Medical patients are uniquely vulnerable.
Ill, in pain and immersed in a system where the professionals seem to speak a foreign language, hospitalized individuals require special ethical and legal protections to make sure healthcare providers do not take advantage of them.
That’s especially true for unconscious individuals who are incapable of speaking for themselves. There is a specific ethical and legal standard used for making healthcare decisions about unconscious individuals, the substituted judgment standard. It requires that healthcare professionals choose NOT what the providers believe to be in the best interest of the patient but — as far as can be known — what the patient would choose for herself.
An infant’s benefit should NEVER be the determining standard for the mother’s medical care.
Therefore, it is appalling that a group of lactation professionals had the temerity to violate those ethical and legal principles to force an unconscious woman to breastfeed. Those professionals are so woefully ignorant about their ethical and legal violations that — amazingly — they published a paper to report them.
The paper is Who Makes the Choice: Ethical Considerations Regarding Instituting Breastfeeding in a Mother Who Has Compromised Mental Capacity. The answer is both simple and obvious to anyone with a basic understanding of medical ethics: the providers are REQUIRED to choose what the patient would have chosen for herself. But that’s not what the lactation professionals decided; they decided to FORCE the patient to breastfeed.
According to the authors:
A 25-year-old G4P3003 pregnant female was brought to the emergency department after being struck by a motor vehicle as a pedestrian. There was minimal past medical history available and no record of prenatal care in the electronic medical record, except report of her being ‘‘6 months’’ pregnant.
The mother had sustained a head injury, a fractured leg and there was evidence that the fetus was compromised by an abruption of the placenta.
On ultrasound, fetal biometry con- firmed an approximate 35 weeks of gestation with a weight of ~2,500 g, and a hematoma in the amniotic fluid with a thickened placenta consistent with abruption. The fetal heart rate was 75 beats per minute with minimal variability, and no fetal movement was seen on ultrasound. The patient was taken for an emergency cesarean delivery and exploratory laparotomy. A viable male infant was delivered with APGARS of 2 & 2 was brought to the neonatal intensive care unit (NICU) for care.
The decision to treat the abruption with surgical delivery of the baby (as well as the other treatment decisions) are entirely consistent with what any patient herself would choose since the abruption puts the mother’s life in danger.
In contrast, the authors have absolutely no reason to believe that this woman would have breastfed. No matter. They simply decided they could force her to do so.
The Lactation Medicine physician reviewed maternal medications, noted her history of illicit substance use, lack of prenatal care, homelessness, and placement of two prior children in foster care through Child Protective Services. Through network record sharing with other hospitals, the provider noted that the mother had provided breast milk to a prior child.
“Providing breastmilk” is not the same as breastfeeding; it sounds like something she was pressured to do during a previous maternity hospitalization. There is precisely zero evidence that this poor, homeless, substance abusing woman struggling desperately to survive would have chose to breastfeed this baby. But the well-educated, well-off lactation professionals thought they knew better.
How SHOULD the providers have determined what to do in this situation?
According to Substituted decision making and the dispositional choice account published in the Journal of Medical Ethics.
…[T]he surrogates should attempt to reconstruct the decisions the patient herself would have made, if she were capable, in the circumstances at hand… This standard is commonly justified by the principle of respect for autonomy. It has been suggested that when the patients are incapable of making the relevant decisions, their autonomy can still be indirectly respected by reconstruction, to the greatest possible extent, of the autonomous decisions they would have made if they had been able to make decisions.
The lactation professionals — in contrast — used a wholly inappropriate standard: the best interest of the baby.
The first question is if breastfeeding is the best option for the baby.
You don’t have to have a degree in medical ethics to know that not only is that not the first question; it isn’t an appropriate question at all. We don’t make medical decisions for one patient by what is best for ANOTHER patient.
As breastfeeding is the physiological norm and prevents infant morbidity and mortality one could argue that infants have an ethical right to human milk.
Even if the physiological claims were true — and there’s no evidence that they are true for 35 weekers — the authors are on extremely dangerous philosophical grounds when they imply that the baby’s interests are more important than the mother’s interests. The infant’s benefit should NEVER be the determining standard for the mother’s medical care; that would be both unethical and illegal.
An infant has no “ethical rights” vis a vis the mother’s body. If they did, mothers could be forced to give up kidneys or other organs to their offspring and their behavior could be regulated on an ongoing basis by society if it determines that certain behaviors are in the best interest of their children.
It’s difficult to imagine that the authors don’t know this. Had the mother told them she didn’t want to breastfeed, they would be REQUIRED to respect her wishes regardless of what they deemed in the best interest of the baby. Had the baby’s father or grandmother told them that the mother didn’t want to breastfeed they also would have been REQUIRED to respect the mother’s wishes.
This woman wasn’t merely unconscious, she was a member of a vulnerable economic class and was rendered even more vulnerable by having no family members to speak for her. And because of her profound vulnerability the authors had no compunction in ignoring what she might want.
And she made it clear what she wanted when she regained consciousness:
The mother in our case made the decision to stop breastfeeding due to nipple pain and engorged breasts… The mother then became engorged when she declined pumping due to nipple pain. She required multiple interventions to prevent mastitis…
Even now the authors – engaged in massive self-deception — fail to understand that their behavior was profoundly unethical.
Our case discusses the decision to initiate pumping for a comatose mother using biomedical ethical principles: (1) beneficence (breastfeeding is likely be good for the infant and mother); (2) nonmaleficence (breastfeeding might cause undue stress for a critically ill mother: there are risks of complications); (3) patient autonomy (preserving the choice to lactate preserved the mother’s ability to self-determination and avoidance of provider assumptions and bias); and (4) justice (attending to biopsychosocial features of the care, including potential biases, to promote a fair decision-making process). We believe beneficence, nonmaleficence, and justice may be met while preserving patient autonomy best by initiating pumping for comatose mothers.
But forcing a woman to breastfeed does NOT respect patient autonomy. Moreover, justice requires treating this poor homeless woman exactly the way they would have treated a well-educated, well-off woman who had a supportive family. I doubt they would have dared to substitute their judgment for hers had they thought she had the ability to hold them to account for what they did — using the fact that she was unconscious to force her to breastfeed.
Doing this to someone who is unconscious is akin to sexual assault or rape. It is horrible that a supposed medical professional would exhibit such behavior and try to call it ethical.
The gold standard in this case should be infant formula. If the baby was a micro-preemie then the gold standard should be screened pastureized donor milk.
This was a case study, like this is what we should be doing when a woman is unconscious? Like somehow they thought that in addition to head injury, broken leg and major abdominal surgery this woman needs to deal with pain of engorgement, nipple pain and risk of mastitis in her life?
They should be charged with assault, probably sexual assault. This is beyond belief. And what on earth is a lactation medicine physician?
Like….by their own case study, they failed miserably.
Doing good – Using breast milk only feeds reduces NEC by half in micro preemies with diminishing returns as the preemie gets older. The risk is nearly the same as a term infant regardless of feeding method at 34 weeks gestation – so if that was a huge worry due to uncertain dates the NICU could certainly provide donor milk for a week or even two until the baby was over the 35 week date mark. Physical benefits for the mother – none. Mental benefits – unknown due to lack of information about the mother’s choice.
Doing no harm – Breastfeeding is a large physical demand on an ill woman. (Ask me how I know.) Pumping requires being able to move around to wash parts of a pump and store breast milk. The process for storing breast milk requires being able to use or freeze milk within 24 hours. A head injury – even a relatively minor one – can greatly reduce a person’s ability to do multi-part directions. (Ask me how I know). A history of homelessness and a broken leg increase the chances that pumping would be substantially harder than average for the woman. Re-establishing lactation in a woman with four previous pregnancies is tricky, but more possible than a first-time mother. Suppressing lactation after establishment is often uncomfortable and can lead to complications.
Patient ability to make choices – Pt is unconscious – but how much effort was made to find family or people she lives with? Was any effort made to contact the medical provider(s) she saw most often rather than deciding to have the decision made by a “lactation medicine” doctor who has never met the patient? How long did ICU doctors believe the patient was going to be unconscious? Could a neutral ground be chosen where lactation was neither promoted nor suppressed in case the patient awoke within 3-4 days?
Justice – Is the risk of harm to the patient greater than the risk of possible disappointment if lactation is suppressed to the point that she is unable to breastfeed later? Can a lactation medicine physician be free of bias towards promoting lactation?
After emergency surgery and being awake for three days, I was continually woken up every ninety minutes to BF. Sometimes I would drift off and the nurses would just prop me up. Mothers are treated like less than human after childbirth, it is so disturbing.
My son was born at 26 weeks after I developed severe rapid onset pre-e with HELLP syndrome. I had a completely uncomplicated CS 28 hours after the diagnosis – but physically I was wrecked from HELLP syndrome due to anemia and various other organs having been not working well for a week or so before my son was born. I also developed/continued postpartum pre-eclampsia that was highly resistant to the standard drug choices and was kept hospitalized because my blood pressure was routinely in the 180-200/85-90 range.
Spawn was in the NICU. A lactation consultant came to see me and told me that it was critical for my son’s health that I pump every 2 hours around the clock for the first two weeks.
Between being sick, on lots of drugs (including magnesium sulfate), and all of the emotions of having a micro-preemie, the LC’s insistence that my son’s health depended on my breast milk caused me to nearly lose my mind.
I was exhausted – but trying to recover while pumping every 2 hours was making me sicker rather than healthier.
One night, I was absolutely knackered – but I was trying to stay awake for two more hours to pump one more time. I asked my husband (who was a dairy farmer) what I should do. He sat down at the end of the hospital bed and asked me a question. If he had had a dairy cow who had severe milk fever and he told the milkers to push the cow to get milked immediately instead of giving her a few days to rest before starting milking, what would I do? I stopped crying, started laughing and said “Call animal welfare on you while divorcing you for animal cruelty.” I sniffled and told him I was going to bed.
I never pumped every 2 hours – and yet I was the only first-time micropreemie mom who was still pumping 4 months later. My milk came in slowly over 10 weeks. I never reached enough production to feed a newborn – but that’s probably because I gave birth 14 weeks early and my breasts were as unready for lactation as my son was for being born.
The Spawn is four and a half now. He’s walking independently a bit and is rapidly catching up in speech and fine motor skills. He’s absolutely adorable – and he’s mostly made of chicken nuggets and crackers.
Thank you for sharing this, I’m crying. How could they treat you this way, if you had had any other surgery you would have been cared for so much more gently. I wish there was some sort of lobby for birthing moms to advocate for us and fight for consequences when we are abused.
So pleased your baby is doing well. He sounds like a real delight.
At least for me, the rest of the medical staff was amazing; it was just the fact that one phrase said by the LC kept playing and playing in my mind.
Thankfully, my mom had pumped for my twin and I as sick preemies a few decades before and my husband was a dairy farmer. I realized after I talked with my husband that the two of them knew much, much more about lactation in mammals who had severely shortened pregnancies than the lactation consultant who gave me a bunch of printed materials for term moms. (Hint: “think of your baby” to promote letdown works if your kid is over a few pounds and looks baby-ish. My kid looked a little too much like a naked mole rat – albeit an adorable naked mole rat – for that to work for the first two months or so. I had much better luck carrying a plastic baggie that had a bit of the dish soap I used to wash my pumping equipment. My brain associated the scent of the dish soap with pumping and letdown, so having that on hand did the trick quite well.)
So thankful you guys are okay now! But sad that we have to go through all this.
I’ve said it before, Mel, there is so much we know about this stuff from the dairy industry that completely gets ignored my LCs. For example, what’s the first time lactation failure rate in dairy heifers? These animals are bred for their ability to produce milk, and there is still an inherent failure rate. Why should we expect human lactation to be better?
BTW, my brother-ln-law has gotten a pasteurizer for their farm, and so now the calves are getting pasteurized cow milk instead of milk replacer. Apparently, it is working very well, much better than when they tried unpasteurized.