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.
[pullquote align=”right” cite=”” link=”” color=”” class=”” size=””]UNshared decision making has become the standard of care in midwifery and breastfeeding support.[/pullquote]
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.
