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Wednesday
Oct262011

Where You Are Is What You Get

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By Jill Arnold

 

From “Improving Patient Decision-Making in Health Care: A 2011 Dartmouth Atlas Report Highlighting Minnesota”, a report of the Dartmouth Atlas Project, whose major funders include the Robert Wood Johnson Foundation, the National Institute of Aging, California Healthcare Foundation, United Healthcare Foundation, and the WellPoint Foundation.

 

All too often, patients facing the possibility of elective surgery are not given an opportunity to understand their options fully. Many patients are not even aware that the decision about elective surgery is actually a choice and that it should generally be theirs to make. Instead, they routinely delegate such important, even life-altering decisions to their clinicians in the belief that “the doctor knows best.” The result is that patients often do not get the treatment that they would prefer. Research suggests that for many conditions—especially those that can be treated with elective surgery—the treatment a patient receives depends more on the physician’s recommendations than the patient’s preferences.1

Clinicians are not mind readers. They often do not know or ask their patients about their values and preferences; or they may assume that the patient’s values are similar to their own. As a result, they may recommend treatment that is different from what their patients would have chosen had they been fully informed.2,3 Clinicians also vary widely in their opinions about the best course of treatment for any given condition.

These differences in clinicians’ personal beliefs and opinions contribute to the variation in surgical rates in different geographic locations. For example, there is considerable disagreement among surgeons about the need for back surgery, its effectiveness, and even the best way to diagnose the cause of back pain. With no consensus about how to diagnose and treat back pain, the rate of back surgery varies widely from place to place.

 

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Reader Comments (12)

When informed consent does not include all the options, including doing nothing, and not every option is offered, the procedure is not elective, it is coerced. As in "elective cesarean" for breech and "we don't do VBACs here."

October 26, 2011 | Unregistered CommenterKellie Northam

Just lived this. My husband had a rare, still-unexplained spleen bleed. There was a clear and reasonable possibility of a splenectomy the day it happened, but he stabilized. The general surgeon said probably a cyst and he'd remove the spleen in 3 weeks--no questions to us about preferences or info about options. I asked whether they could just take part of it, and he made the mistake of saying that was impossible, that the spleen can never be operated on in situ. I'd seen surgical reports of partial splenectomies, so I knew it wasn't impossible. He also said the spleen was too massive to be removed laparoscopically I found a YouTube video of a partial splenectomy, tracked down the doc who performed it on the opposite side of the country, who put us in touch with a minimally invasive surgeon here, who to our amazement said that (a) the spleen wasn't that big and could be removed via laparoscope and (b) probably didn't need to be removed at all because there's no cyst, no lesion, nothing to remove. Best of all, the second surgeon began the consult with "Well, it depends what your goals are...."

Bottom line: it shouldn't be necessary for a patient's wife to go all ninja in order to get good info on options.

October 26, 2011 | Unregistered CommenterLiz

Like the care/options presented you vary widely among regions, the degree to which you are given information to exercise your right to informed consent/refusal does too. While I believe docs personal opinions, esp based on experiences, should be expressed when giving medical rec, I also strongly feel that they should be obligated to make it clear where those opinions differ from scientific evidence based rec. If its an OPINION then label it as such. I think it is unprofessional to give me your opinion, esp if it varies widely from the rec based on Scientific, Evidence based care, then call it "sound medical advice." I can decide which I trust more: the doc's opinion or the Science. And I should be given the opportunity to do so.

Given that there is such variables in care received, information given, the degree to which any doc will shape their Standard Practices on their own personal beliefs/opinions vs. using Scientific Evidence, and their own feelings on the right to informed consent/refusal--it is even more imperative that, in order to get the best care possible--instead of the best care a particular doc likes/agrees with/knows about--that you be an advocate for your own Healthcare--you do your own research, ask questions. Be an informed, active participant in your healthcare decisions. Don't spend more time researching what kind of car to buy then info about your health. And use your power as a consumer--after all even docs want to make money-- to influence a change in the system. If your provider is close minded, ignores current research in favor of long help practices/beliefs or doesn't encourage you to exercise your right to informed consent/refusal, or worse yet discourages it & expects to be able to dictate to you rather then inform you of your options--then find a new provider. As a consumer, if you want better then demand it. And refuse to settle for less.

I had a hosp VBAC w/CNM, then a HBAC also w/CNM. Throughout planning & my PG, it was never far from my mind that I had these options b/c of where I live. That's all. If I was 100 miles farther in any direction, my options would have been much different. I find that tragic & inexcusable. The system obv isn't "policing" itself very well. As consumers, it is our job to step in and demand better care--NO matter what your Zip Code is...

October 26, 2011 | Unregistered CommenterSara W.

"I had a hosp VBAC w/CNM, then a HBAC also w/CNM. Throughout planning & my PG, it was never far from my mind that I had these options b/c of where I live. That's all. If I was 100 miles farther in any direction, my options would have been much different. I find that tragic & inexcusable. The system obv isn't "policing" itself very well. As consumers, it is our job to step in and demand better care--NO matter what your Zip Code is..."

Just to play devil's advocate for a moment... is your ability to have a VBAC in a variety of settings in your location a function of provider opinions and protocols, which are subject to internal 'policing,' or are they a function of provider availability, which is to a large degree not (understanding that these things are not mutually exclusive). I talk to a lot of women who are interested in VBAC, vaginal breech, birth center births, etc., but are unable to access them because of geographic location and provider shortages. This is a systemic problem, but maybe not the same system that you are referring to -- it brings in question of urban/rural disparities, economic inequality, access to professions, and other problems that necessarily cannot be addressed by a consumerist 'get educated and demand better' model, which is ultimately a model predicated on a high degree of privilege.

That's not to say that I think that there is not some internal regulation that should be done to address the problem of uneven care -- I am especially troubled to know that a physician's political beliefs are correlated with their likelihood of trying to override patient refusal of cesarean, and think that this is something the profession needs to address -- but I am starting to wonder what ends the consumerist model is going to yield, especially for those who don't get a seat at the table.

October 26, 2011 | Registered CommenterCourtroom Mama

“but I am starting to wonder what ends the consumerist model is going to yield, especially for those who don't get a seat at the table.”


How could it yield anything but what it already has? We can expect the perpetuation of racial and socioeconomic disparities because, as always, some of us have the privilege, education, and linguistic and cultural capital that makes it far more likely for us to advocate for ourselves and more likely for us to do so as pregnant women without the fear of persecution or prosecution.

This obviously goes far, far beyond maternity care but pregnancy involves highly politicized issues of attempts to confer rights on the fetus, putting mother and baby at odds from the start.

You also bring up the question of who really has a seat at the table. Is it really "consumers", per se, or is it paid consumer advocates? And do they really speak well for the consumers they claim to represent?

October 26, 2011 | Registered CommenterJill

I have often beat myself up since the unnecesarean of my daughter nearly 4 years ago. I tell myself, if only I had researched more, and not blindly trusted my doctor. And I did do research, just not enough. I thought my mom would be a good doula for me, since she'd had me naturally after a long labor and had practiced for a period of time as an L&D nurse and had caught babies... Little did I know she would end up being terrible support for me, and freak out at every little thing the doctors said, because she knew what could go wrong. And I sometimes wonder if my HBAC turned CBAC of my son a year and a half ago had anything to do with issues from the first time around... At least with him, I started out with spontaneous labor and not an induction...

But more recently, I have begun to take a different look at that. My situation reflects just like what is described above. I was naive enough to think that my body knew what to do, and all I had to do was let it. What I didn't know is that I needed to be prepared for my body to try to do what it is supposed to, in SPITE of my care provider.

Since then, of course I have gotten much more informed and became an advocate in my community. At this point, I just hope I am making a difference ...

October 26, 2011 | Unregistered CommenterJennifer

I wanted to recommend a book I'm reading for class - The Rights of Patients: The Authoritative ACLU Guide to the Rights of Patients (yes, that's the real title, designed for people that suffer from colon-induced amnesia). It's question-and-answer format (and surprisingly enjoyable reading) and has given me a much better understanding of what really good informed medical choice should look like (as well as some of the law surrounding the topic).

When I think about this, I tend to focus on the clinician's responsibility to inform more than the patient's responsibility to be informed/be willing to make their own choice/etc (I can't even think of a way to phrase that that I'm happy with, honestly), simply because in a relationship with such a power differential, I think that the onus is on the clinician to create a situation where both parties are participatory in the right ways. That said, I do wonder how patients (of all sorts, not just maternity) think about this. What proportion of people do throw up their hands and say 'doctor knows best' and don't want to hear any more? Then again, what proportion do so because they don't know how to get or ask for more information, or how to judge among options once they have it?

I think it's so easy to feel helpless, especially if you're facing a sudden or serious illness, and think to yourself "now is not the time for me to get philosophical," when in fact it's *exactly* the moment you need to get philosophical and, like Liz's husband's surgeon, ask "what are my goals?" But this kind of life-introspection is difficult under any circumstances, even without the doctor-patient relationship, and even without whatever malady has you freaked out and anxious.

October 26, 2011 | Unregistered CommenterJMT

@Jill Precisely, but of course you knew I was going to say that :) As for the seats at the table -- well, even when consumer advocates aren't paid, I still have a feeling that they are not a true representation of people in need of maternity care in America. There is of course the giant question of race and class (which is not by any means to erase the work of the many woman of color-led birthing justice organizations, or the individuals living in poverty who may be leaders in maternity care reform), but there is also the question of representation of philosophy and values. As one woman pointed out in an NPR piece linked a couple of weeks back, lots of women are more interested in the 'baby experience' than the the 'birth experience,' and no amount of rhapsodizing about bonding and bodies being 'made for this' is going to change that. Robbie Davis-Floyd brings up the point that most women actually do want epidural anesthesia, so some advocacy just comes off as tin-eared.

But of course you knew I was going to say that ;)

@JMT I am right there with you on the question of the authority gap creating a greater responsibility on the part of the party in power. This is the essence of the fiduciary relationship between a doctor and patient.

October 26, 2011 | Unregistered CommenterCourtroom Mama

What a complex topic.

I’ve said it before on this site and I’m sure I’ll say it again, but I believe the relationship you have with your care provider – and whether you see that care provider throughout pregnancy and through to your birth – is probably the single most important predictor of a positive birth outcome. And by positive birth outcome, I mean one in which everyone is physically and mentally healthy and mama feels as strong, if not stronger, leaving the birth as she was coming into it. I also strongly believe that it’s the relationship and not necessarily the care provider category that makes the difference, which makes me cringe when I read commentary (not in this thread) that pits obstetricians against midwives, for example.

I agree with JMT that the onus should be on the clinician to provide a participatory environment, if that’s what the patient wants. Women can become as informed as they want (and as Jill said, it’s likely because they have the ‘tools’ to do so), but if you’re coming from a place where you don’t even know what questions to ask, or even that it’s okay to ask questions, we can’t expect all women to become informed. Maybe some women don’t want to become informed or even participate in the decision making regarding their care. They still should get great care. Decision-making, shared or not, also changes depending on the context – think about making a decision about birth at a pre-labor visit versus after 30 hours of labor and you’re exhausted and just want it to be over. Not a one-size-fits-all situation and maternity is definitely in a category of its own.

October 26, 2011 | Unregistered CommenterRomy

Interesting that the report puts all the blame on patients. "Clinicians are not mind-readers." How about ASKING your patient instead of TELLING them?

October 26, 2011 | Unregistered CommenterC.
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