The right to informed consent and refusal is a human right. And importantly, it is a human right in childbirth.
What is the Right to Informed Consent and Refusal?
The right to informed consent and refusal is a fundamental healthcare right. It is grounded in the right of every human being to autonomy and authority over their own body. Every human being has the right to control when and how other people may touch their body.
In the context of maternal healthcare, this right means that every woman can choose to accept or reject any and all interventions presented to her, after being provided with evidence-based information, advice, and support from her healthcare providers. Informed consent and refusal means that, despite the expertise that doctors, midwives and nurses have to offer healthcare support, the power to make the decisions about care rests in the women they serve. Under the universal healthcare right of informed consent and refusal, providers’ education and experience gives them only the legal authority to offer their services, to make recommendations to women that they can decline or accept, and to support and respect their patients’ decisions.
As mentioned- the right to informed consent is also a right to evidence-based care. This means women have the right to be given recommendations from doctors based on evidence and at the very least, women need to be informed when recommendations are being made that don’t have basis in evidence but are instead grounded in routine practice or belief.
Right now in India, the maternity care culture typically puts healthcare providers, opposed to the mother, in the position to make decisions regarding care during the perinatal period. Because of this, we are actually seeing a lot of violations in human rights. Women receive interventions, treatments, and undergo procedures without giving meaningful consent on the basis of accurate information, or without being asked at all. While some women may be complacent, this sort of care can drastically effect the woman, her baby, the birthing process and even postpartum adjustment.
She is pregnant, and still human
As founder of Human Rights in Childbirth Hermine Hayes Klein puts it, “By observing informed consent and refusal, we acknowledge where a healthcare practitioner’s responsibility ends, and the women’s human rights begin.” This distinction is important and highlights what it really means to respect women.
The support that healthcare providers offer women needs to maintain that the woman is still human and is ordained the same rights she had before she was pregnant. By observing the right to informed consent and refusal, we maintain that the woman is no less of a person just because she is pregnant.
In an effort to try to have the best outcomes from a pregnancy and to reduce infant and maternal mortality rates, it can’t at the expense of the human rights. It can not be at the expense that women lose autonomy and dignity and suddenly anyone can touch, look at, inject, cut, or restrain her body without her meaningful consent. When we uphold the human right’s women have, we dignify them with control of what happens to their bodies. By observing informed consent and refusal, we respect and empower women.
Why should decisions be in her hands?
Why is it important that the mother makes decisions regarding her care, rather than a healthcare provider making them for her? Why is it necessary to respect the right to refuse medical treatment? Simply put- it’s because the mother is actually the person in the best position to make decisions, granted she has been adequately and unbiasedly counseled by her healthcare providers.
This is because the mother has the biggest stake in the experience and outcome of birth, bigger than the healthcare providers, bigger than anyone. Sometimes, because of their circumstance and the systems they work in, it’s a challenge for healthcare providers to really 100% of the time make decisions that only factor in the mother/baby’s wellbeing. Sometimes they just want to get home, sometimes they are tired and overworked, sometimes they have just met the mother, sometimes they are motivated by profit, sometimes, they just want childbirth to be quick and easy!
Individual circumstances and healthcare systems can at times alter the motivations and investment of some healthcare providers. But regardless of that, what all healthcare providers, in any condition, place, or time, also have in common with each other is that none of them are the mother. They simply can’t have the same level of stake in women’s care because it’s not happening to them. This has nothing to do with being a doctor or midwife or nurse or the circumstances they are in, it is the simple fact that all the decisions made regarding the women’s care, the process of childbirth and the outcomes 100% affect HER and her baby. No amount of concern, compassion or respect can amount to the stake the mother has for herself.
It’s not all black and white
The right to informed consent recognizes that 10 rational pregnant people, with similar clinical charts, might make 10 different decisions about what they need for a healthy pregnancy and birth. Decision-making in healthcare, and in childbirth in particular, is a personal process that incorporates the individual’s personal history, cultural and spiritual values, and family values, to name a few. One-size-fits-all, protocol-dictated, assembly line maternity care violates the right to informed consent and fails to promote optimal health and well-being.
A woman’s personal circumstance- her postpartum support, her future family planning, her past experience, her values, her fears- may not be reflected in her clinical chart, but they are certainly factors that will influence her decisions. There is almost never an entirely clear cut choice to make for a health benefit that is free of risk. Rather, almost every healthcare decision in immersed in complex risk/benefit analyses that is felt differently from person to person. But individual people will value benefits and fear risks differently.
This is why, some women choose to do a genetic prenatal screening test, despite a risk of miscarriage, and some don’t. Some women are willing to take the risk, because the benefit of knowing their child is developing normally (or not) strongly appeals to them. For other women, the higher risk of miscarriage deters them, with the benefit of the test not appealing to them enough take on a risk. Yet “on paper” these women will look very similar.
In light of this, how could a healthcare practitioner then really make the right choice for each of his or her patients? It’s not very easy to do! Luckily, rather than make decisions for women, healthcare providers can equip women with enough accurate, evidence-based information that she can take the responsibility to make an individual choice regarding her care that is best for her.
This isn’t to say that our healthcare providers aren’t competent. This isn’t to say that their extensive training should be disregarded. This isn’t to say that women shouldn’t seek their advice and follow their suggestions when it seems fit. But it is to say that they are limited in their abilities and that women actually need to take more responsibility for the direction of the care and healthcare providers need to encourage and respect that. The healthcare’s expertise and the woman’s personal knowledge can complement each other so that individual decisions can be made that are best for her.
The limitations of implementing informed consent and refusal
At the moment in India, systems are not devised to give the healthcare provider’s enough time to properly facilitate obtaining informed consent from women. All too often, there are too many women to see, not enough time, and not adequate rest for the healthcare support. How can a doctor really be up to explaining all that is required for a woman to make an informed decision- answer all her questions and doubts, be prepared to address any risks should she refuse medical treatment- if he or she has to see another fifteen women that day? It’s a challenge in the existing system- that’s why it needs to change.
So then, how do we really go about making practical changes to uphold women’s rights throughout her care? Attend the Human Rights in Childbirth Conference in Mumbai this February to find out!!!
See more of what Dr. Aruna Uprety has to say at the upcoming Human Rights in Childbirth Conference in Mumbai, India.
Sign this petition to make it mandatory that Indian hospitals declare their c-section rates!