Archives for posts with tag: consent

American Heritage Dictionary (my personal favorite) defines treatment in a medical context as

a. The use of an agent, procedure, or regimen, such as a drug, surgery, or exercise, in an attempt to cure or mitigate a disease, condition, or injury.
b. The agent, procedure, or regimen so used.
Notice the terms cure and mitigate.
If we go back to the dictionary, cure is
a. A drug or course of medical treatment used to restore health: discovered a new cure for ulcers.
b. Restoration of health; recovery from disease: the likelihood of cure.
c. Something that corrects or relieves a harmful or disturbing situation:
and mitigate is
a. To make less severe or intense; moderate or alleviate.
Thus, we should expect that any medical treatment should make us better than we would be without it.  Yet reporting on a systematic review in JAMA,  the New York TImes recently ran a piece called “If Patients Only Knew How Often Treatments Could Harm Them.”
Perhaps in these cases, we might want to reconsider using the term “treatment.”
The JAMA review, “Patients’ Expectations of the Benefits and Harms of Treatments, Screening, and Tests,” concludes
The majority of participants overestimated intervention benefit and underestimated harm. Clinicians should discuss accurate and balanced information about intervention benefits and harms with patients, providing the opportunity to develop realistic expectations and make informed decisions.
But where are patients getting this information?  While some may see advertisements for a handful of drugs, for the most part, patients get information on “treatment” from their doctors.  A commentary on the review suggests limiting advertising and changing product labeling to be more transparent (big thumbs up from me on the second one in particular).  It also says that
[A] physician must first understand the risk herself (or himself) and must then communicate it effectively.  It is not clear that physicians do either of these things well.
Addressing OB care, the JAMA article notes that only 9% of women accurately identified the benefits of a trial of labor after cesarean (TOLAC) over an elective repeat cesarean (ERCS), and only 37% accurately identified risks of a TOLAC. Patients also incorrectly identified the benefits of a fetal abnormality scan (90% overestimated the benefits), and 57% could not accurately identify the risks of amniocentesis.
One of the original articles from the review, Trial of Labor After Repeat Cesarean: Are Patients Making an Informed Decision, states
Women in both groups [TOLAC or ERCS] were insufficiently informed about the risks and benefits of TOLAC and ERCS, particularly women in the ERCS group. Specifically, our patients were not familiar with
  • the chances of a successful TOLAC,
  • the effect of indication for previous cesarean section on success,
  • the risk of uterine rupture,
  • the increased length of recovery with ERCS versus TOLAC
  • the increased risk of maternal death, neonatal respiratory compromise, and neonatal intensive care unit admission with ERCS.

In addition, if our patient felt her provider had a preference, she was more likely to choose that mode of delivery, whereas when patients felt their providers were indifferent or if they were unaware of their providers’ preferences, 50% chose one mode and 50% chose the other.

 Note there is no indication that the women who did not feel the provider had a preference were making their own decisions based on accurate information.
Anecdotal evidence indicates that providers rarely provide accurate information–and sometime provide no information, simply saying, “Let’s schedule your cesarean.”  Some examples:
  • Jessica: I was told I need not waste my time trying to attempt a vaginal birth because it would be another long birth that would ultimately end in another section.
  • Jenerra: “I was always told by my doctors that because I had my first c-section that I would have to keep having them, even though my first c-section was the result of an induction gone wrong.”
  • Kiara: I do believe that [my primary cesarean] was the best outcome for everyone, but I knew that I didn’t want that
    experience again. When I discussed this with my OB, she said ‘Oh, we don’t do VBACs in this practice. When you get pregnant again, we’ll just schedule you like a hair appointment. Easy!’
  • Jamie: [My OB said], “You don’t want to VBAC. You don’t need to tear up your little bottom.”
The JAMA article, which is not focused on obstetric care in particular, does not address other common obstetric “treatments.” For instance, many physicians conduct ultrasounds routinely during pregnancy.  A friend of mine said her doctor never measured her fundal height, instead conducting an ultrasound at every appointment, even though there is no indication that having ANY ultrasounds improves pregnancy outcomes.   Other “treatments” for which women may not be adequately informed of benefits and risks include elective inductions,  Pitocin augmentation, and episiotomies, along with any number of other “treatments” offered in prenatal care, labor, and childbirth.
Women often believe they have no say in these procedures at all, as they are often presented as something that is going to occur rather than a choice that the woman can make.  Unfortunately, though ACOG offers excellent guidelines on informed consent, in practice informed consent is rarely more than a women signing a form that she has no time to read, and informed refusal is never on the table at all.  In fact some recent cases have indicated that in some cases doctors override a woman’s informed refusal, as in the case of Rinat Dray’s forced cesarean and Kelly X’s forced episiotomy.
The New York Times report on the JAMA review states:
This study, and others, indicate that patients would opt for less care if they had more information about what they may gain or risk with treatment. Shared decision-making in which there is an open patient-physician dialogue about benefits and harms, often augmented with use of treatment decision aids, like videos, would help patients get that information.
Unfortunately, shared decision making operates as a buzz phrase rather than a practice most of the time.  Perhaps this uninformed approach to “treatment” is why Marinah Valenzuela Farrell, a certified professional midwife, and president of the Midwives Alliance of North America notes in the New York Times series “Is Home Birth Ever a Safe Choice?” that hospitals carry their own risks.
They just don’t inform you about them.

There is some debate in the blogosphere about whether or not women should care about anything in their birth experience other than a healthy baby.

You can read posts that indicate that a healthy baby should be privileged to the exclusion of other concerns here (read the responses), here, and here.

While it appears that people say “all that matters is a healthy baby” to women all the time, not as many want to go public with that sentiment.  Women who have been told that “all that matters is a healthy baby,” however, have some feelings about that idea, and so do advocates for women.  You can read posts that indicate that there are important things to value in birth in addition to a healthy baby herehere, here, here, here, here, here, here, and here.  If you google “healthy baby all that matters,” you can get more than 4 million other responses.

The statement that “all that matters is a healthy baby” dehumanizes women and suggests that they are nothing more than a conduit for birth.  While nearly all birthing women want nothing more than a healthy baby, it is disingenuous to imply that women cannot have healthy babies and be treated with dignity and have their own health valued at the same time.  And if a woman has an unhealthy baby, the woman’s health is still important.  The White Ribbon Alliance advocates for respectful maternity care as a human right.

respectful maternity care

view a larger version of the poster here

The WRA points out that violations of these rights happens in rich countries and poor countries and that women remember their childbirth experiences for a lifetime.  A healthy baby is very, very important.  So is a healthy mother–and mental health is as important as physical health to a woman’s ability to care for herself AND a newborn after birth.

 

Update: For information and analysis of the Rinat Dray forced cesarean case, see VBAC vs. Forced Cesarean: Facts, Opinion, and Informed Consent

On Facebook today, the organization Improving Birth posted this question:

What happens when a mom plans a VBAC with a fully supportive doctor, but then at birth gets an unsupportive doctor who refuses to “perform” a VBAC? Do you think the provider is “forced” to attend a vaginal birth, or is the woman “forced” to have surgery?

I approached this question in my post on rights, so let’s explore it.

Let’s look at the doctor’s side first:

The doctor wants to perform surgery on a woman who doesn’t want surgery.  Her original doctor says it is safe for her to forego the surgery.  Professional guidelines say that forgoing the surgery is perfectly fine as long as some basic conditions are met (and let’s assume they are, since the first doctor agreed the surgery was not necessary and the doctor in question appears not to have reassessed the situation).  Essentially, the doctor is arguing that is is the doctor’s personal preference to perform the surgery, and that the pregnant woman is forcing the doctor not to perform unnecessary surgery.

By this logic, I am forced not to perform surgery on people all day every day.  I am also forced not to do all kinds of other things to them, even if I feel like it.  Even if I am qualified to do things to people, I am “forced” not to do them.  No one has ever let me perform CPR or the Heimlich maneuver or a substance abuse treatment intervention on them just because I felt like it.  And I am qualified to do all of those things and have nifty certificates to prove it.

The doctor feels “forced” to attend a vaginal birth.  But this doctor does not have to ignore practice guidelines.  The doctor does not have to practice obstetrics.  The doctor does not even have to be a doctor.  This doctor could quit and go home.  This doctor could probably even decide to be “sick” and some other doctor would be found.

As for the woman:

She chose a doctor who agreed with standard practice guidelines indicating that she did not need surgery.

Another doctor showed up who apparently wanted to perform surgery whether it was needed or not.

If the doctor refuses to provide care for a vaginal birth, and there is not other doctor available, what choices are available to the woman?  Will the labor and delivery nurses assist her birth?  Can the woman deliver unassisted in the hospital?  Can she leave without signing AMA papers (as she was only refusing the advice of one doctor, but not the advice of her original doctor or of the hospital or of professional guidelines)?  Is there any qualified birth attendant available who can assist?

The woman cannot decide not to be pregnant.  She cannot decide that she will not go into labor and give birth.  She cannot get someone else to do these things for her.  If she goes home, they will still happen.

Is the woman’s choice compromising her life and health and that of her baby by either having an unattended birth or having an unnecessary surgery?  In such a case, it appears that she is forced to make  a bad decision, no matter what she chooses.

The commenters on Improving Birth’s question are champions of the autonomy and agency of women.  Here are a few of their comments–I recommend liking Improving Birth’s page on Facebook:

I think the provider should do his job, or find someone that can. As a mom has a right to decline any procedure that is not medically needed. At that time just because the doctor doesn’t want to do a vbac, does not make a csection medical needed.

Her body, her decision!

What happens when a patient with a cancer diagnosis needs to be seen by another doctor for a day? Or a patient with diabetes? Or someone who is getting occupational therapy for intellectual disability? When the regular provider is temporarily unavailable and a certain treatment plan or protocol has been worked on, all reasonable accommodations should be made to keep to that plan. On-call doctors should not get to say they will not help a mom planning on VBAC continue with her and her primary doctor’s plan.

I don’t think I would want a doctor at my birth who was “forced” to be there. But neither should a woman be “forced” to have unwanted surgery (whether it’s “necessary” or not!). The hospital I believe has an obligation to provide the care that a woman wants – if this doctor is unwilling to attend a vbac then the hospital should be finding one who IS willing to attend. Here in Australia the woman wouldn’t have a doctor there anyhow, unless something went wrong – it would just be midwives.

We have years of case law that competent people can refuse care, and it is an EMTALA violation to deny care to a woman in active labor, even if she is refusing surgery.

Doctors don’t “preform” a VBAC, mother’s give birth. This should not even be an issue, it is sad that it is.

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