Shared decision making is the only outcome that matters in evidence based medicine


Over the years I’ve made a variety of arguments about contemporary midwifery and lactivist philosophies:

1. They subvert science by exaggerating benefits of favored treatment options (unmedicated vaginal birth and breastfeeding).

2. They threaten safety by ignoring risks of favored treatment options.

3. They falsely declare favored treatments save money but neglect to include costs.

4. They are multi billion dollar businesses, not selfless provision of care.

5. They are anti-feminist because they judge women by the function of their reproductive organs.

But even if we were to ignore all these faults, we would still be left with the biggest drawback of them all; contemporary midwifery and lactivist philosophy are unethical.

[pullquote align=”right” cite=”” link=”” color=”” class=”” size=””]It is unethical to use population level outcomes as justification to ignore patient preferences.[/pullquote]


As the authors of Shared decision is the only outcome that matters when it comes to evaluating evidence-based practice explain:

[E]valuations of the impact of evidence-based practice (EBP) are invariably focused on improving population-level health outcomes (overall incidence of heart attacks or hospitalisations) rather than at the individual patient level.

We believe this focus is inappropriate and fundamentally flawed for the following reasons.

Population-level health outcomes rarely if ever take into account patient values and preferences and therefore by definition fly directly in the face of the fundamental goals and definition of EBP. Ignoring patient values and preferences or at least not placing them at the forefront of decision making legitimises the argument that the presence of effects at population levels is sufficient justification for recommending treatments even though the absolute magnitude of these changes clearly may not be important to all individual patients.

The authors are not writing about efforts to promote unmedicated vaginal birth or breastfeeding, but they could be. The problem is:

[A] fundamental misunderstanding many have about EBP: that the rationale and justification for EBP relies on being able to demonstrate that EBP somehow should lead to better clinical outcomes. This common misunderstanding pervades the current scientific discourse around EBP and impedes how, as a society, we should practice medicine. EBP is about taking care of individuals and is not about the insensitive use of population-based evidence. As soon as the question moves to one of clinical outcomes, this individual-to-population frame-shift occurs and clinicians often consider scientific probability at aggregate levels. Looking at outcomes for individuals is entirely different from thinking about evidence from large groups in trials and in cohorts.

In other words, EVEN IF unmedicated vaginal birth or breastfeeding are shown to have population level benefits, that does NOT justify pressuring patients to make those choices. That’s because scientific evidence is a tool akin to a measuring tape to be used to evaluate various treatment options, not a cudgel to be used to beat patients into conformity.

So, for example, we can counsel a patient about the population level outcomes of various treatments for a his metastatic cancer, but it would be unethical to pressure him to choose the option that has the best population benefit if it does not comport with his preferences.

So, for example we can counsel a pregnant woman whose fetus has a severe brain malformation about the dismal population level outcomes for babies like hers, but it would be unethical to pressure her to terminate the pregnancy if that does not comport with her personal beliefs.

So, for example, we can counsel a pregnant woman about increased systemic risks of a C-sections, but it is unethical to refuse maternal request C-sections.

So, for example, we can counsel a new mother that breastfeeding has population level benefits for babies, but it is unethical to pressure her to breastfeed because that is “best.”

The authors include a graphic that offers even more examples of what evidence based practice is NOT.


It’s NOT about saving money so it wouldn’t matter if vaginal births and breastfeeding save money (although they don’t).
It’s NOT only about the results of clinical trials and systematic reviews so no amount of scientific evidence on the “risks” of epidurals or formula feeding should be used to prevent a woman from opting for either one.
It’s NOT about achieving a specific outcome; it’s about achieving the outcome the patient prefers.

It is about using the best available evidence in a hierarchical way to answer clinical questions. But the answer to the clinical question is NOT the ethical determinant of the treatment, the patient’s decision is the determinant.

The authors conclude:

Evaluating evidence based practice decisions — N always=1

As healthcare professionals, we accept the need to explain to patients there is evidence of effective treatments at population levels. However, the decision whether to adopt most treatments at an individual level is a decision that is unique, context-based and derived by careful deliberation about trade-offs. This careful deliberation defines EBP, and in the vast majority of circumstances, the only outcome of relevance for EBP is to measure whether a shared decision was made.

The bottom line is that no amount of population based evidence justifies ignoring the needs and desires of the individual patient.

15 Responses to “Shared decision making is the only outcome that matters in evidence based medicine”

  1. Emilie Bishop
    October 10, 2018 at 2:06 pm #

    This might be my favorite of all your posts, Dr. Amy, and that’s saying something. It illustrates exactly what was wrong with my hospital’s blatant disregard of my multiple risk factors and difficulties surrounding breastfeeding–they are enamored with population data (that has itself been distorted) and think it should apply to each and every mother-baby pair. My pain and even my son’s health were irrelevant in the face of this data and the ideology formed from it. We suffered so much for so long, yet if I had been a partner in honest assessments of risks and benefits, we would have just fed formula from birth and enjoyed our time. Nothing is worth half of what my family went through, let alone one good method of infant feeding over another that’s just as good. Moms matter more than this!

    • Pamela Carson
      October 12, 2018 at 3:15 pm #

      Your story sounds exactly like mine. For some reason I never transitioned to the 2nd phase of milk production. I could only ever produce colostrum-like amounts of milk. I tried for over 5 months to triple-feed and pump around the clock. I was an emotional mess at each lactation consultant appointment, severely sleep deprived and a danger to myself and my baby. If only one of these LCs assessed me as a whole person rather than as a milk producer maybe my family could have been spared some of that suffering. Thank goodness for Dr. Amy’s blog – it’s been so helpful in my healing process.

  2. NoLongerCrunching
    October 10, 2018 at 11:43 am #

    Is there a way to see a better resolution of that graphic? I can’t read it and the article is behind a paywall.

  3. demodocus
    October 9, 2018 at 9:58 pm #

    Ah, hell. Population wide assessments would suggest that pot is no worse than alcohol and might be better, but I’m still going to have a hard time with my allergic reaction.

  4. space_upstairs
    October 9, 2018 at 1:40 pm #

    I think vaccines may be an exception to this rule given that, barring medical need not to get one, their individual effectiveness depends largely and directly on population-level usage. Not so with things like breastfeeding, cholesterol control, and cancer treatment. Yet, I imagine many people who think things like breastfeeding and unmedicated vaginal birth should be near mandatory at the population level would argue that vaccines should be a free choice at best…because their philosophy is neither one of free choice nor greatest population benefit according to evidence.

    • Azuran
      October 9, 2018 at 10:18 pm #

      Well, there is this rule about society where one’s liberty ends where someone else’s liberty begins.
      So not vaccinating falls in the same category as smoking, speeding, drunk driving etc. When your decision affects others, then society has a right to regulate those.

      • space_upstairs
        October 10, 2018 at 5:03 am #

        Some, of course, would apply that rule to breastfeeding (and abortion): your rights end where your (future) baby’s begin. But both of these affect only one other (would-be) person, whereas smoking in public, speeding, drunk driving, and vaccine refusal could affect many more. If, say, feeding your child candy and burgers often (but not exclusively) is not illegal, neither should formula be, IMO, especially if the newer studies are right that formula is probably not so nutritionally inferior after all.

  5. October 9, 2018 at 1:25 pm #

    Slow clap. Exactly this. A patient forced to undergo a treatment they do not desire, absent an urgent/emergent need to do so has been violated.

  6. BeatriceC
    October 9, 2018 at 12:04 pm #

    OT: but you folks are the only group I have that has several physicians and I can’t find the answer to this question.

    A friend is trying to find out what the actual ACOG recommendations are for her particular situation are, so she knows if she has a complaint. She’s 40, 3 living kids ranging in age from 20 to 5, multiple first trimester losses and one second trimester loss. Period is 2 weeks late and she gets a faint positive on HPT. Because at least two of her losses were due to low progesterone levels, she’d like to have blood work done to confirm hormone levels, to either put her mind at ease or start mentally preparing for yet another loss. Her doctor told her to take another HPT next week and if it’s still positive they’ll schedule an appointment, but still won’t do blood work because “even if your hormone levels are low, there’s nothing we can do about it anyway”. My instinct is that this isn’t SOP, but I can’t find any actual information on what SOP would be in this case. Can anybody point me in the right direction?

    • Emilie Bishop
      October 10, 2018 at 7:17 pm #

      Not a physician, but when I got pregnant after a miscarriage and more than 3 years of trying, my doc didn’t waste any time testing numbers and doing ultrasounds. Your friend deserves more care than this.

    • AnnaPDE
      October 11, 2018 at 1:33 am #

      No idea what the ACOG recommends but when we tried IUI the doc gave me progesterone pills, just to make sure that low progesterone levels wouldn’t be an issue if it works out otherwise. So yes there is stuff that can be done about hormone levels.

  7. fiftyfifty1
    October 9, 2018 at 11:40 am #

    “The only outcome of relevance to EBP is to measure whether a shared decision was made.”

    I agree. But how to do this? Right now my employer rates doctors 2 ways and both are flawed:

    1) Percentage of patients adhering to specific guidelines (A1c, blood pressure, chlamydia test in the last 12 months, there are a number of others.) This way is totally flawed because patients have very valid reasons to opt out. For example, if a young woman is on a birth control pill, but I haven’t done a chlamydia test in the last 12 months, I get “dinged.” But some of these women have never had sex. They are on the pill for acne or cramps only. They don’t want to pay for a test they don’t need. To get our numbers up (for rewards from insurers) I am supposed to talk to such women in a way that implies the test is mandatory (the administration has sent out a script), but it’s not! Tricking them into this test is unethical.

    2) Patient satisfaction, Press Ganey scores. These at least capture the patient experience, but they are still super flawed. A few disgruntled patients can totally bomb a doc’s score. Refuse to give antibiotics for a cold or refuse to refill a narcotics prescription and you are screwed.

    So how to measure shared decision making? That’s a tough question!

    • Merrie
      October 10, 2018 at 7:38 am #

      I suppose you can only hope that your patient who you don’t force to do a chlamydia test she doesn’t need will appreciate you for it and give you a high Press-Ganey score.

      I was talking with a friend who’s on Depo for hormones only, not sexually active at all in any way, and really resents the required pregnancy test every cycle.

      • fiftyfifty1
        October 10, 2018 at 8:26 am #

        She shouldn’t have to do a pregnancy test every cycle, even if she is sexually active. As long as you are on time with your next shot, no test needed for anybody. Maybe she needs to find a new doctor!

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