“I don’t want to scare my patients.”
I hear this from obstetricians on a regular basis. And, at first, it seems caring and comforting. However, as I think about it more, it can be condescending, paternalistic, and unethical.
When we are scared, we are simply nervous or concerned about a possible poor outcome or event. Pregnant women are always scared on some level about the health of their babies. This is often seen as a good thing because it’s a motivator to make good choices and follow medical advice. For example, we regularly and easily tell women that smoking, lack of prenatal care, certain diseases, specific medications, etc can harm their baby. That information empowers women to make informed choices.
So why are providers hesitant to tell pregnant women that stillbirth can happen, that monitoring fetal movement is a way of monitoring the baby’s well-being, that they have a higher risk for stillbirth, that some concerns are identified on ultrasound, or that women who have had a poor pregnancy outcome have a higher risk of poor outcomes in future pregnancies?
I see two main differences.
First – it’s easier to make recommendations that only require the mother to change her behavior. If it is a concern that will require a change in protocol, more office visits, additional tests, and possible interventions, it becomes challenging, time consuming, and more ambiguous in terms of expected progression and outcome. These changes may also require a provider to advocate for the patient with hospitals, other health professionals, clinic staff or partners, and insurance companies.
Second – all these changes require the provider to navigate the rest of the pregnancy in a more stressful environment with fewer solid options to ensure a perfect outcome. This is very scary – to the provider. It is of course, scary to the families as well, but not any more so than concerns about folic acid and anatomical abnormalities. We address those patient fears by providing education and resources. The same should be done for providers – they aren’t scared when they have good, solid research and the support of major organizations.
The key in all of this is that we need more research into things that may ultimately help prevent many stillbirths or other poor outcomes. I absolutely believe this and haven’t found anyone who disagrees. There are certainly things we can do as families and advocates together WITH the medical community to bring awareness and funding to stillbirth research. And we should do them.
The harder answer is how to approach these challenging situations until we have the solid evidence needed. While we wait, 71 babies are stillborn in the United States every single day. To those families, waiting patiently is not an option.
A common approach is for the providers not to inform their patients of these underlying issues. They feel they are being compassionate by not making the patient worry about something ‘they can’t do anything about’. And the statistics reinforce this decision. For 159 of every 160 patients they see, this approach works great. The mother is ignorant and blissful and both mom and baby have acceptable outcomes. It’s beautiful. Until the 1 in 160 walks into the office to learn her baby’s heart has stopped beating. If you are that one parent, your life has been altered forever because you were hit by a train you didn’t even know was on the tracks.
For that family, playing the odds is not acceptable.
I am troubled by providers withholding information from patients or assuming they will get it elsewhere. Even if it isn’t good news, there is an ethical obligation to inform your patients of all you know. We may be scared to think about getting a colonoscopy, but our doctors recommended them, explain them to us, and help us create a plan based on what is learned.
I am also troubled by OBs and midwives feeling they can’t do anything about these issues. They manage risk and challenging pregnancies every day. In simple terms, they screen for problems, monitor issues that have been identified, and do all they can to support mom and baby physically until the baby is delivered or until the baby is determined to have a better chance at a full life if they are delivered rather than continue in a distressful pregnancy. On a psycho-social level, this strategy also allows the family to process the situation, make decisions, gather support, and identify resources. These acts can be invaluable during the pregnancy, but can also make a significant difference when the pregnancy is over – regardless of the outcome. Applying this management concept to more risk factors or conditions has the potential to save many babies and assist thousands of families in their emotional health. But it requires communication and full disclosure.
I also want health professionals to understand that your patients don’t expect you to be super-human. We may not like it, but we realize you may not be able to eliminate all risk or promise perfection. Sometimes the best answer in medicine is “I don’t know.” There is a level of appreciation when physicians explain to a family that they don’t have a magic wand or crystal ball. At that point, all we need is all the information you have and the ability to work with you to create a plan that makes the most sense for us. Knowing that our provider was honest with us, listened to our wishes and concerns, did all he/she could, and was on our side the entire time means so much to us regardless of the outcome.
More than ever, medicine must be a partnership between the providers and the patients. To any providers reading this – let your patients be part of the team! They have insider knowledge, they are heavily invested, and they can be your biggest ally. On an individual level, this can lead to amazing relationships that benefit everyone (even if the outcome isn’t perfect). On a bigger level, they can help encourage the research and resources you need to do even better for future patients. Knowledge empowers. Ignorance disempowers.
My hope is that obstetrics will start to address the fears of providers and let the patients help. In the mean time – sharing information is the best way to empower us all.