Refusal to Permit Medical Treatment and the Power of Person-Centered Care

A 34-year-old G1P0 (gravida 1 para 0 – first pregnancy, no prior deliveries) arrives at her local hospital at 41 weeks gestation for routine antenatal testing. The patient is a recent immigrant to the US from a remote African village. While she speaks English as a second language, she does so fluently.

She comes in on the dayshift for a nonstress test (NST). She has had an uneventful prenatal course and has no risk factors other than being post-dates (overdue).

The NST is non-reactive so an ultrasound for Biophysical Profile (BPP) is ordered. The resulting BPP score is 4/10. This, combined with the fetal heartrate tracing, indicates that the baby would not tolerate labor.

The obstetrician on call, busy with patients in the clinic, asks the nurse to tell the patient that she needs a cesarean section. The patient, having only ever seen a nurse practitioner in the clinic, has never met this obstetrician or this nurse. After discussion with the nurse, the patient refuses the cesarean section.

The obstetrician is called and told that the patient refuses the cesarean section. He has not had lunch and has a repeat cesarean birth scheduled at 12:30 p.m. for another patient, and the clinic resumes promptly at 2:00 p.m. He has a very full afternoon clinic schedule with patients double-booked. He enters the patient’s room at 12:20 p.m. and has a brief conversation with the patient regarding the risks of refusing a cesarean section. The conversation goes badly and the patient is now in tears, still refusing the cesarean section. The obstetrician leaves the room, proceeds with his scheduled case, then returns to the clinic.

Later during shift change, the oncoming evening shift nurse is given report that the patient is refusing a cesarean section that is likely life-saving for the baby. The evening nurse assesses the patient and suspects that a lack of trust in the provider is causing the patient to refuse care. The evening shift nurse spends the next six hours establishing a therapeutic relationship with the patient. The patient subsequently consents to the cesarean section and gives birth to a healthy baby boy.

It is easy to see the many places where things could have been better: the provider was over-burdened, the dayshift nurse had to discuss the need for major surgery without the benefit of the obstetrician providing informed consent, and the patient had no relationship with the obstetrician on call. One can sympathize with the patient, and understand why she refused life-saving care even though, given the harm that will come to the infant, the refusal is hard to accept.

Fortunately, as the patient was not yet in labor, there was time to make things right. The evening shift nurse had the benefit of a fresh perspective. She could see how busy the unit had been on the day shift, she knew that the obstetrician had been extremely busy in the clinic, and she saw that her patient was terrified. By placing the patient, her family, and her unborn son at the center of the conversation and then actively listening to what the patient had to say, the nurse was able to help the patient work through her fear. This is the real power of the person-centered care movement and every member of the care team must realize that the key to saving a patient’s life may not be a drug or a surgery. It may be as simple as placing the power of choice directly in the patient’s hands and then listening to what they have to say.   

Principles of Health Care Ethics

  • Autonomy: Respect patients’ rights to make decisions about themselves.
  • Beneficence: Provide care that maximizes the benefit to patients.
  • Non-maleficence: Protect patients from harm.
  • Justice: Provide equitable access to resources and respect morally acceptable laws.

Most textbooks and articles written on the principles of ethics in health care discuss autonomy, along with beneficence, justice and non-maleficence. While sometimes considered to be hierarchical and potentially in conflict with each other, these four ethical principles should be more aptly described as inextricably tied together. Many discussions of health care ethics mention that failing to respect the autonomy of a competent patient in the name of justice, beneficence or non-maleficence may violate the very principles the clinician is trying to uphold. For example, if a clinician chooses a well-meaning, but paternalistic approach to care, he or she may actually do harm to patients as justice, beneficence and non-maleficence unmoderated by a respect for personal autonomy are nether beneficial nor harmless.

In the case described above, it appeared to be impossible to simultaneously honor autonomy for the mother (refuse cesarean birth) and non-maleficence for the baby (avoid labor). Apparent conflicts between these principles often are reduced or eliminated if the care of the patient is approached in a thoughtful manner. This may require that the clinician put aside his or her personal beliefs and cultural biases. Understanding the patient’s point of view and improving the patient-provider relationship are important steps in this process.

The CHPSO database is an excellent source of case examples from which valuable lessons may be learned about why patients refuse medical treatment. While there may be little that can be done to change the patient’s mind, particularly in the setting of strongly held cultural or religious beliefs, clinicians’ actions may unwittingly contribute to the patient’s refusal of medical treatment. It is as simple as taking the time to connect with the patient to truly understand his or her perspective.

References and Resources

Alden, D. L., Friend, J., Schapira, M., & Stiggelbout, A. (2014). Cultural targeting and tailoring of shared decision making technology: a theoretical framework for improving the effectiveness of patient decision aids in culturally diverse groups. Social Science & Medicine, 105, 1-8.

Barry, M. J., & Edgman-Levitan, S. (2012). Shared decision making—the pinnacle of patient-centered care. New England Journal of Medicine, 366(9), 780-781.

D’Arrigo, Terri. “Look for reasons patients refuse advice.” February 2014. ACP Internist. Patient Communication Web. 20 July 2018.

Minkoff, H., & Paltrow, L. M. (2007). Obstetricians and the rights of pregnant women. Women’s Health, 3(3), 315-319.

Shay, L. A., & Lafata, J. E. (2015). Where is the evidence? A systematic review of shared decision making and patient outcomes. Medical Decision Making, 35(1), 114-131.

Summers, J., & Morrison, E. (2009). Principles of health care ethics. Health Care Ethics. 2nd ed. Sudbury: Jones and Bartlett Publishers, 41-58.

Ten Cate, O., Hart, D., Ankel, F., Busari, J., Englander, R., Glasgow, N., … & Touchie, C. (2016). Entrustment decision making in clinical training. Academic Medicine, 91(2), 191-198.