I was lucky to do my internship and residency at the first hospital to have a Patient’s Bill of Rights, Harvard’s Beth Israel Hospital.
The Patient’s Bill of Rights was based on the belief that doctors and nurses owed patients MORE than merely excellent treatment; they owed them compassionate and ethical care. It reflected the change from a paternalistic mindset — doctor knows best — to one that recognized patients as individuals entitled to complete information and capable of making decisions for themselves.
[pullquote align=”right” cite=”” link=”” color=”” class=”” size=””]Nothing about me without me![/pullquote]
It seems to me that we are now in need of a Birthing Person’s Bill of Rights. Those who provide maternity care owe patients more than just excellent medical treatment; we owe them compassionate care that meets their goals, not ours. We must give up the maternalistic mindset — natural childbirth advocates and lactation consultants know best — for one that recognizes patients as individuals whose priorities may be different from those of professionals.
Here’s a first attempt.
Nothing about me without me.
That should be the guiding principle of maternity care. The patient is the “decider” NOT the professionals. Sure professionals know more about the science, but we don’t know enough about the competing pressures in an individual’s life to tell her how she must give birth and feed her baby.
As the paper Shared decision is the only outcome that matters when it comes to evaluating evidence-based practice explains:
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.
In other words, even if a treatment is 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 stick to be used to beat patients into conformity.
VBAC activists may not know it, but they rely upon this insight in arguing for greater access to VBACs. Just because scientific evidence shows that elective repeat C-sections are safer overall for mothers and babies does not mean that all mothers should be pressured to have repeat C-sections. Individual women have different needs and priorities and those needs and priorities MUST be respected.
But the same principles tell us that even if vaginal births are safer overall, that does not mean that all birthing persons should be pressured into giving birth vaginally. Even if breastfeeding were safer overall (and that’s not clear), that does not meant that birthing persons should be pressured into breastfeeding.
We owe patients our recommendations, but we shouldn’t be forcing them to comply. Everything else follows from that principle.
Information about all birth risks not just C-section risks.
For the last 30+ years we’ve withheld vital information from birthing persons in order to convince them to do what some professionals want. We’ve eagerly offered information about the risks of C-sections, but we’ve withheld and even misrepresented information about the risks of vaginal birth. That has resulted in women grievously harmed by vaginal birth (prolapsed organs, incontinence, sexual dysfunction). Forceps deliveries dramatically increase the risks of these injuries yet we’ve represented instrumented vaginal deliveries as “better” than C-sections, thereby depriving women of the opportunity to make an informed choice between them.
Birthing persons are entitled to ALL relevant information about the risks of ALL possible choices.
The right to excellent pain relief.
Effective pain relief in labor is a human right, no different from the right to have effective pain relief for a broken bone.
Natural childbirth advocates often euphemize labor as “pain with a purpose,” but the pain from a broken bone is “pain with a purpose,” too. The purpose is to keep the limb or other body part immobilized. But just as casting has addressed evolutionary issue, access to medical assistance has addressed the evolutionary purpose of labor pain. There is NO benefit to pain itself and that’s why effective pain relief is a human right.
Of course some people need less pain relief than others. Some people need only ibuprofen for the pain of a broken bone while others might require something stronger. Some women need only support for labor pain, while others might require an epidural. NO ONE should ever deny or deliberately delay an epidural to a laboring woman.
Freedom from C-section & breastfeeding targets.
Targets exist for the benefit of institutions and insurers, NOT patients and, as such, should never determine the care of an individual.
Furthermore, according to Goodhart’s Law.
When a measure becomes a target, it ceases to be a good measure.
Campbell’s Law, a corollary of Goodhart’s Law, is equally instructive:
The more any quantitative social indicator is used for social decision-making, the more subject it will be to corruption pressures and the more apt it will be to distort and corrupt the social processes it is intended to monitor.
In other words, targets result in patients being pressured into choices that are best for institutions not best for patients. C-section targets are used to pressure women into vaginal births they might not want; induction targets are used to pressure women into longer pregnancies that have higher risks; breastfeeding targets are used to deprive women of choice in infant feeding.
The right to a well baby nursery.
No hospitalized patient should ever be forced to care for another hospitalized patient. If a person who has given birth needs to be in the hospital, BY DEFINITION that person is not healthy enough, strong enough or well rested enough to be fully responsible for a hospitalized baby. Therefore, there is a MEDICAL need for well baby nurseries in every hospital and a right of all birthing persons to send their babies to the nursery so they can rest and recover.
This is not rocket science, yet we have allowed lactivist organizations to do away with common sense for the purpose of promoting breastfeeding. Even worse, there is no evidence that pressuring women in this way increases breastfeeding rates.
The right to non-ideological care.
Ideologies of birth and infant feeding have no place in compassionate maternity care, just as they have no place in compassionate gynecological care. It is not up to a provider to decide whether or not a woman “needs” birth control or pregnancy termination; it is up to the individual patient. Similarly, it is not up to a provider to decide whether a birthing person “needs” an epidural, a C-section on maternal request, a pacifier to soothe a baby or formula to supplement; it is up to the individual patient.
The right to freely choose a baby’s feeding method.
It is not a providers job to determine how a baby should be fed; it is a parent’s job. We must give women accurate information — including information about the RISKS of breastfeeding — so they can make informed decisions. Support for breastfeeding should be provided ONLY on request; women are entitled to make feeding choices free from provider pressure.
The right to psychologically sensitive care.
Care that promotes provider objectives and targets ahead of patient preferences is not psychologically sensitive care. Indeed, it is often perceived by patients as pressure, shaming and humiliation. Instead of offering one-size-fits-all directives — reduce interventions, prevent C-sections, promote breastfeeding — providers are ethically obligated to determine an individual patient’s needs, desires and obligations and provide care responsive to that individual.
The sad reality is that we need a Birthing Person’s Bill of Rights now, more than ever. Ideology has been allowed to invade hospitals; scientific evidence that applies to populations has been used to justify treatment of individuals; and birthing persons have been denied accurate evidence and therefore been impeded from making informed decisions. That has got to stop.
Let The Birthing Person’s Bill of Rights be the first step toward more compassionate care!
Finally! We agree! ❤️❤️❤️ Treat women like people!
Let me add that I was very relieved to discover this blog after Googling “alternatives to epidural” after a discussion with a friend who was close to her due date, and being appalled at what I found out there.
So my question is, for someone who has no ideological aversion to a medicated birth but would prefer to at least try pain management techniques that do not involve a needle in the spine prior to consenting to an epidural, are you aware of any good classes or other resources to learn breathing techniques, etc. without having to be surrounded by, or giving money to, crazy anti-feminist shove-breastfeeding-down-throat woo woo types?
I’m not sure if this is helpful, but my older kid was born via an unmedicated vaginal birth (by choice, as I also wanted to skip the needle in my spine if I could and didn’t like the idea of not feeling something that my body was doing*), and I ultimately skipped out on any classes because everything seemed full of woo. The labour hurt, for sure, but I didn’t feel like I needed any special techniques to cope. I know I found it more comfortable to be sitting up or standing (I tried to lie down at the beginning stage, before we headed to the hospital, but that was actually the only thing that seemed unbearably painful). Otherwise, I just tried to keep breathing evenly the way I would on a run (again, not necessarily helpful to anyone else, although I’m a very casual runner, not a marathoner!). You may not need specific training for labour.
*my second kid was born via C-section and watching a nurse moving my leg out of a position I had no idea it was in was really weird.
I dont know of any that arent woo filled. There was one medicine when I had my first that my OB gave me I think it was Demerol but I could be wrong. It was early in my 24 hr (back labor) about 6 hrs before I got the epidural. This IV med does not take the pain away but it makes you not care that you are in pain. After he gave me that I did not care about the pain I felt and I was even able to get a few hours of sleep after getting it. You may want to consider this as an option if you dont want to get an epidural.
I think it was Demerol but I am not sure so if I am wrong could one of the doctors here please reply with the correct name of the medication if I got that wrong.
Birthing center I’m planning to give birth in has nitrous oxide available. NO has been used in Europe since last century with varying success. My family members who have used NO for dental procedures rave about it, so I’m planning to try it. With my last kid I had to be induced, and had a very good experience with epidural, but experienced drop in BP and shakes. So this time if I don’t have to get induced or get CS, I think I might try NO first (it doesn’t hurt to try).
Did they use NO only for their dentistry , or NO with a local anesthetic?
I found a tens machine somewhat helpful in the early stages.
This is a great post, as usual. I especially agree about the well baby nursery and how awful the BFHI initiative is.
I have a suggestion for one more item on this list: the right to an adequately staffed L&D with sufficient facilities. I think part of the reason some people turn to home birth, hire doulas, etc. is because many hospitals are understaffed and don’t have sufficient manpower to give laboring women (or any patients) enough attention or be as responsive to their needs as people would like. I’ve even read stories of hospitals being so overcrowded that women in labor were turned away or forced to wait in the waiting area for hours until a room was available. I disagree with all the crazy woo stuff out there, but I can understand why some people are unhappy with their hospital experience (this goes for any hospital encounter, not just having a baby). If hospitals had sufficient staff to provide more personalized care and explain things to patients as they are happening, there would probably be less of a market for the crazy stuff.
I completely agree with everything you’ve said here. I’m not one for woo but, after my birth experience, I can see why women never want to set foot in l & d again. I gave birth at a world renowned hospital and still had a weird and scary experience. Barely saw a doctor, distracted nurses, horrible outcomes. If I give birth again I will do it in a hospital because I know that logically it is the safe thing to do, but it will be tough for me.
OT – The second midwife in the Tully Kavanagh case has been named. Rose Pride. She currently works as a midwife in hospitals in Adelaide. During the trial recorded phone calls between Barrett and Pride were played in which both women laughed at the death of baby Tully and wished harm on his Mother. I’m not sure why she was never charged, but its about time she was named. She was also a fully trained midwife that sat there while a baby’s heart rate dropped and dropped and dropped and she KNEW he was in trouble and did nothing.
Horrendous. What a pair of psychopaths. How can this not be a murder case? Tully survived for 2 days so the midwives cannot claim that he was stillborn.
Lisa Barrett was recently found not guilty of manslaughter of the babies-the coroner came to a different conclusion (he was satisfied that her actions had led to their deaths) but the criminal case failed as the prosecution had not demonstrated her culpability beyond all reasonable doubt. It was a jury-less trial though, I wonder if a jury would have reached a different conclusion? Then again, the mother of the twin that died had originally said in the inquest that she had been warned of the increased risks to the 2nd twin by a doctor when she had been admitted to hospital earlier in the pregnancy, but still wanted to go ahead with a homebirth. By the time the criminal case was heard, she said that she hadn’t been warned of the risks and had she known, she wouldn’t have done this to her baby. I think it shows how some of these women are being brainwashed.
I remember reading the Coroner’s summation before on Lisa Barratt and her baby-murdering activities. She deliberately took herself off the midwife register and instead called herself a doula, pretending that she was no longer undertaking clinical activities with the intention that she couldn’t be found professionally responsible for poor outcomes because she wasn’t acting as a midwife. She deliberately planned this-she knew full well she was acting as a midwife, doing midwife clinical work, and charging parents for midwifery services, but tried to get rid of her liability by claiming she had only undertaken the clinical work because it was an emergency and she was acting as a good Samaritan. And Hannah Dahlen continues to support her and advocate for her, despite her being responsible for multiple infant deaths. Sisters in chains indeed-more like murdering fuckwits in chains.
I think the Coroner ruled all the babies were liveborn, not stillborn, and died within minutes of birth. And ruled that that they would all have survived had they been born in hospital. And that Barrett’s evidence was untruthful, inaccurate and unbelievable.
“recorded phone calls between Barrett and Pride were played in which both
women laughed at the death of baby Tully and wished harm on his Mother”
That is just sickening. That makes those 2 assholes not just your average regular pieces of shit. They are fucking disgusting sadistic pieces of shit.
It’s appalling that we are even having to discuss putting patients/mothers first. In the UK, we have the Human Tissue Act. That makes it a criminal offence to retain an organ from a post-mortem examination without specific written parental consent. A kidney from a miscarried fetus has more legal protection than a living mother does-if I go against the wishes of the next of kin, then I can be imprisoned for up to 2 years. But mothers wishes regarding her own pregnancy and the birth of her child can be wilfully ignored or undermined. Under the Human Tissue Act, its also a criminal offence to undertake an examination if you know that consent hasn’t been given appropriately (if the parents haven’t signed the section saying their questions have been answered). Again, potentially 2 years imprisonment for me if that happens. And yet for a midwife who wilfully tells the woman lies like ‘It’s too early to call the anesthetist,’ (until whooops-the baby is now on its way and its too late to get an epidural….), or ‘The anesthetist is too busy to come, you’ll have to manage with gas and air’ (when the anesthetist has never actually been told), or tells the mum lies about holding a comb being a perfectly decent form of pain relief, or crap about vaginal seeding and falsehoods about breast feeding, or the microbiome, or deliberately frightens the mum by lying about the importance of breast milk. It is beyond disgraceful that this needs to be addressed. Yes, fetal kidneys deserve legal protection, but maternal protection by abiding by her informed decision making is surely far more important to protect.
I think this is a great list, but might suggest a slight change to the right to freely choose feeding method: women should be asked without judgment about their plan for feeding the baby, offered support for the feeding method of their choice, and provided with resources for further support if/when they need it (whether that’s a lactation clinic, info on how to properly sterilize bottles, help to get formula, etc).
On one hand, I’m in a few mom/parent groups where participants are overwhelmingly taking a “fed is best” approach and encouraging other new mothers who are struggling to breastfeed to use formula as they need to without judgment. On the other hand, so many people are reaching out to internet randoms for advice on how to feed their babies, whether by breastmilk, formula or both, that there may be a lot of value in having hospitals that offer support/assistance for all feeding choices.
This is brilliant! There is such a gap between my first birth experience and this description. I knew there was something wrong with how I was treated but in my exhaustion I just blamed myself for not being a good mom. When the right, ethical thing to do is described here it helps me see that it wasn’t me — it was them (the BFHI hospital where I had my first baby). It’s been hard to have the words to say how I should have been treated, but Dr. Amy has done it for me here. I’m forever grateful for such an excellent advocate.