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When a pregnant woman declines recommended treatment or requests treatment that her care provider does not support, tension can arise.
The patient may even feel disrespected or mistreated, according to a study in the journal PLOS ONE.
“Our relationships with our patients are an integral part in helping someone heal,” said principal investigator Mimi Niles, PhD, MPH, an assistant professor of nursing at New York University Rory Meyers College of Nursing in New York City. “Although we think of a good relationship as separate or incidental, it is actually the center of everything. How we, as providers, interact, communicate, engage and support decision-making is how we can assist people's autonomy in their health. That relationship is not a fringe benefit. It has to be the beating heart of the care.”
The study is part of the larger, foundational study, Changing Childbirth in British Columbia (Vancouver, Canada), which evaluated women’s experiences and preferences for care, access to care and their knowledge of maternity care options.
“Our research is an analysis of the reported experiences of those women that declined aspects of their maternity care,” Niles told Contemporary OB/GYN®.
The analysis of 1,540 written accounts from 1,123 service users declining or refusing care options throughout childbearing among 2,100 childbearing women in British Columbia who participated in the online survey in 2014 revealed 4 major themes: contentious interactions, including women “fighting” for the right to refuse a procedure/intervention; knowledge as control or as power, such as providers being keepers of medical knowledge or clients feeling knowledgeable about procedures/interventions; morbid threats from the provider like “Do you want your baby to die?”; and compliance being valued by providers.
“I am not surprised by any of the results,” said Niles, who also is a licensed midwife at Woodhull Medical Center/ NYC Health + Hospitals in Brooklyn. “Providers in health care systems are trained to encourage obedience. They are not trained in how to respond when a patient declines.”
Niles said how the discussion is framed -- "patient non-compliant' or "patient refuses" – unfairly pits patients against providers’ recommendations.
Providers reacting with disregard, hostility, coercion or abandonment when a patient declines some portion of their care “can have serious consequences,” Niles said. “Patients lose trust, they avoid future care, they suffer from anxiety and at times suffer from post-traumatic stress disorder (PTSD) triggered by their clinical interactions. New mothers should not be leaving their maternity care feeling broken or harmed. They should feel safe, supported and respected.”
Providers also need support, as well as education and ongoing training, in communicating and interacting with their patients, according to Niles. “We are taught that challenging our management means the patient is being difficult,” she said. “The reality, though, is declining care is part of a patient’s rights. We, as providers, need to be more agile in these situations.”
By providers demonstrating concern and culturally respectful communication, “healthcare encounters will improve,” Niles said. “Having power over our patients may cloud our ability to center their autonomy.”
In the future, Niles envisions that patient respect and patient autonomy will become markers of clinical excellence. “This shift in honoring someone's full experience of care will change how we structure our time and our investments,” she said. “But these values need to be built into the system, so they do not become minimized or neglected. How we provide care is just as important as what care we provide.”
Niles reports no relevant financial disclosures.
Niles PM, Stoll K, Wang JJ, et al. “I fought my entire way”: experiences of declining maternity care services in British Columbia. PLOS ONE. Publisher online June 4, 2021. doi:org/10.1371/journal.pone.0252645