Challenges in Addressing Parents Who Care for Children With Complex Health Needs
Many parents who devote their lives to caring for their children with complex health needs believe themselves to be experts on their child’s condition.
Physicians who treat children with complex health needs face a variety of specific challenges. Many parents who devote their lives to caring for their children with complex health needs believe themselves to be experts on their child's condition, which can lead to conflict between parents and healthcare professionals over the child's needs.
A case commentary published in the AMA Journal of Ethics discussed this phenomenon, using the case of a young girl with Lennox-Gastaut syndrome, Joan, whose mother, Ms K, served as her primary caregiver.
Joan was hospitalized after repeated occurrences of pneumonia over a period of months because of difficulty swallowing. When her doctor suggested that a feeding tube be placed prior to her release from the hospital, the girl's mother resisted, insisting that she could — and had been — caring for her daughter effectively without one.
Conrad Krawiec, MD, and Benjamin Levi, MD, PhD, both of the Penn State Hersey Medical Center in Pennsylvania, noted that in this case, Joan's clinical team has 4 main responsibilities: to understand and appreciate Ms K's perspective, to engage respectfully with her while addressing needs and preferences, to share information needed to make patient-centered decisions, and to share deliberation about what is best for the patient with the patient's caregiver.
Physicians are advised against treating family members because of the way that personal feelings can affect a clinician's judgment. The clinical team should take this into account and help Ms K understand that her emotional attachment could have a negative impact on her judgment when it comes to Joan's treatment.
In working with Ms K to provide the best care for Joan, the team should also work to maintain a respectful dialogue, acknowledging her position as parent and caregiver while ensuring that Joan receives the appropriate care. Considering that Ms K was resistant to the suggested method of care, the team needs to explore the root of her “emotionally grounded belief” that Joan does not need a feeding tube because she has not needed one in the past.
In continuing to engage with the caregiver, the researchers suggest that Joan's clinical team needs to determine how best to communicate Joan's needs to Ms K and build trust regarding her daughter's continued care. The team could also consider enlisting the assistance of case managers or social workers to facilitate communication with Ms K and ensure that she understands the parameters of her responsibility. This would avoid a situation where refusal of a certain treatment would stem an issue of neglect. Because the team would be obligated to report any supposed or confirmed neglect, it could compromise any accrued trust between Ms K and the team.
Although parents caring for children with complex needs could be considered “experts” on their children's conditions, clinical teams need to be cognizant of the often difficult and complicated situations in which these caregivers find themselves. By acknowledging these complexities, communicating respectfully, and involving caregivers in important decisions and deliberations about treatment, clinical teams can build trust with caregivers and ensure that their patients receive optimal care.
Krawiec C, Levi B. How should clinicians address a parent's false belief generated by denial or grief about how to care well for a child? AMA J Ethics. 2018;20(11):E1017-E1024.