step up to the plate and do it for me. It's extremely frustrating to him because he knows I know more about the health care system than he does, and he sees my aggressiveness on behalf of my mother - where does it all go when it's time to care for me?

Patients want to be told they are healthy and/or they want to be healed. They don't want to argue and have conflict with their health care providers. They want them to be competent and right and kind, and we will sometimes go on desperately trying to convince ourselves that they are so even in the face of overwhelming evidence against it. For many years my mother saw a primary care physician who was rude and brusque with her, who repeatedly harassed her about her children's advocacy efforts on her behalf, and who ultimately, one day, refused to see her anymore because he said coordinating her care with her other physicians had become too difficult. (She will not go to the hospital where he has privileges because it is the same hospital where my brother was left severely brain-damaged by a botched surgery at age 17. It is more work, but not impossible, to communicate with the doctors who are on staff at the other hospital.) After all this, my mother still tells me frequently that she would like to go back to this physician because she feels "comfortable" with him.

This story highlights a fear that patients with chronic illnesses have - that we will be rejected by our doctors if we become too much trouble to them. We don't want to annoy them by being whiny, complaining too much, acting like things hurt a lot - why, we hate to even bother them with us being sick! Because we know it is annoying to them that they cannot cure us. In my mother's case, her PCP was actually worried that the difficulty in coordinating with the other physicians was going to compromise my mother's care. I thought we just needed to introduce some better procedures for making sure the right information got communicated in a timely fashion. He thought she needed a different doctor. My mother ended up feeling hurt and rejected. As irrational as I know it is, in the back of my mind, my mother's experience speaks to me of the dangers of being a complex patient who needs too much from her doctor: your doctor will throw you to the curb.

On top of all this complex behavior that patient status brings out in one, there is the problem of having been raised female. Be polite, do not complain, don't make a fuss, don't inconvenience anyone, be quick to apologize, try to minimize conflict and maintain relationships, remember that whatever it is, is most likely your fault, and if not, why not just take the blame anyway so as to make things more pleasant for everyone? It's a toxic blend. So when a health care provider treats you poorly, you are just as likely to conclude that you did something wrong as you are to realize that she or he has been an asshat.

It takes a great deal of training and conscious effort to overcome that perspective; you have to be consciously ever-vigilant. Yet if you are preoccupied with thoughts like "I hope they don't discover anything troublesome like last time I was in here" or "this exam makes me want to puke, I wish I'd just canceled my appointment" or "it's freezing cold in here and I wish I'd kept my socks on", concentration can be elusive.

I won't even get into the whole shame thing about our bodies, how we are taught to feel bad about every single aspect of them, how the unavoidable weigh-in that starts the exam, with the nurse loudly reading off your weight in a chipper voice as she makes a note in your chart makes you want to disappear, how you have anxiety about your physical appearance and possible unpleasant body odors as you lie there naked with legs spread wide...

So, yes, I'm sure I could have done better. Lord knows I wish I had, for my own sake. But I have to tell you, at the time, I was just damn glad to get the hell out of there.

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I am so sorry that you've had such horrible experiences. I am a Women's Health Nurse Practitioner. I do my best to help my patients feel relaxed and as comfortable as possible. I tell ALL of them what I'm going to do before I do it. If someone hollers in pain, I stop what I'm doing to regroup. Pain is usually a sign that something is wrong! If I must continue with the exam, I apologize for causing pain, and continue with great explanation and gentleness. There is NO excuse for less.

My first "gyno" experience was as a 15 y.o. virgin in 1975, before ultrasounds. I had pain in my lower abdomen, pretty sudden onset, and was taken to the ER. OB/GYN on call was rude, harried, and just plain mean. He did the pelvic exam, found what was hurting, and I yelled. It was instinct! He snapped, "Let go of your mother's hand and quit acting like a baby!" To a virgin. After 5 days and much more pain, he admitted me for a laparoscopy and found a tumor in my left tube the size of a small grapefruit. I will NEVER forget how he made me feel, and my patients will NEVER get that from me!

Keep looking for someone with more understanding. And I can perhaps make you feel a little better by saying that we don't care about smells (sometimes, they can help with diagnosis!), we don't care about body look or size, except that it impacts your health. We don't care if you didn't shave or have time to go home for a shower first. We just want to take care of you.

Best of luck,

Cindy

Thank you, Zuska.

This is a perspective I've never seen described [1] and sometimes run into people this would help. May I hand out copies offline?

[1] OK, I've lived a sheltered life.

By D. C. Sessions (not verified) on 22 May 2009 #permalink

Certainly, feel free to share copies with anyone you think might be interested. Just please be sure to give attribution (name and link, please).

Just please be sure to give attribution (name and link, please).

Always. Also, since I forgot to ask the first time: would it be all right to translate into Spanish? I'm not at all sure that the translator could capture the tone, but every now and then we have a patient who needs, very badly, to be reassured -- and even if you weren't meaning to I think this would be very reassuring to someone vulnerable and in a strange land.

By D. C. Sessions (not verified) on 22 May 2009 #permalink

Thank you for this one. This needs to get out there. I've tweeted it.

Dear Zuska,

Thanks for sharing! My wife is the usual pit bull and would be the first to barf on someones shoes if they made her uncomfortable. Again, you barfed on my shoes, and rightly so. Good going, that is what I expect from you. I am sincerely sorry for making light of your predicament. Respectfully yours,

The Animal,

Danimal

An MD and a humor writer, I have spent the last few months researching my new series, "The Nefarious History of Motherhood." The more I read, the more I shake my head.

Of course, women in societies that subjugated them had to put up with whatever the male medical professionals decided.

But sometime in the middle of the 20th century, at the same time that we were fighting for our place, we (women, that is) simply subrogated ourselves and our rights to an increasingly mechanistic medical establishment that sought to control every aspect of our physical lives.

AND WE LET THEM.

It's a fascinating study in psychology. Feminist authors are STILL trying to figure it out.

Just please be sure to give attribution (name and link, please).

Always. Also, since I forgot to ask the first time: would it be all right to translate into Spanish? I'm not at all sure that the translator could capture the tone, but every now and then we have a patient who needs, very badly, to be reassured -- and even if you weren't meaning to I think this would be very reassuring to someone vulnerable and in a strange land.

By D. C. Sessions (not verified) on 22 May 2009 #permalink

Zuska,

You are currently hosed. The wrong comments are showing up for the wrong posts. ScienceBlogs was kind of screwy all day. Perhaps, there is a greater problem? This is response to your "Comment Problems?" post. But I see comments here that belong to your "Shush!" post. None of my earlier comments appear anymore. I thought you had deleted them because I may have pissed you off.

Had some screwy settings on my blog software, I think it's fixed now. No, I almost never ever delete anyone's comments unless they are really over the top racist/homophobic/violently sexist type stuff. In general I believe in a free for all discussion and letting everyone see what other people are thinking and saying.

reason #46573 for free healthcare! I can't stand having limited choices in PCPs. Obgyns should be freely available to all women. One thing I really hate about moving and switching jobs is switching doctors all over again. It takes forever for me to get comfortable with a doctor in the first place, and each time I've moved for grad school and postdoc, I had to go about finding and re-establishing new doctor relationships. I was manhandled by a d00d a few years ago, what an awful experience and it takes everything I have to not think about it when putting on the wrapping paper.

This post will help soooo many women.

hi Zuska,

what if clinical interactions could be routinely taped and reviewed at the request of either party?

this would allow a patient to show a doctor what parts of an interaction she found uncomfortable (and why) and a doctor to show what parts of her work are hard (and thus need some active cooperation from the patient)

this is tip I picked up from

http://www.sfwa.org/members/elgin/

who once pointed out to me that (verbal) rudeness is like bad breath: those who have it don't always know and need to be shown exactly what it looks like from the outside.

By Stefano Bertolo (not verified) on 22 May 2009 #permalink

I realise this was only an example and not the main point, but it's worth knowing that in the UK stirrups are very rarely used for gynaecological exams. They're just not necessary - doctors here are trained to examine women in the dorsal or left lateral positions instead. It's much much less humiliating. I wonder why US physicians can't learn this too?

http://www.bmj.com/cgi/content/full/333/7560/171?rss

What Hilary said applies here in Australia too. I've never even seen stirrups used except in a setting where the patient would be unable to hold their legs up/apart, such as surgery or patients with disabilities. They don't generally even get you to undress; just remove underpants -- so if you're wearing a skirt you can remain relatively comfortable.

Given the stories I've heard from American friends, I really wonder why they have to go through all that discomfort (or worse) when it's plainly unnecessary.

Stefano, I know you mean well, but think about what you just suggested for a minute. You suggest taking a setup that is already humiliating, potentially triggering, and sensitive for a patient, and taping it. And having her know it's being taped. So that it can be watched over and over if necessary. Really, no.

good point Carlie. the thought behind this was not explained well. naturally, it would be bad to cause a person to re-live something she experienced as negative. the alternative I was exploring was that between a lifetime of negative experiences (as would happen in a string of encounters with an unreformed doctor) vs a first negative experience (visit number one) followed by a second potentially negative experience (an interview between the patient and the doctor in which the patient uses some objective evidence to explain exactly what was wrong and the doctor uses the same evidence to explain exactly what was hard) hopefully/potentially followed by a lifetime of less negative experiences. the taping may very well be an unnecessary implementation detail, to the extent that doctor and patient are able to objectively look at negative experience number one by other means. the point of the objective point of view (which could be offered by a tape but potentially by other less intrusive mechanisms) is that people in stressful situation often experience (and remember) things very very differently. so what you would have is a tradeoff: the person who finds the taping as humiliating as the visit itself and sees no benefit in it would and should recuse the opportunity. The person who has confidence that the tape (however humiliating) could be a stepping stone towards a better experience at the doctor's could take advantage of the opportunity. Since, in this setting, nobody would be worse off and some would be better off, the proposal seems to be Pareto optimal.

By Stefano Bertolo (not verified) on 23 May 2009 #permalink

the analysis in the previous post looks at the case where the doctor *can* be reformed. of course this cannot be generally assumed. it is also lopsided in that it assumes that it is the patient who has to trade off some of her privacy/comfort in order to secure better future service. there are many situations in which a far better trade would be trading the current doctor for a new one who is reputed to have better bedside manners (or use better techniques available elsewhere in the world, as explained in other posts). it would then be incumbent on the discarded doctor to reform their ways or get out of business.

By Stefano Bertolo (not verified) on 23 May 2009 #permalink

Here in Germany, there are no paper gowns or covers of any sort: we are expected to remove our pants and underwear and walk out into an open room then toss our legs into stirrups and lie exposed to strangers. It's horrible. My ob/gyn now hands me a napkin that I find oddly helpful.

And of course, if med schools placed more emphasis on bedside manner, it might be headed off more often before it starts. It's not just a question of the patient feeling squicky; they clam up and don't tell the physician things that might be important to a diagnosis. Or, if they do, some physicians with bad interaction skills miss it. It seems like medical practice can get more dehumanizing the longer a person is in it as it becomes routine for them. I'd love for a condition of licensing to be requiring a refresher course in current practices/research/etc. every 10 years or so.

On top of all this complex behavior that patient status brings out in one, there is the problem of having been raised female. Be polite, do not complain, don't make a fuss, don't inconvenience anyone, be quick to apologize, try to minimize conflict and maintain relationships,

I think that there may be some cultural/ethnic differences here of some importance. While this is undoubtedly true for many women, certain women, perhaps in certain ethnicities or economic groups, have no difficulty being very assertive with their doctors.

Of course, it's still easy for the doctor to "turn on them", given the imbalance of power in the relationship (although in a small community, a word from the right person can kill a doctors career).

This is a really great post Zuska!! I'm glad Danimal's well-intentioned, but insensitive comment prompted such a fantastic write-up!

Comparing and contrasting all of the above, it occurs to me to wonder how "siloed" we all are WRT our experiences with medical care. How much of the power difference that PalMD cites is similar to the power difference that employers have over employees due to "divide and conquer?"

How many of the other patients do we even know? Outside of small towns (and perhaps pediatric practice), do we even want to? Yet this has consequences.

By D. C. Sessions (not verified) on 24 May 2009 #permalink

Stefano, regardless of whether your analysis reveals your idea to be Pareto optimal, it is based upon a false premise: the idea that there is an 'objective experience' to be reviewed from an 'objective' point of view. In particular, pain is a subjective experience. The only sure way to determine whether someone else is experiencing pain is to ask.

This idea of an objective experience or point of view is part of the problem with doctors' relationships to patients. For example, if a doctor and patient were reviewing the video of an exam, and the patient said, "There, that's what you did that hurt," many doctors I have known would say something like, "But that shouldn't have hurt." These doctors are so wrapped up in the scientific/medical reasoning process that they neglect the humanity of their patients. While it may be true that the idealized objectively-viewed imaginary patient from medical school would not have been hurt, it's irrelevant to the person who experienced pain. The response I would want is for the doctor to say, "I'm sorry; I didn't expect that to hurt you, and I'll be more careful," while at the same time thinking about why it hurt and what that indicates about what's wrong. Be human to me at the same time that you use reasoning to help me, but don't get your logical reasoning confused with my lived experience of pain.

Echopath, you are right about the subjective quality of the experience of pain and for taking me to task on my use of the word objective.

instead of writing 'objective record' I should have written something like 'a record that could be jointly reviewed so as to reveal aspects of the interaction that are important to at least one of the parties and were not shared by both parties at the time the interaction took place'. I accept that such a record may not be completely objective or complete.

what is important for the point I was trying to make is that it could be used as a communication tool to elicit exactly the response you write you would want from a doctor.

it could be a tool that could give a doctor a second chance to ask (a process that you review as appropriate to determine if someone else is experiencing pain) and a patient a second chance to tell (another process that can be helpful to bring one's lived experience of pain to the attention of someone else).

some doctors you have known might not take advantage of this chance. some other might. in the first case the situation remains as it is today. in the second case you have a net gain. so, all in all, nobody would loose and some would gain.

By Stefano Bertolo (not verified) on 24 May 2009 #permalink

Zuska, you are right on the money again.

I had a horrible experience with one of the OB/GYNs in a practice, and a not-so-great experience with another, yet I still go there. The horrible experience was post-partum, about six weeks after my son was born. I wasn't really with it enough at that time to defend myself (and of course, not expecting to need to defend myself). I had some vascular scar tissue from the birth, that he twisted and pulled off of me and then cauderized the area. It hurt worse than the birth!! Then, he gave me a prescription for something that would numb it. Somehow I managed to stagger out of there and get myself home.

I had more of the scar tissue and the second time, I purposefully went back to him because I wanted him to know how much pain he'd caused me. "If you do that to me again, I promise to twist and pull off a corresponding piece of your anatomy," I told him. He used a local anesthetic that time.

The not-so-good experience was from another doctor who thinks it's opposite day every day, or something. He can't seem to listen and in fact tends to hear the exact opposite of what you say.

Now, I only go to a woman doctor in that practice who I do like. But if I have another baby, I will use a different practice -- unfortunately it will be at a hospital at least 15 miles away instead of right here in town. The problem is that you just get whoever's on call when your baby is born, and since I fear one of the doctors and strongly dislike another, that gives me very low chances of having a good doctor for the birth.

I hope I've never made any of my patients feel that way.

My med school was very fortunate to have a group of women who decided bad gyne exams should be a thing of the past, and volunteered to have the class do their first gyne exams on them (in small groups of three or four).

Now, I found this exceedingly weird: imagine having four speculum exams in a row, by inept medical students to boot.

However, I did find it very helpful. They were very open and honest, telling us where to touch and not (to one guy: that's fine, but TAKE YOUR THUMB OFF MY CLITORIS), and what to say and not. I'll never forget them.

Wow Zuska, you just described the kind of experiences my wife has to a T. She is one of those "complex" patients with a combination of various physical issues coupled with a severe depression disorder. She sees at least 2 or 3 doctors a month on top of her three times a week psych therapy. I can understand exactly what you experience because I see my wife experience the same kind of crap - right down to the anxieties about her body appearance, etc. She does have some very good doctors who are gentle, sensitive, and treat her with respect, as if she is an actual intelligent, functioning, human being. But, there have been those who do not. I see her hurt when that happens. It sucks. I do my best to comfort her and assure her she has done nothing wrong, that standing up for herself and demanding proper treatment is the correct thing to do.

I don't know what else to say. I get it. It is tough sometimes. I'm really sorry you have to go through this kind of shit.

Dear Zuska,
I can't thank you enough for this post, and for some of the comments I've read here. I was amazed and moved to find an experience I thought was mine alone captured so completely and eloquently...

I am also a sufferer of a chronic illness, and a survivor of childhood sexual abuse (you don't say explicitly whether that is your history as well but I'm assuming it is - I'm a newcomer to your blog and apologize if this is ground you've already covered or if I'm making an incorrect assumption). I am also a professional woman of some repute and like to think of myself as fairly ass-kicking in the part of my life I spend outside a doctor's office; it has been confusing and dismaying to me how quickly I revert to the terror and vulnerability that you described when I'm 'on the table'.

I appreciate your insights and your suggestions, but mostly I appreciate your courage in writing about what I know well is an extremely difficult issue... thank you very much!

Zuska (and everyone else)

Three years ago I was getting a mammogram/ultrasound at a local hospital. The radiologist, sadly a woman, came in to the darkened room where I was undressed with the glop still on my breasts and told me I needed biopsies on both breasts and handed me a piece of paper with checkmarks and the name and telephone number of a general surgeon. I asked if she could wait until I was dressed to speak; she said no. I asked if there were any other options like another mammogram in three months- she said "No; it may be cancer" and then left the room before I could ask any more questions, like where to get a second opinion.

I got out of there and fell apart in the parking lot, calling Tom on the cell, crying my eyes out-- hey you all know the drill.

When I got home and stopped crying; Tom and I called a physician friend, who it turns out is friends with the guy who wrote a major textbook on reviewing mammograms. No need for any biopsies, (although just in case he did make me go in for mammograms every six months for two years).

As a result Tom and I decided that even if it is "just routine" we go to all medical things together.

But I kept thinking about that damn radiologist and how if I hadn't had the connections and options I have; I would have had not one, but two unnecessary biopsies (and by a general surgeon- not even an oncological surgeon). So Tom and I spoke to my primary care physician (a lovely 80+ year old who puts oven mitts on the stirrups and warms the speculum) and he said he would speak to the radiologist. I also wrote a letter to the head of radiology at that hospital detailing the whole thing.

I got a letter back from the head of radiology apologizing and saying that he had called the radiologist into his office and told her that this was not acceptable behavior and would not be tolerated. He also asked me to come back there for future mammograms and while I would do that only after hell had frozen over twice; I'm hoping that we've reduced the chances that she will do that to someone else.

So you may want to think about following up on this --decent health care providers really do want to know

Amen! I have a rare heart condition so I've spent a lot of time half-naked in front of doctors and technicians. Unfortunately, for certain tests, the gown has to open in the front and I have to be bra-less. Being a bit top-heavy, I often have to move a breast out of the way for the proper placement of the electrodes. I had one tech who, without asking or warning me, just reached out and moved my breast to remove an electrode.

I'm usually a huge hard-ass myself but as a survivor, sitting half-naked in front of strange men doesn't exactly put me at ease. Having someone reach out and grab my breast unexpectedly was not exactly a pleasant experience.

Often, I find myself clamming up. I had to sit there while one cardiologist started lecturing me on how I couldn't have a heart condition because I'd have symptom X during activity instead of at rest. My condition is DEFINED by having symptom X AT REST. I was so uncomfortable from the nudity that I couldn't say anything and thought I was going to cry from frustration. As soon as he left the room, I got dressed and stormed out of the office. I've never been back and am still having trouble finding a good cardiologist.

reading these recits-vecus makes me puke ...in my culture humiliation requires a quest for vendication...saving face, some call it. Providers who cross the line must be dealt with.
Saying "no" can save a lot of grief but the lack of a refusal does not entail giving up the right to future revenge. My worst personal experience was at the draft center during Nixon's (he owned it then) Vietnam war...The ritualized humiliation of that event made me unable to respect the medical profession or a society which does not execute physicians who humiliate anyone.
The corpsmen should only be sentenced to Stalinist re-education camps. Violence, though denied to opressed classes bY AMERIKAN law is a gold standard for regaining ones dignity; provided one performs ablutions after the initial contamination by the guilty doctor.

I've never understood why American, Canadian and German women feel the need to have annual gyn exams when they have no symptoms. I'd never agree to them.
This exam is at the top end of distressing and invasive exams and should only be done when absolutely necessary.
The clinical evidence is clear: they are of low to poor clinical value in an asymptomatic woman and expose you to risk. (more investigative procedures, even surgery)
Routine breast exams - they don't bring down the death rate, BUT they cause unnecessary biopsies and some believe biopsies are a risk factor for cancer.
Pap smears are a cancer screening test with risks and benefits - informed consent is a legal requirement for all cancer screening. Screening under 25 is of no benefit, but causes great harm through false positives and harmful over-treatment - it is unsafe and unreliable.
Screening should be considered having regard to risks v benefits and your risk profile - my risk of cervical cancer was near zero, and I was not prepared to accept the high risk of a false positive and harmful over-treatment like LEEP or conization.
The more often you screen, the higher the risk of unnecessary and harmful procedures.
The lowest cervical cancer rates in the world - Finland - they offer screening to sexually active women 5 yearly from 30 - 5 to 7 tests in total - they also send the fewest women for colposcopy/ biopsies.(the fewest false positives)
Annual and biannual screening causes lots of false positives and harmful over-treatment.
I'm 52 and have never had any sort of gyn exam, I'm a healthy woman and only permit evidence-based exams. If something is more likely to harm me, I'll pass.
More women need to do their reading and take charge of their medical care, healthy women don't need these gyn checks and they are very likely to harm you.
Smears should only be permitted after you have made an informed decision about risks v benefits. (and don't let your Dr decide as most have a conflict of interest)
See: Dr Joel Sherman's Medical Privacy blog under Women's privacy concerns.