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!
