Early in her nursing career, Dr. Luanne Linnard-Palmer was told by the mother of a four-year-old boy with sickle cell anemia that the child's chances of going to heaven had been jeopardized because he had just received a blood transfusion. The hospital had persuaded a judge to give the hospital temporary guardianship of the boy in order to give him an emergency blood transfusion. The parents had earlier refused the transfusion on the grounds that it went against their religious beliefs.
"This experience caused me - and others working with this child - such great moral stress that I just knew I needed to study this issue in order to try and understand the parent's fears," recalls Linnard-Palmer.
Linnard-Palmer's postdoctoral studies at the University of California San Francisco focused on parental refusal of traditional medical care. She also has completed two ethnographic studies and two magazine articles on religious and cultural doctrines that lead a parent to refuse medical care for an acutely ill child. Her new book When Parents Say No: Religious and Cultural Influences on Pediatric Healthcare Treatment, is published by nursing honor society Sigma Theta Tau International.
Refusal scenarios can happen weekly in large, urban hospitals, notes Linnard-Palmer. As immigration rates and urban populations grow, cultural competency and sensitivity to a variety of religious and cultural traditions is essential for caregivers—especially when parents refuse care for their children based on these beliefs. However, often the pediatric healthcare team is unprepared to handle the situation.
"Pediatric healthcare professionals are faced with an ethical, emotionally charged dilemma when treatment, even life-saving treatment, goes against the religious or cultural beliefs of a pediatric patient's family. The impact of these situations is quite profound," Linnard-Palmer says. "Healthcare professionals want to treat the child using all known technology and interventions, yet the child's parents may refuse to consent to all or part of the needed care. Few healthcare professionals know exactly what to do when a parent refuses or limits recommended treatment."
When Parents Say No presents information designed to enable healthcare and social services professionals to create favorable outcomes when faced with parental refusal situations, including how to anticipate religious or cultural healthcare conflicts, how to work with the family and clergy to favorably resolve the conflict, and when and how to initiate legal action to save the child's life. Linnard-Palmer has identified 31 religions in the United States that limit, delay, or refuse medical care.
"It is my hope that this book will help promote more respectful conversations between family members and healthcare providers," says Linnard-Palmer.
The book offers examples of diverse religious and cultural perspectives, as well as nursing, medical, and clergy viewpoints and references to state, national, and constitutional law. Linnard-Palmer also provides examples of how healthcare providers can show sensitivity to family views, even in those situations where direct legal intervention was required on behalf of children.
Providing nurses, doctors, and other healthcare professionals with access to information about religious and cultural doctrines that lead parents to refuse medical care will help the healthcare professionals better understand the pull between religious/cultural convictions and available technology, says Linnard-Palmer. This understanding could result in lower stress levels for healthcare workers and fewer explosive bedside confrontations between the healthcare team and the child's family.
"Nurses could have a greater leadership role if they apply a greater cultural knowledge to strained communications at the bedside," says Dr. Linnard-Palmer. "Nurses could minimize families' stress by demonstrating understandings of their diverse beliefs and allowing time for family members to disclose their concerns."
Not all parental treatment refusals or limitations require ethics committee or state guardianship procedures. Sometimes the parents want to have their beliefs heard and acknowledged, or they want to delay treatment so prayer sessions or cultural practices can be performed. "This suggests that each refusal episode is unique and requires individual considerations," she explains.
In cases where state mandated treatments are ordered, parents may feel confusion, stress about the loss of control, guilt about their sick child, and perhaps some relief that the decision is out of their hands. But how do the nurses feel in such situations? "Nurses who have been taught to honor family perspectives and wishes, and who have been taught that family advocacy is paramount, may feel conflicted when they are asked to participate in mandated treatment to enforce medical directives against a parent's wishes," says Linnard-Palmer.
The nurses participating in Linnard-Palmer's research have described entering into a 'storm of conflict' and emotional upheaval during the refusal scenario and its eventual resolution. "The storm was created by the intense dissonance between the views of the parents and the nurses. During this storm, nurses chose to provide care to the child and provide self-care to themselves, seeing the ethical dilemma as a real source of moral distress."
"I hope that this book will lead to a deeper understanding of the complexities of the ethical dilemma surrounding treatment refusal in pediatrics," says Linnard-Palmer.