Additions late 5/30/11: First, once again the comment discussion has colored some people’s view, including mine, of this discussion. That’s good. Second, in response to comments, I made a couple of edits, striking through the old text, and tonight I discovered the strike-throughs didn’t take. I’ve fixed that, but I apologize for any confusion. Anyway, please do read the comments!
The following is my opinion, not the Society’s, and asks for your opinion, especially if you’re a member of the Society. (It only costs $30 to join, but as always, everyone’s welcome to discuss here.)
Participatory medicine is a two way street. You don’t get to be a passive lump and call yourself an empowered, engaged patient.
Last week CNN’s “Empowered Patient” correspondent Elizabeth Cohen posted something about this that popped up tonight in social media: 10 Dumb Things You Do at the Doctor’s Office. It generated a bit of disagreement on Twitter tonight. What do you think? Here’s what happened.
First, our Society’s social media team noted it on our Facebook page, and tweeted it, with this lead-in from the article:
”I know many of you are programmed not to question your doctor, but we can’t read your mind, so we need you to…”
It came up during tonight’s #hcsm, and someone said the article made good points but was “framed and titled disrespectfully” to patients. Well, let’s discuss.
First, here are a few of the ten “dumb” things. For the rest, go to the whole article:
1. You talk on your cell phone.
This is your health we’re talking about. Other calls can wait. Turn the thing off.
My opinion? Yeah,
you’re being it’s dumb (and rude) if you consume your doctor’s precious face time (or butt time) with a phone call. Dumb. And if you think that’s disrespectful of me, okay, I think you’re being dumb. that’s dumb too.:) This is healthcare! Partner with your clinicians! Be involved, not timeslicing!
2. You lie.
“I need to treat you the best way I can, so if you’re gay, tell me. If you drink a bottle of tequila every night, I need to know… I won’t judge.”
I’m no expert, but in my travels I’ve heard from many doctors and nurses things like “Then we find out he …..” Really, people, it’s dumb if you don’t tell your care team things they need to know! Be responsible for your side of the communication!
6. You don’t know what medications you’re taking.
“Patients should bring a list of medications they’re actually taking, not what they believe they are supposed to be taking, or what they think I want them to take…”
Right. And I was recently guilty of this – when I visited my primary, Dr. Sands, I knew that in addition to my one blood pressure pill, I was taking several supplements, but I didn’t know the specifics. So I went home and sent him the specifics. But really, it was sloppy, lazy, and a little bit irresponsible of me not to know – and I’m willing to say yeah, that was dumb.
After all, how many times have you heard “Bring a list of your current medications?” Perhaps not enough.
Perhaps your Society should develop an e-patient checklist – and if we do, I think it should include all 10 of these items.
Update June 3: See our follow-up post, about Sue Woods’s terrific take on what she would say on the 10 dumb things.
Would you like to join our social media team? We’re always open to people who “get it” about social media, and who actually have bandwidth to commit to the team: occasional meeting calls, regular “socmed” duties, etc. Write to volunteers at participatorymedicine.org.
I happen to agree with Dave’s points as well as his tone, and with the original author of the story, as I tweeted earlier this evening. “Health Literacy Education” will be key going forward in the 21st century.
btw, having said this, I emphasize – I respect the viewpoint that felt it was disrespectful! Plenty of room for points of view; we’re making this up as we go along.
I’d like to hear more…
On one hand, I can see why some people thought it was disrespectful. There was something about the tone that made me feel like the writer didn’t care… some of the mistakes were quite obvious, but others might not be to people who haven’t had much experience with doctors. If you are sick and thrown into seeing specialists with all the new treatments and possible pain (and fear) that goes with a new diagnosis…. you can get absent minded… I don’t think making people feel dumb is the way to health literacy.
With that being said, I’m in the trenches with patients every day, and I am surprised how little they know about being an advocate for themselves. If I had a penny for every time I’ve reassured a patient that getting a copy of their own medical records was okay (and actually encouraged), I’d be rich.
The bottom line is that many patients don’t have a baseline of knowledge where we can assume they know all of this. They don’t know….and really don’t need to feel dumb about it. They need to be reassured that their healthcare providers are there for them and that any question is worth asking.
Thanks, Stacy! Great points, great observation, and you raise an important point:
In any performance improvement talk, it’s vital to separate the deed from the person.
Cohen wrote about dumb THINGS you do.
But uh-oh… I wrote “You’re being dumb.” Bad move.
So I’m going to strike through what I said, and improve it.
The analogy to a job performance discussion leads to another parallel:
Nothing can be called a performance error if the correct performance wasn’t defined in the first place.
Which leads to my point that maybe we should develop a list of shoulds and shouldn’ts for being an empowered, engaged patient.
Good points. I definitely think we should develop a list. I’m up for it!
On Twitter, @ComalliWrites (Kathleen Dillon) said:
“agree w stacy- interesting xx/xy divide on tone”
and, re “it’s the deed that’s dumb, not the person”:
“To which I say I don’t appreciate my actions being characterized as dumb. Off-putting title/frame of reference.”
Privately she added that it was really the title, not the content, that kept her from sharing it with others.
While I agree, patients must speak up, hang up the phone, and be a more active partner in their health – I find it dumb that there is no mention of how stupid it is for docs to expect all patients (including the senior citizen used to a life time of a paternal pt-doc relationship) to mention al concerns after having waited 45 minutes to an hour in the waiting room, has a physician who answers their own questions, and rushes patients through the exam. Is it dumb to expect clinciians to remember to slow down and wait for an answer? Better to run behind then to have to take time off for depositions, etc!
Brilliant reply, Mary Ellen!
I wonder if we can hear from the docs Cohen interviewed. I suspect they may not like it when colleagues do as you describe.
If we do create an “e-patient primer” it seems one of the basics will be how to stick up for yourself in cases where the system pressures doctors to get rid of you.
“The system,” of course, is today’s insurance-dominated environment, where nobody but them gets to define the rules.
That was an annoying read.
Stating expectations is code for tell your doctor what you want. I have yet to meet a doctor who truly wants me to tell them what I want.
Also, no doctor I’ve ever met likes pieces of paper from patients. A pain diary? Would be summarily ignored. I’m tired of mainstream media acting like if we just used a snazzy chart, it would fix all the problems patients have in the medical system.
The problems are bigger than a symptom chart.
Also, I’m not too scared to disagree with my doctor. The doctors are too egocentric to care about my opinion. The article misses the root cause. Patients are quiet because doctors don’t listen so why argue?
Ultimately, the physician holds all the power and much of the knowledge and thus bears greater responsibility for the relationship. Stop lecturing the patients, start pushing the doctors to do better.
Wow, PO’d, thanks! Great comment.
So: I’ve had docs like that, and I did what I could to get rid of them and find one I liked. (I’m nnot saying it was easy.) Are you in a situation where it’s not possible to move to another?
Thanks for speaking up.
The internet ate my comment! Trying again…
Basically, it appears that every physician on the planet skipped the lecture and the test on adrenal glands. I was premed for a while (to figure out my diagnosis) and have read all the same texts and studies etc… The doctors never mirror the literature in their conversations with me. The dearth of a common thread between their care and accepted science is scary.
But adrenals are rare, so I guess that makes it okay to not know anything about them.
Don’t be medically unique, that will get you killed.
I’m on my third specialist who has managed to ignore my blood work, thereby flubbing the diagnosis. They do at least prescribe the right meds and have even agreed to put in some orders for blood work in case I need them all while denying the diagnosis.
It’s very surreal.
I’ve written about the lack of patient empowerment which touches on some of the issues raised here: http://pissedoffpatient.blogspot.com/2011/02/lost-patient-power-reward-if-found.html
First, the title said “dumb things” – and said nothing about dumb people.
Second – I know Elizabeth, and I know that in a million years she would never intend to offend.
Third – I also write a newspaper column. I send my column to my editor with a title on it, and NEVER, in 5-1/2 years of column writing, have they ever used my title. They make up their own. So it could be that those of you who are offended are upset with the headline writer or the webmaster. (Not worth the energy!)
As empowered patients, we have so very much to learn. Nobody teaches us to be patients and because of that, we are bound to make some dumb mistakes.
Author of (you’ll love this!)
You Bet Your Life!
The 10 Mistakes Every Patient Makes
(How to Fix Them to Get the Health Care You Deserve)
You know, I’ve never been asked about my sexual orientation at the
doctor’s office nor has it ever been on a medical form I’ve had to fill out so telling people it’s dumb if they don’t trust their doctor with that info doesn’t seem very sensitive. Is the doctor just going to assume people are straight until told otherwise? “Don’t ask don’t tell” was repealed but that doesn’t mean doctors don’t have biases and don’t have to earn patient’s trust.
Marcela, I can’t speak for the doctor Cohen quoted, but I think the point of that “gay” item was that we should make the doc aware of any factors that could alter our risk profile.
Having said that, yeah, I think it would have been better if that doc had said “…so if you have a lot of sex partners, tell me.”
I do hope the docs interviewed will come here and engage! :) Great discussion, and higher leverage of all minds’ contributions.
Dr. Lissa Rankin was quoted as follows:
“If the treatment plan I suggest doesn’t resonate with the intuitive wisdom of your Inner Healer, please tell me, instead of ignoring what I suggest.”
this is hilarious, but neither accurately represents nor respects patients’ health beliefs or preferences.
Thanks for posting here, as I suggested on Twitter! Much appreciated.
The reactions to these items are really interesting; they shine a light on how sensitive some of these subjects are. My wife, a veterinarian and a holistic thinker, recognizes both the patient and clinician side of that remark: it drives her bonkers when a patient (actually her client, the “patient’s” owner) nods their head while silently saying “That’s what they want but I don’t agree with that approach.” And as a patient, she WILL express her preferences to her doctors.
Hm, perhaps Dr. Rankin would get better response if she phrased it “please tell me, instead of nodding and then not doing it.”
If we had video of her saying those words, we could see if she was sneering, or exasperated, or smiling warmly, or earnestly being empathetic (e.g. if she’s completely FINE with someone having and valuing an Inner Healer), or what.
Dave, that’s an excellent question, both clinically and for research: how do doctors conceive of their patients’ health beliefs? I don’t know of much that looks at that.
Personally, while I agree with most of the points, I think the “tell your doc everything up front so they can plan the visit” can be ambiguous, sometimes that results in more efficient care, sometimes it results in more money, because they tell you to come back for additional problems. More services, more money.
Which I suppose goes along with Dave’s comments above, if your doc won’t accept documents from you or asks you to come back unnecessarily, then you should probably switch docs.
Although perhaps stated too briefly in the original article, I find that failure to immediately establish the agenda is one of the most common reasons for an unsatisfactory office visit (from both the patient’s and provider’s perspectives), and often can result in increased costs.
Today a single-topic office visit is the exception, rather than the rule. Most people have more than one concern to discuss. Also, the health care provider often intends to ask about the status of past issues or ongoing chronic conditions.
I understand your point that mentioning additional information can open up a can of worms and potentially lead to additional investigation, visits and testing. However, sometimes the extra details are important in an unrecognized way. I find the best approach is to briefly make known any additional items that you have noticed, but to make clear that you prefer not to pursue them further if they do not seem significant.
It may seem absurd to many that a doctor visit need be conducted efficiently, but we all want to make the most of available time.
There are a number of reasons why people tend to wait until very late in an office visit to make known additional concerns. Regardless of the reason, it risks the cost of an extra office visit, should the available time have passed.
I encourage people to list all their concerns up front in an attempt to avoid this conundrum. Also, I recommend that they request extra time when they schedule a visit to address more than one or two concerns.
The comments here are a great illustration of the very problem doctors and patients have — you just don’t know whether what you *mean* to say (however articulately conveyed) is what comes across to the human being at the other end of the conversation.
I brought a typed memo to every one of my son’s doctor’s appointments and I am fortunate to be able to say I don’t recall a single time when the effort was not appreciated.
I’ve put a version of the memo up here:
It’s a form adapted for general use, but based on the system I came up with for communicating with our family’s healthcare providers.
It’s a work in progress, but I believe a good starting point for guiding a patient or caregiver through providing the basic information needed at a doctor’s appointment.
Thanks for sharing this, Elaine!
I do something very similar that I have developed over the years. Basically, I try not to have more than 3 items per visit to discuss (and if there are more than 3, I organize them in order of importance to make sure I get to the most important ones).
Agreed, a good point! I wonder what the docs Elizabeth Cohen interviewed would think.
Do any of you send this information ahead? Or might you, next time?
Thanks Stacy. Your TMJ site is wonderful.
Dave, it was consistently my impression that the doctors did not review my child’s chart until they walked into the exam room. Therefore there was no point in sending it ahead. (I am referring to regular follow-ups. Lab results were reviewed and I’d get a call if there was anything that needed to be addressed)
Thanks, Elaine. I don’t know you, nor your doctors, so I guess that’s that on that point!
If you want, maybe next time you can ASK to send the info ahead … if they say no, or still don’t read it, that’s a whole other level of problem.
I long for – we’re working for – the day when each of us will be able to ditch providers who won’t listen to our wants, just as readily as we can switch grocery stores or gas stations.
Agenda-setting has been touched upon in earlier comments – this is done far too rarely in doctors’ visits, in my experience. Our research bears this out:
Thanks to all who’ve kept this good discussion going while I was occupied today.
Zackary, I agree wholeheartedly about agenda setting. My primary notes (in his speeches) that he likes it when I do that, because not only does it speed up the visit, but HE comes to the visit with an agenda as well, so it empowers him to anticipate and manage the visit content.
Dave, I was trying to reply to your comment above, where you write,
“I long for – we’re working for – the day when each of us will be able to ditch providers who won’t listen to our wants, just as readily as we can switch grocery stores or gas stations.”
I’m all for patient-centeredness but I want to challenge you here. The doctor-patient relationship is different from the grocer-/gas-station-owner-client relationship. Much of the time the doctor has to help the patient achieve change that they would not embark upon, or perhaps even agree to, themselves.
So the freedom to jettison your physician if they do not respect your preferences is of course very important. The question is – under what circumstances would you exercise that freedom, and how soon would you hit the eject button on that doc? I think that some patients might not have agreed with me on the first visit, and our priorities disagreed – they might have thought I was acting against their preference, but in the final analysis, I was helping them achieve what they wanted all along. Only they didn’t know it yet!
First, I’d love to hear from far more people here. I’m only expressing my opinion, and I’m sure there are more points of view.
So, my view: Of course the doctor-patient *relationship* is infinitely different from a gas station. Any gas station can sell me gas; not any doctor could have saved me.
And, over the decades I HAVE ditched doctors when I didn’t like how I was treated. The first lesson was an arrogant plastic surgeon who objected (when I was 28) when I asked if I’d have a scar when he removed a skin cancer. (He then did an unnecessarily harsh procedure, and NEVER came to see me in the hospital – I had to check myself out.)
And the web is full of stories of people whose doctors are not at all caring.
So I’m just saying (and said) that I long for the day when people CAN. But, to answer your question – despite all I’ve said above, at age 61 I’ve only decided to punt a health professional three times. And two of those were dentists.
Dave: You’ve had good luck if you’ve only had to ditch 3 care providers! I want your karma. Please send it my way.
Zackary: For me, based on my experience, rational responses such as yours don’t seem to show up in the exam room.
Doctors do not like to be questioned. It is much more efficient for them if the patient just does what they say. They have preferred treatment plans and agendas, listening to a patient really messes them up. There is very little give and take in the current system, even though patients want it and would benefit from it.
We also need to factor in the abusive passive-aggressive environment in which doctors are trained, which burdens them with compromised communication skills when it comes to patients.
It boils down to this: I can say to my doctor, ‘I have a history of hpa-axis suppression with am cortisols of 1*, which you can see in your medical records system, and I think I’m having problems. Can we test my cortisol?’
The answer I get every time is NO. Even after they look at my medical records!
Which is why I had to take premed classes and then beg and beg and beg for medical care. Every one is SO shocked when my cortisol is low!
So until I can get a ‘yes’ to such a simple question, the doctors can do no right and the patient really isn’t the problem. Period.
*For the non medical readers, this is essentially not compatible with life. It’s serious and deadly if left untreated.
It hurts to hear of the experience you’ve had. All I can say is that indeed we’re working for a world very different from what you describe.
The key words in your reply are “based on my experience.” I can tell you first-hand that my doctors, at Beth Israel Deaconess in Boston and earlier at Mass General, don’t (and didn’t) at all object to being questioned. So, such doctors do exist.
To be sure, I make a point of engaging with them like partners, asking questions out of curiosity, not attacking.
But then, when I’m selecting a doctor, I make a point of interviewing them, and finding a good fit. So when question time comes during an appointment, it’s not the first time we’ve done it.
Have you been able to interview docs, or are you in a system where you take what you get? Have you asked if you find one who’s a better fit? (Asked nicely at first, I presume.)
This is a great discussion, Dave et. al.
I couldn’t help myself; I modified the 10, and added recommendations for clinicians, too.
Sue Woods, MD
And your response was so great, I just noted it in a separate post here! http://pmedicine.org/epatients/archives/2011/06/dumb-patients-no-way-it%E2%80%99s-only-normal-behavior-and-status-quo-clinical-care.html
More more more, Sue! That’s one of the best articulations I’ve ever seen of advice that awakens and empowers both partners in this new dance.
To Zachary’s point regarding “under what circumstances would you exercise that freedom” to ditch a doctor: In our circumstances we quickly found out that the supply and demand for pediatric neurologists is way out of whack. The few overbooked, overworked and harried doctors couldn’t keep up with the many families desperate for answers while their children struggled along between appointments that were too few and far between. At first, I asked whether I could send questions and info ahead. I soon realized it just wasn’t humanly possible for the staff to review anything in advance with such a patient load. That’s when I developed my memo template for every appointment so as to be respectful of the doctor’s time and make appointments as efficient yet productive as possible. Yes, we did a lot of doctor hopping (amid my fears it would “look bad” and the new practice would question why we never seemed to stick with any one doc for very long).
I should also add we live in a large metropolitan area with many large medical centers. I can’t imagine living in a less populated area where the choice to switch doctors would be much more limited.
We are happy with our current choice, where there are long waits in the waiting room, but the staff encourages frequent appointments whenever either the doctor or the patient feels it is necessary. This is in contrast to previously being told we’re “not due to be seen” and minimizing my concerns.