Musings of a Dinosaur

A Family Doctor in solo private practice; I may be going the way of the dinosaur, but I'm not dead yet.

Tuesday, September 01, 2009

The Dirty Little Secret About Patients as Partners in Health Care

Patient empowerment, shared decision making, patients as partners in their health care; these are the latest buzzwords in this age of consumerism, where patients have morphed into glorified shoppers. Under this alleged new paradigm, it is our idealized job as doctors to explain everything to the patient (after properly diagnosing them, which of course includes explaining everything about each diagnostic test or procedure, including all the possible diagnoses we are thinking about) so that the patient can then make an "informed decision" about treatment.

The dirty little secret is that medicine doesn't work like that.

Despite the abundance of information on the internet, the practice of medicine is more than just the application of an abundance of information. Above and beyond the knowledge conveyed during medical school (half of which is wrong, although no one knows which half) and the experience gained during residency training is the years of day-to-day exposure to that medical knowledge and training experience in real live people -- the practice of medicine.

This is why no amount of information -- whether obtained from me, the internet, or even those really cool collections of pieces of dead trees called "books" -- will ever properly equip a patient to make an actual medical decision. The dirty little secret is that in the final analysis, it will always be doctors who ultimately make decisions about medical treatment.

Although I am technically speaking of paternalism, the concept of one person (who supposedly is more knowledgeable or capable) making decisions for another, I am by no means advocating a return to the days of the "Don't you worry your pretty little head about a thing" doctor-patient relationship. I firmly believe it is my job not just to make the decisions, but to explain to my patients in as much detail as they want and need exactly why I am recommending a particular course of treatment.

I tell my patients that I only offer them choices when it doesn't matter. If your blood pressure isn't controlled on 10 mg of lisinopril, we can either increase it to 20 mg, or add a diuretic. Each of those courses of action is equal in expense, number of pills (it comes in a combination product) and has an equal chance of controlling the blood pressure (and if it doesn't, the next step is the other option; I have a lot of people who end up on linsinopril/HCT 20/12.5.) I think all doctors should do this. When you stop to think about it, it's the only thing that makes sense. It would be irresponsible to allow a patient to choose a clearly inferior treatment option.

The interesting thing is that most patients really do understand this. Many of them tell me in so many words that they expect me to make the decision (and to explain it to them, of course). If I were to do the whole "Here are your choices, you decide" tap dance demanded by the "shared decision making paradigm," not only would I be doing these patients a disservice, but I'd annoy the hell out of them.

The key is for physicians to acknowledge that we actually do have this responsibility. Whether the decision is about antibiotics for respiratory infections or the extent of high tech life support, the final call is ours. If we are honest with ourselves, we will recognize the extent to which we guide our patients to reach the same conclusions we have already drawn.

The bottom line -- the dirty little secret -- is that no, patients cannot truly be partners in their health care. Just because this truth is badly proclaimed by arrogant doctors and ignored by well-meaning but timid ones, it is still true.

Edited in response to comments:

Most of the comments, the ones from patients, missed my point. I am not arguing about the fact that patients ought to be involved in their medical care to whatever extent they wish to be. That is a given. It is also a given that my job is to explain, educate, discuss, negotiate, and do whatever is required to assure patients' involvement in their care.

My point -- the dirty little secret -- is that in the final analysis, patients cannot truly be equal "partners." The anti-paternalism pendulum has shifted too far the other way when timid doctors abdicate their decision-making responsibility in the name of "patient autonomy."

(And as for the anonymous pharmacist complaining that lisinopril is a crappy drug with formulary issues, what planet do you spend most of your time on? Sure, there are lots of different drugs available, but lisinopril is a perfectly reasonable first choice for many people. It's also on everyone's $4.00 generic list (10 and 20 mg, with and without 12.5 mg of HCTZ), so f*** the formularies.)

One last time:

I'm amassing quite the collection of straw men in the comment trail. I am neither saying nor implying that doctors make decisions in isolation from their patients' preferences and individual situations.

Think of it this way: what do you do when the patient makes the wrong choice? Not just shades of gray, like doubting a physician's judgment call about prescription recommendations, but black-and-white, no-doubt-about-it, life-threateningly wrong decisions. "Choices" like the one made by Shadowfax's patient with a curable tumor in her leg who is refusing chemotherapy. "Decisions" by a woman in labor with a transverse fetus refusing a c-section because she doesn't want to be the "1 in 3 women who are getting their babies cut out of them."

Are you all really telling me you'd be willing to let patients suffer and even die, all in the name of "shared decision making"?

That's the "dirty" part of the secret.

(Thanks to DB for backing me up on this one.)


At Tue Sep 01, 05:56:00 AM, Blogger ER's Mom said...

Just like parenting...give them a choice that isn't really a choice.


At Tue Sep 01, 09:43:00 AM, Anonymous Anonymous said...

This is largely true, and I have experienced this annoying ways, like when my eye doctor told me it was up to me whether I wanted a steroid to reduce scarring in my eye, even though it probably wasn't needed- then I am all, well, is it needed? I care about my vision! why bring it up if there's no chance the scar will affect my vision! But if I don't need it, don't give it me, because who needs extra drugs?!? How am I supposed to know what the right call is there?


On the other hand, if it is something more serious and you DON'T give me the feeling that I am a decision-maker, well... I am the one who has to actually follow up on your recommendations, and if I don't want to, or think that it is not needed for whatever self-diagnostic reason of my own, I won't. And yes, that basically leaves the choice of treatment vs. no-treatment, but that IS a decision.

I am less stupid about this now than I was ten years ago- more likely to tell the doctor what I think might actually be happening, or to be honest about what I am actually going to do with their recommendations, when I completely and intentionally ignored my doctor telling me I needed to see an endocrinologist asap... but I still haven't been to one, and hey, since it has been ten years and I am fine, I am gonna guess my decision-making worked out okay after all. I'd make the same call again today, probably, but I would say so, instead of just saying I would do it later, or rather, would tell my parents (I was a minor then) and then not doing so, but that's just because I am not a teenager now, not because I am just automatically going to do what anyone in a white coat tells me is best, whether I agree or not.

At Tue Sep 01, 01:38:00 PM, Anonymous Anonymous said...

I think patients and their doctors can be partners but not equal partners. I don't go to my doctors simply because they have prescriptive authority & OR privileges; I go to them because they have the training, expertise, and clinical experience to guide and care for me. In the end, however, the final decision is mine.

At Tue Sep 01, 08:53:00 PM, Anonymous p2 said...

As Joe Patient, my doc better be able to troubleshoot me, make an educated diagnosis, and draw a valid conclusion from that to provide me with the best course of action to fix the problem at hand. If all they're going to do is cure the symptom (Second Rule not applicable in this instance)and let the disease run merrily along (First Rule???), I'm finding a new sawbones.

Keep me informed, tell me what your thoughts are and why, but YOU"RE the expert. I'm just along for the ride here......

At Tue Sep 01, 09:29:00 PM, Blogger Sevesteen said...

I'd like my doctor to make recommendations with a bit of the reasoning behind it. I'll probably follow the advice, but I don't like it when I get a "here, take these twice a day, bye". (I don't have that doctor anymore...)

If you can't explain what is going on to me, I'm not going to trust you.

At Tue Sep 01, 10:10:00 PM, Blogger ccinnkeeper said...

[deep breath here] Oh boy.

I'm going to partially disagree with you here, doc, and tell you that I firmly believe that it depends on the PATIENT whether you involve them in the decision or not. And yes, I am fully aware that this requires that physicians get to know their patients well enough to know which kind of patient they are: the ones who can participate in their own health care decisions, or the ones who need to be told what to do. I am also aware that for various reasons it isn't always easy to determine which type of patient you have in front of you, and that even if you ask the patient, they may not know or may not tell you the truth or what they tell you may be the truth as they see it but may be wrong.

But let me tell you this: I absolutely want to be part of the medical decision making for my own care, even if the choice I am given is "take this pill and live or don't take it and die".

I realize I am not the average patient. I actually pay attention to what is going on in my body and am able to discuss it. I research things and I have just enough medical knowledge to be dangerous (I was an EMT for almost 10 years). And one of the things I hate most is being spoken to as if I have no say in my own care, the "paternalism" you mention. I have left the practice of more than one doctor who refused to listen to me.

There are certainly patients, particularly of my parents' generation or older, who prefer for their doctors to hand them orders and wouldn't know how to make a medical decision in many cases, but there are also bright, involved patients who make extremely good team members in their own care and I hope you are able to acknowledge that when you encounter one.

At Tue Sep 01, 10:42:00 PM, Anonymous Anonymous said...

Have you noticed that no one who responds to a medical blog is ever an "average" patient in any way?

Except me. I'm pretty stupid and far too busy paying attention to my own job to do someone else's. So I'd need guidance. And I'm a little suspicious that some medical practices put you in for tests and stuff that aren't really necessary, but maybe I just don't understand the necessity?

But the first comment, gosh, that does sound pretty old fashioned and paternalistic.

Maybe I want guidance without the overtones of paternalism, somehow?

At Wed Sep 02, 02:53:00 AM, Anonymous Anonymous said...

Wow! What arrogance. I thought that was a thing of the past. As a pharmacist, I can tell you that when your patients come to me - they don't have a clue what is going on nor why when they bring in their prescriptions - at least 80% of the time! The physicians who educate their patients the most are psychiatrists - go figure!

You might prescribe lisinopril/HCT 20/12.5, but it may not be on the pts formulary (its also a crappy drug). But, since you've convinced the poor pt that this is the best thing, now you've undermined their trust in you when I give them a rejection due to non formulary status. You've told them this is the best, but their insurance company says differently. When they ask, I have to concur that there are many equally valid ways to control blood pressure, GERD, whatever.... Additionally, you are absolutely wrong that your examples of choices are equal in expense. They are NOT & physicians don't take the time to learn this fact. When was the last time you asked a patient what they spent on their medication? Most all Medicare D patients are in the donut hole now & you'd be amazed!

How about giving them more education and letting them be a part of their care? Mostly, you have no idea how much detail they want because they don't know what to ask. So, they go to their sources - as poor as they might be. What ends up is you've gone on your merry way by prescribing whatever your personal choice of prescription cocktail you like, but I can see the patient is not taking it and telling you what you want to hear, but the physical findings tell a different story. If they saw you monthly like they see me, you'd know they don't particulary like what they're taking or the price prevents them from taking the prescribed dose - so they stop.

Perhaps, if you gave them choice when it really DID matter, you might hear the whole truth

At Wed Sep 02, 07:31:00 AM, Blogger Jennifer said...

I partly agree. When my daughter broke her arm - I wanted the specialist to tell me his opinion, and make the decision. I do not have the knowledge necessary to make the decision - nor did I have the time to do research regarding it.

OTOH - if you are my pulmonologist and we are discussing my asthma treatments - I do want to be involved. I've spent the last 20 years learning about this disease and how my body reacts to different treatments. I know when a bronchodialator will and will not work. I can tell you when I have pneumonia by the taste of my sputum. I can tell you when I need some steroids, and I understand their risks.
It's incredibly frustrating to not have a doctor listen to you when dealing with a chronic illness.

At Wed Sep 02, 01:14:00 PM, Blogger Midwife with a Knife said...

Hm... I think that really everybody HAS a choice. The act of following through with the plan of treatment is actually a choice people make. And if you suggest something that someone feels is completely un-doable, all patients DO have veto power, up to and including even leaving the hospital AMA. Ultimately, everything IS a choice.

At Wed Sep 02, 03:12:00 PM, Blogger PGYx said...

Check out Pauline Chen's interview ( with Dr. Donald Berwick, an advocate for patient-centered care.

Berwick recently published "What 'Patient-Centered' Should Mean: Confessions Of An Extremist" in Health Affairs, a health policy journal (

I'm all for educating patients about their conditions and which medications they take (and why!), but some patients don't want to or are unable to take on this responsibility. I've had plenty of educated people swear they've never had high cholesterol only to share that they take Lipitor, which they tell me they "take for high blood pressure." Maybe the medical and pharmaceutical industries are partly to blame for people thinking that prescription medicines are harmless and that it's not important to understand one's health when the solution is just to take a white pill and a blue pill twice a day.

But the legal concept of physicians as "learned intermediaries" implies we cannot not expected to deliver the full weight of years of medical training & experience in an office visit or two. And without that full weight, consistently good medical decisions are all but impossible.

In an ideal world we would always be able to lead patient to a "right" decisions by sharing information and experience, but logic is just one driver of decision making. People of all backgrounds sometimes make ostensibly bad medical choices for reasons I could not have fathomed before I entered the health care field.

At Wed Sep 02, 06:18:00 PM, Anonymous Anonymous said...

I'm curious why the anonymous pharmacist doesn't like a drug that works, is dirt-freaking cheap, and has evidence of benefit for people with DM, CKD, and CHF and has pretty good blood-lowering ability in it's own right and is then combined with the drug recommended by JNC7(admittedly I think that may change with JNC8 and go to either chlorthalidone OR an ACE-I as first-line, which is of course what lisinopril, the denigerated drug, is.)

At Wed Sep 02, 07:40:00 PM, Anonymous Anonymous said...

Dinosaur - I'm living on this planet, specifically in California, thank you. Your sarcasm and language does not become you.

Lisinopril is a fine drug, as is benazepril, enalapril and many others. By themselves...they indeed are a perfectly reasonble first choice. However, when they are combined with the diuretic, they are then often not on a patients forumulary. They also don't offer flexibility for change as the pts condition changes. Your own post indicates you have "lots of people who end up on lisinopril/hct 20/12.5" - but where did they start & how often was the change made?

In CA, the 20/12.5 & 20/25 are more expensive than $4 generics - check the list - I know since I must match the price when necessary. As many of my patients require benazepril in combination rather than lisinopril (a result of the drug company ownership of the insurance plan - a discussion for another time).

The specific reason I don't like lisinopril/hctz (which is the one you specifically mentioned) is because both 10/12.5 & 20/25 have both red & yellow ferric oxide - I've had lots of people with allergies to these. Oddly, the 20/12.5 does not have these inerts. So, when they seem to be improving after starting on lisinopril alone then adding the hctz or changing the combination, they develop an adverse reaction & one physicians are rarely aware of. Some of the other combinations have less of this effect & hctz by itself is dirt cheap everywhere. So, in my mind - prescribe each individually which allows constant adjustment when needed. Often, movivated patients will lose weight, change their diet, exercise more & can drop the diuretic - less easy to do with a combination product. For the pt who requires more diuresis, it is easier to drop the hctz & add furosemide (again dirt cheap) & keep the ACE rather than switching off a combination.

The point I was making was by not including the patient in the decision making which includes options other than your combination ACE/diuretic choice, you've now placed the patient in a position of having to perhaps take a medication which they don't "trust" since you didn't prescibe it initially nor talk about it during the visit.

When I have to call/fax to obtain a change from one ACE to another or one ACE/diuretic to another due to formulary issues - I ALWAYS get the change. Yet I am in the position of having to explain that the drug they are allowed is equally as good as the one intiallly prescribed. That conversation should have been with you and the patient - not me and the patient.

Finally, your denigration of insurance formularies makes me wonder what awareness you have of your patient's financial drug burden, Not everything is $4 nor does everyone want to go to Walmart, which is obvious when one sees the rankings of rx income of the various retail drug outlets. At this time of year, Medicare patients are in the donut hole of Part D, which means they are paying the full retail price. - its is common to have patients spend $100-$400 or more per month - even at Walmart.

It is reasonable to have a discussion of how the patient is doing with the financial side of treatment as well as the medical side. As a patient I would like that and as a pharmacist, I often encourage the patient to go back or call their physician to discuss treatment options when the burden becomes too much.

I still maintain in the final analysis, the patient must be equal partners with their physicians to obtain & maintain as good of health as is possible for them. I find your paternalism toward involvment of patients a deterrant to that goal.

However, we can agree to disagree - in a polite manner I would hope.

In the end - patients will make the choice - by staying with a particular physician with whom they agree with or by changing physicians when they don't agree with his/her treatment approach.

At Thu Sep 03, 03:29:00 PM, Anonymous Anonymous said...

Here's a couple of interesting blog articles about an insurance company trying to facilitate patient empowerment and shared relationships between doc and patient:

At Thu Sep 03, 08:37:00 PM, Blogger Reality Rounds said...

I have been reading your blog for awhile but have not sent a comment (I think). I have to respectfully disagree with your reasoning on this issue. As a matter of fact, you seem very fossil-like, I guess that is why you call yourself a "dinosaur."
"My point -- the dirty little secret -- is that in the final analysis, patients cannot truly be equal "partners." Seriously doc? I agree that patients may not have the years of experience and schooling in the art of medicine that you have, but they have been living in their own skin forever. You may say the treatment is the best so do as I say, but is it the best for the person in real life? Does it work with their job, their family, their child care, their insurance, etc. Although you try to defend against it, this post is very paternalistic. I just read a post from a nurse whose infant had a chronic illness. She knew her child, the one that grew inside her for 9 months and she loved more than anyone on earth. Medical professionals ignored her thoughts and feelings on how to care for her infant. She was not treated as an equal partner to the detriment of her baby.
Also, in the field of Obstetrics in this country, it is increasingly becoming apparent that women have zero say in the birth of their own child, thus 1 in 3 women are getting their babies cut out of them. "A C-Section is just minor surgery, honey." Should pregnant women not be equal partners in their care?

At Fri Sep 04, 09:51:00 AM, Blogger OMDG said...

There's a difference between being treated condescendingly by some a-hole doctor, and being advised as to the right course of treatment by someone who is a compassionate listener. Too often the former happens. I think this is where the whole patient centered movement came from.

At Fri Sep 04, 11:35:00 AM, Anonymous Anonymous said...

From AHA Patients Bill of Rights:
"3. The patient has the right to make decisions about the plan of care prior to and during the course of treatment and to refuse a recommended treatment or plan of care to the extent permittedby law and hospital policy and to be informed of the medical consequences of this action. In case of such refusal, the patient is entitled to other appropriate care and services that the hospital provides or transfer to another hospital. The hospital should notify patients of any policy that mich affect patient choice within the institution."

Although this is the American Hospital Association Bill of Rights, it applies to physicians if they admit patients at all. Unless you are talking about a juvenile, the patient does indeed have the right up to and refusing care or leaving AMA.

Even with a juvenile, the physician is not the ultimate decision maker - the court is.

These are not straw man comments - they are valid comments on what many of us feel is an old and outmoded way of medical care. The fact you feel so strongly in "your" way of thinking only justifies your personal believe - which is fine. You obviously have a practice in which your patients agree with your philosophy.

Just let the rest of us have our own belief. My believe is neither alternative or complementary medicine - it is just simply I prefer to see a physician who can present me with my illness and treatment options then let me decide which of the options presented I prefer to take, in addition to waiting while I digest & decide all the information presented or choose to get a second or third opinion.

At Fri Sep 04, 05:21:00 PM, Blogger Vitriolic Virchow said...

I am a physician. I am not a medicine vend-o-matic. Patient autonomy goes up and down. I had very little autonomy when I was septic with a BP of 80/palp I couldn't have autonomy in that condition. I have plenty of autonomy when I'm choosing to follow or not follow a treatment regimen in an outpatient visit or in my own home.

In some cases, there are black and white right answers. The woman with the transverse fetus WILL have a c-section or she will die. She needs to be told that clearly. If someone has a fasting blood glucose of 400, they are diabetic, and need to be treated. If they have a gangrenous appendix, it needs to come out. There is no other ethical treatment, and the patient can get it done, or they can refuse if they want. But if they refuse, they're going to have to go elsewhere, because they cannot force a physician to do something that will not ever work. Period.

At Fri Sep 04, 11:03:00 PM, Blogger Reality Rounds said...

You seem to be amassing a large amount of straw men in your post updates also: "Decisions" by a woman in labor with a transverse fetus refusing a c-section because she doesn't want to be the "1 in 3 women who are getting their babies cut out of them."

I never stated women are "deciding" to refuse medically necessary C-sections, such as transverse lie, because they do not want to be cut. Please give women more credit than that doctor. We are not empty headed Stepford patients. The increase in C-section rates in this country has nothing to do with an increase in malpositioned babies.
You state: "If we are honest with ourselves, we will recognize the extent to which we guide our patients to reach the same conclusions we have already drawn." But what if those conclusions do not match what the scientific evidence shows? Should we go along with the doctor then? The astronomical rise in C-sections has not resulted in a decrease in morbidity or mortality in women or neonates. As a matter of fact they have increased morbidity. That is a dirty little secret.
My guess is we will just have to agree to disagree. *Sorry for taking up so much comment space. I like your blog and will continue to be a fan, even if we do not see eye to eye.*

At Sat Sep 05, 09:26:00 AM, Blogger #1 Dinosaur said...

@Reality Rounds: If you stop to think about it -- and actually read what I said and think about the point I'm trying to make -- you will realize that we are actually in agreement.

We as doctors DO have the responsibility to make sure that our medical decisions are based on best evidence. We also need to take out patients' preferences and needs into account.

Those doctors who don't -- specifically the ones recommending c-sections on marginal evidence -- are abusing their power over patients in a vulnerable position. My intention in this post was to call those doctors to task, as they are indeed responsible for the skyrocketing c-section rate with no appreciable improvement in maternal or fetal outcomes.

The other part of this dirty little secret is that although not all doctors make good decisions, patients are often sadly powerless to do anything else. (Most of the comments have been from the patient side on how to deal with this situation. My point was to shame the doctors into taking responsibility.)

At Sat Sep 05, 11:20:00 PM, Anonymous Anonymous said...

Now, you've clearly made your point - to shame physicians into a responsible discussion.

Had that been your initial blog, it might have been more well received....

Just sayin'

At Sun Sep 06, 10:39:00 AM, Blogger drcharles said...

A good post, and your heart is in the right place. The bottom line is you want to help the patient, and in an age of consumerization that's spread to the doctor-patient relationship, many choices will be made out of convenience and comfort rather than sound clinical reasoning.

The interesting thing i've found lately is patient behavior when I inform them that I am documenting their choice and the possible consequences in the chart. For example, Mr. B has been educated today about the possible causes of chest pain, and I have strongly recommended he go to the ER immediately to rule out CAD, etc... He refuses to do so despite a discussion of the possible risks to his health including MI and death, and he explicitly accepts these risks.... etc, etc.

Some patients are okay with that, but others seem to realize the risk in their judgment when so documented.

Who knows, maybe I'll be sued anyway god forbid the patient has a heart attack.

It's like the scene in "The Last King of Scotland" where a mad Idi Amin raves at his personal doctor, blaming him for all the bad decisions he's made. The doctor says something like "I warned you..." and Amin retorts, impossibly, "But you did not persuade me!"

Is it our duty to persuade everyone's choice, or do patients accept the awesome responsibility for the consequences of their choices, especially when they are contrary to our advice?

At Sun Sep 06, 05:19:00 PM, Blogger Reality Rounds said...

Thanks for your response Dr. D.
BTW, FP docs usually have below average C-Section rates :)
Kudos to you.

At Sun Sep 06, 10:24:00 PM, Blogger PhillyGirlDownUnder said...

I agree Dr. D that the pendulum has swung too far the other way. A close friend of mine had an emergency c-section with her first baby (after 38 hours of labor and, as it turns out, a baby who wouldn't have come out without the knife). She was perfectly happy with that, but when she was pregnant with her second baby, she wanted to know whether she could try for a vaginal birth again. No one was willing to say what their honest opinion was about the idea (not the midwives, not her GP, not the OB-gyns). Everybody gave her the facts & figures, the pros and cons, and told her the decision was up to her & her partner. They were completely confused, and all they wanted was someone to say either "look, I think you're too high risk" or "yes, let's try it and if there are problems we may end up having to do another c-section." They would have been fine with either of those responses, but instead they felt completely uneasy and unsure about what to do, and it was a source of stress throughout the later stages of the pregnancy. She ended up just scheduling a c-section...

At Mon Sep 07, 07:40:00 AM, Blogger Yehudit said...

Are you all really telling me you'd be willing to let patients suffer and even die, all in the name of "shared decision making"?


Given a competent adult, capable of making their own treatment decisions - however wrong you think those decisions are - I don't see what the alternative is. Forcible treatment? It's not really in the name of "shared decision making", it is just recognizing the limits of the doctor's power/responsibility.

As for most treatment decisions being clear cut....I don't think that is true at all.

Firstly, the preferred treatment may depend on the patient's values/perception, which may or may not be similar to the doctor's values/perception. (e.g. some patients would rather live with some degree of stress incontinence rather than undergo TVT surgery. The line at which surgery becomes a "benefit" that outweighs risks is almost entirely dependent upon the patient's perception of quality of life with the stress incontinence and how they risk averse they are, in regard to the surgery.).

Secondly, there are huge areas of uncertainty in most fields of medicine and doctors should be honest about these - not least so that patients become more educated about the need for clinical trials, and more willing to participate in them.

At Tue Sep 08, 10:03:00 AM, Anonymous Anonymous said...

Wait, so I wouldn't be allowed to turn down chemotherapy? I am a capable adult. What if I honestly consider things, and decide I don't want that treatment. You can't force it on someone, can you? We all have the right to refuse medical care, don't we?

At Tue Sep 08, 10:36:00 PM, Blogger Amanda said...

I walk a fine line on this topic. I very much am an active participant in my care. I know that I am not medically trained, but I know my body and my children. I know our reactions to things, and I know where I stand on issues that are controversial. Some things are not negotiable, no matter the medical advice. However, some decisions I just don't question (that emergency section for a prolapsed cord, and surgery for a gangrenous gall bladder that I spent 4 days in the hospital for, are two examples). However, the neurologist that gave me orally disintegrating pills of the newest migraine med that cost me upward of $140, and contain aspartame, one of my documented migraine triggers, that I question. I did stop taking it. I also know the difference in my headaches, and know how a sinus headache, tension headache, and migraine all "feel like" and what medication, or alternative technique to take do each situation. Thankfully, I have a Family Doc that listens to me (or at least makes me feel like he does, maybe his decision would be the same no matter what), and when appropriate provides me with a prescription. Sometimes, the answer is, "Nope, no antibiotic needed, it's just allergies, not an infection." Sometimes, "We're giving you an antibiotic injection and 10 days of pills, so this doesn't get worse." I trust his judgment. I did leave a ped practice where the doctor treated me as a brainless twit, and had no interest in anything i had to say.

At Wed Sep 09, 08:52:00 AM, Blogger Kate Burton said...

Sorry Doc, while I respect your years of training patients are equal partners in their care. If a patient is "non compliant" with medications they have made a choice. If they choose not to have additional tests done they have made a choice. It may not be the choice you or I would make but it is there's nonetheless.

Of course I am referring to patients who are capable of making informed choices. As for the examples in your update, the woman with the transverse fetus refusing a c-section becomes an issue for the Department of Social Services. The patient refusing chemotherapy is a completely different matter.

I am a three year breast cancer survivor, diagnosed at age 38. I had 12 rounds of chemotherapy. For me the decision to go forward was very easy, I was young and my children were young. Had I been 78 the decision would have been much more difficult. But the decision was mine.

My oncologist and I discussed all aspects of my treatment. Twice I brought recent research in for consideration. One time we followed the new research, the other we did not. That is shared decision making. It's also called mutual respect.

At Wed Sep 09, 10:45:00 AM, Anonymous stargirl65 said...

I believe that patient's should participate in their health care. I believe many patients with chronic illnesses are more informed then the general public about their health. That being said, many patients simply say, "Tell me what to do doc.".

The other side of the coin is the patient that makes medical decisions that go against the "standard of care." Sometimes very bad things happen to them. They have made the choice and I have informed them of the risks. Just don't come back and sue me because things didn't go as you had hoped. These cases exist and the patient often wins. The argument is that the doctor did not explains the risks strongly enough.

We need to find a balance.

At Wed Sep 09, 04:42:00 PM, Anonymous Tara said...

@Kate Burton:

According to the laws of the nation, and the laws of most states, the women declining a C-section, even for a transverse lying baby, should NOT become "an issue for the Department of Social Services." She still has autonomy and the right to make decisions regarding her own medical care.

At Wed Sep 09, 07:21:00 PM, Blogger Unknown said...

I think this strikes at a more fundamental issue, and that is that a well-meaning person can't let a person he or she cares about do something that would hurt them. When that person is a doctor, you're now adding a professional responsibility to heal and 'do no harm' on top of the normal desire to help another human being. So it's almost too much to expect a doctor not to have a paternalistic attitude. Of course, we value autonomy in this society and doctors try to incorporate this principle when treating patients. But I think it's all too easy for doctors to trick themselves into thinking they are giving their patients the freedom to determine their own treatment course by skewing their patient education in the direction of whatever route they believe is in the best interests of their patient--in other words, they don't provide complete information. Not that this is bad--as I said, if you really thought it was in the best interests of your patient to follow course A, why would you give course B a fair chance, when your patient might just choose that option?

At Wed Sep 09, 08:30:00 PM, Anonymous Anonymous said...


Why can't we all just get along??

Seriously, I am taken aback at the nurses having fits with this post. As I rebutted elsewhere, I'm a damned good nurse, but if I had the training and expereince of my doctor I'd have "MD" after my name, also....which I don't. I don't read this as a return to the days of "don't worry your pretty little head about this.." or doctors accepted for being righteous assholes. However, when the rubber meets the road I want someone with the medical training to save my rotund ass. And I hardly think Joe Sixpack has the insight needed to be a "total partner" in his healthcare. I beleived this horsehockey when the ink was still damp on my BSN, but not anymore. You educate patients as well as you can to share in this process..but someone has to be ready to steer the damn bus.

Pattie, RN

At Thu Sep 10, 08:29:00 PM, Anonymous Anonymous said...

Sometimes I wonder if the "shared decision making" is in part promoted by marketers who think they'll have an easier time convincing patients in the waiting room [especially those waiting rooms where the tv monitors are constantly running reminder ads] to switch medications than the MDs....

[I don't think that's the only factor; I just have seen a few too many marketing magazines where people are plotting the next DTC intervention]

At Fri Sep 11, 02:58:00 PM, Blogger Jonquil said...

As a patient, I've been frustrated on both extremes, both "Which do you want me to choose?" (and, far worse, "What do you suggest I do?") where my answer is I DUNNO I DIDN'T GO TO MED SCHOOL; and "don't worry your pretty little head", which philosophy is still alive and kicking.

I'm most grateful for my current neuro, who gives me choices *because both alternatives have risks*, and it's up to me to decide which risk is worse. It really is my call whether to put up with more pain or to risk serious side effects in the pursuit of better pain control, and I'm glad my doctor treats it that way. It isn't that it doesn't matter, it's that the tradeoff is mine to make.

At Fri Sep 11, 10:43:00 PM, Anonymous Anonymous said...

If I were to take my car to a mechanic, and he told me I needed to fix X, Y, and Z, I would do one of two things. 1) Just fix it there, if it's relatively minor. 2) Take it to another mechanic for a second opinion, if it's a major repair. And then let them fix it.

Most people I know would do the same.

At Sat Sep 12, 05:51:00 PM, Blogger Jenny said...

I haven't read the other comments, but I understand where you're coming from, and I agree with what you've said. I want to be a partner in the sense that I can choose a route of care that my doctor thinks is best. If there's only one option, then I guess that's what my choice is. I trust my doctor to have my best health interests in mind, and if he tells me something completely different from what I was thinking (getting information from the internet and such), I am going to go with what he says. He has the schooling and years of practice under his belt. I have known him long enough that I know I can trust his medical judgement and recommendations.

At Fri Dec 18, 02:24:00 AM, Anonymous Anonymous said...

You're absolutely right. You are, after all, the one who was trained for all this, not the patient.

I'm not saying, and I'm sure you're not saying this either, that anyone should baby their patients and say oh-so-infuriatingly "Because I'm knowledgeable and you're ignorant and I SAID SO", but simply that doctors shouldn't allow patients to make stupid mistakes.

After all, they're there for medical advice (which they can take or leave as they wish, mind you), not a medical debate.


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