When Advocacy Becomes Health-System Outsourcing

An in-home nurse sat across from me five days after I gave birth, took my blood pressure, watched the numbers read 149/90, and told me everything looked fine. I had no idea the reading was concerning. If a nurse friend hadn’t urged me to call my obstetrician, I might not have survived. Two days later, I was readmitted to the hospital with postpartum preeclampsia, a potentially life-threatening condition that can lead to stroke, organ damage, or death. I had read my discharge paperwork and knew the warning signs. But I didn’t have any obvious warning signs.

I was, by any reasonable definition, an informed and engaged patient, yet a trained clinician stood in my living room and missed what was happening. She said she only needed to call the office at 150; at the hospital, I learned that 140 should have prompted action.

More information about how to advocate for myself would not have changed what happened. I had the education; what failed was the monitoring and communication. My blood pressure was taken, but a concerning reading was neither acted on nor explained as something that required attention. My experience exposed a larger problem in maternal health care. Promoted by health care and public health campaigns, self-advocacy can empower mothers. But it can also mask failures in monitoring, communication, and follow-through.

That wasn’t the end of my postpartum experience with the health care system. At my six-week checkup, my postpartum depression and anxiety went undiagnosed and I wasn’t screened again. It took roughly six months before I finally got help. This time, the gap wasn’t what I knew. It was what happened, or didn’t happen, when I tried to get answers and appropriate care. I didn’t need another lesson in self-advocacy. I needed continued opportunities for assessment and a clearer path to care.

Patient empowerment and system accountability are not competing ideas.

Self-advocacy has become standard language in maternity care. Know the warning signs, ask questions, speak up when something feels wrong, seek another opinion, follow up on referrals, and find appropriate care. Public health campaigns, hospital discharge packets, postpartum apps, and books all reinforce some version of that message. When mothers are repeatedly told to “trust their gut,” the message can sound empowering while shifting responsibility away from the health care system to the mother.

What sounds like encouragement can also become an expectation that mothers carry the burden of recognizing when something is wrong and getting what they need, despite the many barriers that may stand in the way of appropriate care. Each recommendation can help women, but taken together, they raise a larger public health question: How much responsibility can we transfer to mothers before self-advocacy begins compensating for failures in care?

The American College of Obstetricians and Gynecologists has called for postpartum care to become an ongoing process rather than a single encounter and has acknowledged that it is often fragmented. Fragmentation can leave mothers responsible for connecting pieces of care themselves. We have built an extraordinary amount of maternal-health messaging around a premise that a woman who is days removed from childbirth, recovering physically, deprived of sleep, and caring for a newborn should function as the final failsafe of the health care system.

‘Advocate for yourself’ cannot be America’s answer to every maternal-health gap.

A warning-sign checklist is useful, but it cannot substitute for clinical monitoring. A better system would make responsibility explicit. An abnormal finding should trigger a defined next step and identify who is responsible for following it. A mental-health screen should not end when the questionnaire is completed. A positive result should lead to assessment, clear communication, connection to appropriate care, and confirmation that the connection occurred. A referral should not be considered successful because it was placed. Health systems need processes to determine whether that connection occurred, so they don’t mistake an action for an outcome.

The distinction between actions and outcomes is consequential after childbirth. According to the Centers for Disease Control and Prevention, nearly 68% of pregnancy-related deaths occur from one day to one year after delivery. Meanwhile, a new mother is managing feeding, medications, appointments, symptoms, and identity shifts while also trying to determine which clinician is responsible for a new symptom or whether a referral that went nowhere is hers to chase.

None of this means self-advocacy is the problem. Patient empowerment and system accountability are not competing ideas. Mothers should have the information they need to recognize concerns, participate in decisions, and seek help. But self-advocacy should be an additional layer of protection within the health care system, not a substitute for the system’s responsibility to provide care.

“Advocate for yourself” cannot be America’s answer to every maternal-health gap. Empowerment should give mothers greater agency within a functioning system of care, not greater responsibility for making that system function.