UNshared decision making in childbirth and breastfeeding

Friendly female doctor hold patient hand in office during recept

During my internship, I cared for Mr. R who developed leukemia as a result of successful treatment for lymphoma. His values and his experience of previous cancer treatment led him to insist that if the odds of cure were low, he wanted to return to his native island to die on the beach surrounded by his family.

He never got the chance.

His oncologist’s values and experience led him to believe that every chance of cure, no matter how remote, should be pursued aggressively. Therefore, he deliberately told Mr. R that he had a high chance of cure though he knew the chance was low. Mr. R consented to the treatment.

UNshared decision making has become the standard of care in midwifery and breastfeeding support.

Mr. R spent the remainder of his life vomiting, shaking with chills, and writhing in pain. Because of his damaged immune system, he was unable to fight a serious infection and it spread further even though we were treating it as aggressively as we possibly could. Three weeks after he was admitted, Mr. R died without ever leaving the hospital and without ever saying goodbye to his family.

The oncologist had engaged in UNshared decision making. Believing that he knew what was good for Mr. R, he tricked and pressured him into a treatment course that he did not want.

I suspect that we could all agree that UNshared decision making is unethical. So it’s rather surprising then that UNshared decision making has become the standard of care in midwifery and breastfeeding support. UK midwives enshrined UNshared decision making in the Campaign for Normal Birth and breastfeeding professionals have enshrined UNshared decision making in the Baby Friendly Hospital Initiative. Both represent violations of fundamental ethical principles.

Shared decision making is considered the pinnacle of ethical patient centered care.

As Michael J. Barry, M.D., and Susan Edgman-Levitan, P.A. explained in The New England Journal of Medicine in 2012:

The process by which the optimal decision may be reached for a patient at a fateful health crossroads is called shared decision making and involves, at minimum, a clinician and the patient, although other members of the health care team or friends and family members may be invited to participate. In shared decision making, both parties share information: the clinician offers options and describes their risks and benefits, and the patient expresses his or her preferences and values…

Critically, the patient is free to make a decision that is different than the one the provider might have made for her. Yes, it is true that the provider knows more about the medical implications of certain decisions, but only the patient herself knows her preferences and values and respecting those preferences and values are integral to providing ethical medical care.

They summarize shared decision making with a quote from a patient:

Nothing about me without me.

The Campaign for Normal Birth was until recently promoted by the Royal College of Midwives. Although the name has been changed to Better Births Initiative, the RCM has not changed its focus. Indeed, the primary goal featured on its website is:

Facilitating normal births for the majority and normality for all women.

In other words, the primary goal of the Better Births Initiative like the Campaign for Normal Birth before it is UNSHARED decision making. Like Mr. R’s oncologist, UK midwives have decided what is “best” for women without consulting women themselves. They insist that “science” shows that unmedicated vaginal birth is safest and therefore, they are justified in forcing it on every woman regardless of her experiences and values, and regardless of whether it is a realistic goal.

As Natasha Pearlman explained in Nightmare on the Maternity Ward a brilliant piece in the Times of London:

…[L]ooking back I would have expected to have been talked through some options: to be given a room, offered an induction, even just some simple advice on how to turn the baby.

The midwives did nothing. It seemed as if they had made the decision, without consulting me, to push me to the absolute limit to deliver the baby naturally. There was no option for me to change my mind. I was in a system out of my control…

Similarly, the Baby Friendly Hospital Initiative is based on UNshared decision making. Lactation professionals have decided what is “best” for mothers and babies without consulting mothers themselves. They insist that “science” shows that breast is best and therefore, they are justified in forcing breastfeeding on every woman regardless of her experiences and values, and regardless of whether it is a realistic goal.

Included among the Ten Steps of the BFHI are these:

Inform all pregnant women about the benefits and management of breastfeeding…

Give infants no food or drink other than breast-milk, unless medically indicated…

Give no pacifiers or artificial nipples to breastfeeding infants…

But shared decision making involves presenting the risks of breastfeeding — insufficient breastmilk, dehydration, failure to thrive — as well as the benefits. Shared decision making means that it is up to MOTHERS to determine whether to offer supplemental formula or pacifiers, NOT up to the provider.

Whether it is cancer treatment, childbirth care or breastfeeding support, decisions should be, as far as possible, based on SHARED decision making. The provider offers his or her assessment on options and outcomes and the patient chooses based on his or her values and experiences. By design, the patient should always be free to make a decision that is different from the one the provider recommended.

The Campaign for Normal Birth and the BFHI violate the imperative, “Nothing about me without me.” Both are deliberately based on UNshared decision making and that is wrong.

It was unethical when Mr. R’s oncologist deprived him of the opportunity to make a treatment decision based on his values and experiences. There is no possible justification for the suffering that Mr. R experienced as a result.

It is unethical when midwives and lactation professionals deprive women of the opportunity to make childbirth and infant feeding decisions based on their values and experiences. There is no possible justification for the suffering that mothers and babies experience as a result.

  • MaineJen

    This reminds me of a kidney patient we saw once…her kidney failed due to CNI toxicity. The CNI treatment was immunosuppression due to heart transplant. Her heart had failed due to toxicity from one of the drugs used to treat her childhood cancer. This poor woman could not win for losing. 🙁

  • Sue

    When I was first scannning this article, I thought it was about some sort of UN (United Nations) policy about shared decision-making. Oops!

  • guest

    The story about Mr. R. reminded me of a joke:

    Q: Why do undertakers nail coffins shut?

    A: To keep the oncologists out

    I heard that from an oncology clinician who has been working in the field for 30+ years.

    For him, it is one of those “if you don’t laugh about it, you’ll cry” situations.

    • mabelcruet

      The paediatric oncologists I work with are a surprisingly cheerful bunch. Children have a far better survival rate than adults (for Wilms tumour of the kidney-nephroblastoma-the 5 year survival rate is about 94%). And kids seem to bounce back from surgery a lot quicker-several years ago I was asked to do a teaching session for the paediatric oncology and haematology nurses-there’s a lot of protocols we have to follow when it comes to tumours, for example, it has to be sent urgently from the operating theatre to the lab so that we can take fresh tissue for tumour banking and for genetic testing, so I was asked to do a session on how we handle the tissues. There was a kidney resection planned for the Monday morning, so we had all the measures in place and I decided to photograph it step by step to use as an example for the session, which was held on the Friday.

      It was a ward based session in their meeting room rather than the lecture theatre so that everyone could go whilst still being available for the ward if needed. When I arrived, there was a little kid in the room sitting with one of the nurses-it turned out it was his kidney and he wanted to see what it looked like, he’d been told we’d taken pictures so he wanted to see it-he was bouncing around like a mad thing, 4 days post-op!

      A pathology colleague of mine was involved in this: What Colour is My Cancer?

      http://www.sciencedirect.com/science/article/pii/S1462388908001531#!

      It came about because of a paediatric oncology nurse who was doing a masters degree, and this was her thesis.

    • The Computer Ate My Nym

      Sorry, but if we’re telling those sorts of jokes, I have a variant…

      Oncologist comes to see her patient, a 90 year old man with dementia and pancreatic cancer. “I’m sorry,” the nurse says. “He died last night.”

      “He can’t die,” the oncologist says. “I haven’t given him chemo yet.”

      She traces him to the morgue then the graveyard, eventually digging his coffin up. Inside, she finds a note: “Patient has gone to dialysis.”

      Those renal people are so aggressive.

  • Sue

    The longer I spend in the practice of medicine, the more I realise that the role of a clinician is to explain the likely pathophysiology and risks to the patient, and come to an agreed plan of action – choosing amongst the options based on a combination of medical science and patient preferences.

    This does not exactly mean an equal relationship, because the provider is consulted for their knowledge, judement and skill. But it should be a mutually respectful relationship, at a human level. The customer can choose to do what they wish with the advice they get, but they can’t force the provider to act against their judgement or ethics.

    I don’t work in obstetrics, and people I see generally do want to follow advice – that’s why they seek care. I’m normally explaining/negotiating about what further testing might be required for a diagnosis, and how urgent it might be. I get the best, and most satisfying, interactions where I can use the skill I have to explain the situation, then talk together about what to do.

    The behaviour of many ideologically-driven MWs is much more paternalistic than that of most OBs that they are quick to criticise.

    • Dr Kitty

      Do you remember med school MCQs?

      If the question had “always” or “never” it was false- medicine has no absolutes.

      I find it helpful with patients to say “my goals are XYZ (to lower your BP/ help your anxiety/ regulate your menstrual cycle), and the options I would recommend include A,B and C. Do you have a preference for something already or do you want to talk about all the options?”

      Sometimes people have decided they want something specific, sometimes they have an idea what they want but want to hear about everything, sometimes they just want me to decide for them.

      For example, with anxiety, I have patients who want CBT and SSRI, patients who just want Propranolol, patients who want interpersonal counselling, patients who want (and don’t get) long term diazepam.
      Generally once I’ve explained the options, pros and cons etc I trust them to know what is best for them, but safety net so that if it isn’t working they know to come back and we’ll move to plan B.

      Except the people who just want diazepam- they don’t get it because I explain that I’m not willing to give them a benzodiazepine dependence as well as their anxiety, but we can talk about other anxiety management treatments.

      It seems odd that so much of obstetrics and midwifery assumes all patients want the same thing and prioritise the same risks in the same way.

      • Empress of the Iguana People

        You got multiple choice questions in med school? Surprises me

        • kilda

          yep, it’s multiple choice exams all the way through the first 2 years. In the preclinical years you’re trying to learn a massive volume of facts in a short time, and multiple choice is the easiest way to test that. Then you start working with actual patients and have to make the shift to problem solving in the real world where the answer is not one of four options sitting in front of you on a list.

        • Azuran

          Absolutely.
          Actually, the Certification exam for vets is North America is basically a 600 MCQ test.
          Think about all the ridiculous work it would require to properly correct thousands of tests with 600 not MCQ question. Each answer would need to be evaluated individually by someone with actual medical knowledge because medicine isn’t black and white and more than one thing could still be a right answer.
          When you want to test basic knowledge, it’s the best way to test the most.
          Testing for clinical ability is extremely hard and basically require to follow each student individually as they take care of multiple patients. It’s something that you can’t test for properly with any kind of written test.

          • mabelcruet

            For our clinical exams, we had long cases and short cases. Long cases involved you being watched by the examiners (2-an internal and an external examiner) whilst you took the history from your patient, then examined them, and afterwards you had to present your patient, findings and diagnosis, and then got questioned on diagnosis, differential diagnoses etc. In my med school we had 150 students per class: that’s an awful lot of patients who volunteered to be involved, plus a lot of man hours for examiners. And the short cases were more targeted-you got 20 patients, 20 minutes per case, spread over 2 days. The examiners (2 again) would say ‘examine this person’s cranial nerves and present your findings’, or ‘examine this person’s abdomen’. Again, a lot of very patient patients needed! I think they got expenses and travel paid for, but that was all. A huge amount of medical training depends on the kindness and willingness of ordinary people to be poked and prodded by students!

          • Dr Kitty

            Nowadays most medical schools have OSCEs – everyone examines actors who give identical histories and clinical skills are tested on models and simulations.The examiners also ask everyone identical questions and mark off a checklist.
            It’s fairer and more objective.

            Given that the long case at my medical school often involved the finding a patient in the wards with interesting clinical signs who was both well enough to be examined 3 or 4 times and willing to do so, it was slim pickings.

            My surgical long case was a man with acute pancreatitis secondary to alcohol who had all the stigmata of chronic liver disease. He was a thoroughly unreliable historian, the only bonus being that it meant the examiners went easy on me and didn’t ask “which species of spider and scorpion can cause pancreatitis and where are they commonly found?” and similar irrelevant curveballs they liked to throw in, when it was still allowed.

          • mabelcruet

            I had a GP long case, an elderly man with diabetes who was complaining about his eyesight. I discussed options about how he could manage this, and asked if he could get help from a family member drawing up his insulin dose. He started crying: I started thinking ‘ohshitohshitohshit…what do I do now?’ Completely blank, hadn’t a clue what to say, so I patted his hand and eventually said ‘I’m sorry, I seem to have said something to upset you’. During the viva part the examiner said ‘We particularly liked your use of silence during the interview’. I didn’t tell them it wasn’t deliberate!

          • Dr Kitty

            The GP exams are… odd.

            The first step is MCQs testing knowledge- you take it on a computer in the same places where people sit their driving theory test.
            It’s fine- there are lots of sample questions online to practice and it’s all about applying guidelines and common sense.
            There are some ethical questions too, presumably to try and nip the next Harold Shipman in the bud, but anyone who was really a psychopath could just learn the correct answers, and it’s not rocket science, e.g:

            “Your patient tells you they are leaving you a large amount of money in their will.
            You should
            a) Accept and continue as their GP
            b) Decline and continue as their GP
            c) Accept and insist they find another GP
            d) Decline and insist they find another GP”

            The second step is a sort of OSCE on steroids, held three or four times a year in London, it’s a mock GP surgery with 13 actor-patients, in a mock up of a GP consulting room. You have a few minutes to read a vignette before the patient comes in, then you have 10 minutes and basically you just do what you would do as a GP in that scenario. The examiners don’t speak- they just observe, and when the 10 minutes is up the actor and the examiners just get up and leave the room (unlike real life, where you just run later and later as the day wears on).

            You get marked on making the correct diagnosis, making an appropriate management plan and something waffly about rapport/ empathy/ meeting the patients’ needs. I think there was a 10 minute break after 6 patients, but I might be wrong about that.

            It was all so horrifying and went by in such a blur I can genuinely only remember two cases- a patient who had a learning disability and tennis elbow and was a plumber’s mate, and a blind woman who was pregnant, thought her partner would leave her if the baby was blind, and wanted to talk about genetic testing.

          • Sue

            I made a patient cry during my long case in my Fellowship Exam (emergency medicine) – had to help him with that but still get all the relevant information.

            OSCEs with actors are more predictable but, in my view, less real-life. I like the idea that the exam should test the unpredictability of patient encounters, but the criticism of this is in fairness and reproducibility.

            The quest for perfection can be the enemy of pragmatism.

          • Sue

            I know, I know, Dr Kitty! (puts hand up)

            No. 13 on my list of causes of pancreatitis was scorpion bite from Trinidad.

          • Azuran

            An easy way to score points with the teachers at school (especially the GP and internal medicine vets) was putting Addison’s disease in every single of your list of causes.

          • The Bofa on the Sofa

            THAT explains why my wife is expressing a concern about our dog now having Addison’s disease….

            (ok, he’s 13 years old, so old age can create problems)

            ETA: no, wait. Maybe that was Cushings she is worried about. Which is the one with like, total organ failure?

          • Azuran

            Probably Addison’s. If left untreated, it eventually cause what we call an addisonian crisis, which is a very severe state of choc that will lead to total organ failure and death if left untreated (and often even with aggressive treatment.)

            Cushings tends to be more a disease of older dog than Addison’s. But it’s a very chronic condition that tends to cause other chronic problems like weight gain, weakness in the joints, skin problems, repetitive infections, liver problems, diabetes and pancreatitis. (Granted, if you let enough complications pile up without proper treatment, you could eventually end up with total organ failure, but it’s not really something that happens… much.)

          • The Bofa on the Sofa

            But it’s a very chronic condition that tends to cause other chronic problems like weight gain, weakness in the joints, skin problems, repetitive infections, liver problems, diabetes and pancreatitis.

            Then it’s Cushings. He has everything except (at least for now) the liver problems, diabetes and pancreatits.

            Weight gain? Yep
            Weakness in the joints? Yep
            Skin problems” Well, he’s a bichon, it’s terrible
            Infections? She fears it is happening

          • Sue

            Our older dog has Cushings (diagnosed at about 12 years of age) – he was getting sluggish and heavy and we thought it was just old age, but he has improved with medication.

            Cushings is excess of corticosteroids, usually from a benign pituitary tumour.

            Addisons is lack of corticosteroids – in humans, leads to low blood pressure.

          • Dr Kitty

            One of the surgical professors was renowned for being someone who dislike people who tried to look smart by listing all the possible but unlikely differential diagnosis.

            Unlike some examiners who wanted a list of 30 possible differential diagnosis, with 28 zebras on it, he would be happy with just 2 or 3 reasonably sensible ones.

            So, if you said “Alcohol, gallstones, medications and idiopathic” for the differential causes of pancreatitis in this particular alcoholic Dublin man, he’d be perfectly happy.

            If you suggested trauma he’d want to know where that was suggested from the history. If you said scorpion bites he’d want to know where the patient had been in the last year, and if that was in the vicinity of any of the relevant venomous arachnids.

            Someone once suggested radiation poisoning in their differential for rectal bleeding in a Dublin housewife, I think he almost had a stroke and asked if there was anything from the history to suggest the KGB had made an attempt to assassinate her.

          • Ozlsn

            My son managed to be hospitalised with RSV and recovering well at the point the trainee pediatric respiratory consultants were practicing for exams. So I got to be interviewed 3 times about his (quite long actually!) medical history – my favourite question from the last person was “was there anything else anyone asked you that I should know?” I suspect it had been a long day for her, heh.

          • Azuran

            We had nurse student in the ward doing practical training when I had my daughter. I let them borrow her to practice physical exam.
            I also found it really cute how they were so squeamish and afraid of hurting me when they were tasked with removing the surgical staples of my c-section wound. They still believed they were like paper staples and went inside the skin like sutures.
            (A male nurse student was also the ONLY one who actually voiced support in my choice to supplement until my milk came in.)

          • Azuran

            The exam used to be a brutal multiple day thing with practical exam as well. (with a very high failure rate according to my older boss) But they changed it by removing all the practical parts to the exam and adding 1 year to the program. The additional year is spent doing practical training in the university hospital. Students take the history, perform the first exam, then make a diagnostic and treatment plan under supervision from the clinician, then take care of the patients etc.

          • Tigger_the_Wing

            I was one of those ‘patient patients’ for a cardiology clinical exam a few years back. Au$20 for travel expenses, and a huge free spread for lunch.

            Except virtually none of it was gluten-free; all I could eat was a bit of fruit.

        • mabelcruet

          In some of the exams, yes. My med school divided into pre-clinical and clinical years (years 1 and 2 were pre-clinical, 3-5 were clinical). So we did stuff like anatomy, physiology, embryology, biochemistry, histology and genetics exams in the first year; anatomy, therapeutics and pharmacology, pathology, statistics 2nd year, and then all the more clinical specialities in the last 3 years. Depending on the subject, the type of exam varies-most of them in year 1 and 2 were written exams with a mixture of multiple choice, short multi-part answers, and essays, together with a modular examination system where we had to do a project/special study and ongoing term assessments. In the clinical years, it was far more practical, but we still did some multiple choice (usually of the pairing up variety).

        • Dr Kitty

          There were combinations of T/F with negative marking to discourage guessing, best of four and some “rank the following options from best to worst”.

          The pass mark for all our exams was 50%.
          The questions were tough enough that it was always a challenge.

          The Always/Never things was about the only reliable tip for the T/F questions.

      • Sue

        Great analogy, Kitty.

        Yes – the “always” and “never” were generally a give-away – but what about when there were four rational possibilities? 🙂

        I suspect that most OBs and the rational MWs do negotiate between acceptable choices as well – we just don’t see the more reasonable discussions written about.

    • mabelcruet

      Absolutely. On this blog there have been frequent apologists parachuting in-Anna Perch and Jan Hocking to name two of them-to explain how they justify not giving women information about birth and feeding choices. It boils down to ‘breast feeding/natural birth is better for you, I know more about it than you do, so just do what I tell you and stop arguing’. They argue that if women do get given more information, they are more likely to make the ‘wrong’ choice (wrong being wrong for the lactivists/natural birthers, not the women themselves), so that’s why we need to lie to them. It’s grossly unethical.

      • And the same people SO resent the “patronising” attitudes of doctors…

  • You make a good point, actually.
    That’s something I need to think about…

  • TsuDhoNimh

    I was with my SO for a consultation with an orthopedic surgeon about a broken leg … the doc presented the two options for fixing it, gave the pros and cons of each in terms of infection risk versus time to mobility, amount of home care needed, etc.

    It was a very fact-based discussion from the surgeon who stood to make more money with one option than the other.

  • Emilie Bishop

    My experience in a BFHI facility was exactly like this. Instead of informing me of what was obvious to the LCs–that my breast shape was a strong indicator that I wouldn’t be able to fully nourish my son and would need formula for some or all of his feeding needs–some LCs outright lied and others brushed it aside because they decided it was more important that we breastfeed than that he be healthy and I be informed. I didn’t know what I didn’t know, and they were in no rush to fill the gaps in my knowledge. Yes, I wanted to breastfeed, but if someone had told me right away that I had IGT, I would have switched to formula immediately. Of course that was their fear. Priorities and all. But for anyone who is horrified at that poor man’s cancer treatment but promotes the BFHI or “normal birth,” ask yourself what the real difference is. Hint: there is none.

  • Sheven

    Well, that is a horrifying story. Imagine being in that kind of vulnerable position and having the people who can help you simply refuse. It’s a kind of torture.

    I think in the long run this will be good for midwifery. Every profession occasionally needs its feet held to the fire so it can correct itself. Doctors in the middle of the last century needed to be told, quite forcefully, that they were not there to enact their will on women giving birth. Now midwives need to be told the same with equal force.

    • Who?

      The horrifying bit is in the space between what they mean by ‘help’ and what the patient means by ‘help’.

      The patient wants to be given all the options, and some measure by which to balance them.

      These providers want to offer only what they approve of.

  • Dr Kitty

    People are…odd.

    I have had a patient take the news of debilitating, progressive, incurable neurological disease quite sanguinely, and then fall apart because their cervical smear shows a mild abnormality that needs treatment but which won’t cause any problems.

    I have had people who want everything done and people who want nothing done.
    People who have unrealistic goals, people who have completely realistic goals and everything in between.

    What one person values as important may mean nothing to another.

    Why not have something achievable as a goal?

    “We will work towards delivering holistic, professional care that enables each woman to have the safest birth experience, and one that she finds most acceptable, in her unique situation”

    • attitude devant

      ACOG used to have the motto “Childbirth in safety with dignity.” Seems like a laudable goal.

      • Roadstergal

        That’s a really good concise mission statement.

        • attitude devant

          Yeah, but the CPMs would tell you it’s not empowering.

          • Because safety and dignity are overrated?

          • attitude devant

            There you go, fearmongering again.

      • guest

        I love that motto – simple, elegant, kind.