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Clinical Consultations: How Do We Handle Conflicts with Parents over Unsafe Oral Feedings?
Situation: S, an 11-year-old girl who experienced significant brain injury 6 years earlier from a near drowning, is admitted to an inpatient rehabilitation hospital after hip surgery. The goal for this current admission is to improve her ability to sit, supported with adaptive seating. She currently functions at the 1–2 month level, is nonambulatory, nonverbal, and cortically blind. For several years, she has been unable to take any food or fluid orally without choking. Although she has a gastrostomy tube in place, her mother feeds her pureed foods at home with a spoon or eye dropper. It usually takes more than an hour for S to ingest 8 ounces. Despite S’s recent hospitalizations for aspiration pneumonia, the mother asks that her daughter be fed by mouth while she is hospitalized. The treatment team has discussed the consequences of oral feeding (aspiration, pneumonia, possible death) and prefers not to give S oral feedings, but her mother believes that her daughter finds pleasure in tasting food and in being fed orally. She believes her daughter has few pleasures in life, and it is worth the risk to provide some small pleasures. The nurses and nursing assistants are uncomfortable feeding S orally. They think oral feedings are both painful and harmful to S. They also believe that if S aspirates and develops pneumonia, or has a respiratory arrest, they would feel responsible.
Consultation: Teresa A. Savage, PhD RN, replies:
In the important events and rituals of our lives, such as birthdays, weddings, and holidays, food often plays a vital part. Sharing food or feeding another person represent the bond between people. Thorne, Radford, and Armstrong (1997) found that some mothers of children with long-term gastrostomy tubes continued to provide oral feedings despite the safety risks for a number of reasons. The mothers wanted to preserve the parental act of feeding, and they thought the oral stimulation brought some pleasure to their children. One mother was quoted as saying, “When I start feeding him, and he knows it’s coming, his mouth is just a-smacking, and it’s great” (Thorne, Radford, & Armstrong, p. e8). It is important to acknowledge the meaning of oral feedings to S’s mother—the retention of some normalcy in their lives through the act of feeding and the pleasures associated with feeding. It is equally important to acknowledge the distress experienced by the nurses and nursing assistants in complying with the mother’s request
It helps our discussion to clarify everyone’s understanding of the facts as we know them. First, what does the literature say about oral feedings in children with gastrostomy tubes? Children with acquired brain injury usually require enteral feedings. As they recover, assessment is done to determine when oral feedings can be reintroduced (Savage, Klingbeil, & Fawber, 2004, p. 536). Manikam and Perman (2000) found that 26%–90% of children with neurological deficits had severe feedings problems, and enteral feedings are necessary. They recommend that oral feedings, even when just for taste, be continued if safe (emphasis added).
A study from the United Kingdom estimated that 90% of children with severe motor impairment and 97% with severe speech impairment had feeding difficulties (Sullivan et al., 2000, p. 674). They also reported a significantly increased incidence of chest infections in children who experience choking and swallowing difficulties. These children averaged 3 hours per day to feed; the presence of choking and the length of time to feed made meal time very stressful for caregivers. Less stress was reported by caregivers of children who were fed by gastrostomy tube, and this method of feeding was not associated with “excess morbidity” (Sullivan et al., p. 679). Taniguchi and Moyer (1994) found that children with traumatic brain injury (TBI) were at lower risk for pneumonia than children with other brain injuries; however, they attributed their findings to the shorter duration of dysphagia associated with recovery of swallowing and feeding abilities after tBI versus the continuing and unimproving dysphagia in children with chronic neurologic disorders, which S exhibits.
It is important to ascertain the answers to the following questions before proceeding with a feeding strategy:
If the answers are “yes,” then the following questions need to be asked:
The answers to these questions can guide a feeding decision. The middle ground might be that while in the hospital, S can be given food to taste, but not enough to swallow. However, even a taste of food could increase secretions and provoke aspiration, therefore, this option should be evaluated carefully.
The discussion with S’s mother should reflect her deep love and concern for her daughter and her tenacity and vigilance in advocating for her daughter. There may be other pleasures that the mother can provide for S that can take the place of oral feedings. Gentle rocking, soft fabric rubbed over the skin, massages, or soothing music or aromas are examples of pleasurable, safe experiences S’s mother can provide to her. S’s mother also should understand that certain actions by the nursing staff compromise their ethics, and that they should not be asked to participate in those activities.
The treatment plan should be mutually agreed upon and should not deteriorate into a power struggle between the mother and nursing staff. Seeking consultation from experts in pediatric feeding, such as pediatric speech pathologists, pediatric otolaryngologists or gastroenterologists, or pediatric dieticians may be helpful. If all attempts to resolve the conflict between the mother and nursing staff fail, the other options are to transfer S to another facility of the mother’s choosing, or as an extreme alternative, involve child protection services if the team, as mandated reporters, believes the child is at imminent risk of harm. Parental autonomy is not absolute; the nursing staff should not permit abuse of a child.
In summary, the ultimate goals are to provide nourishment to S while maintaining the critical interaction between mother and child, preserving the integrity of the nursing staff, and forging an alliance between the mother and the treatment team.
Thank you to Glenn Paustian, MA, CCC-SLP, for his thoughtful review of this manuscript.
Teresa A. Savage is associate director of the Center for the Study of Disability Ethics, Rehabilitation Institute of Chicago, Chicago, IL. Address correspondence to her at the Rehabilitation Institute of Chicago, 345 E. Superior St., Room 1375, Chicago, IL 60611, or via e-mail to firstname.lastname@example.org
Manikam, R., Perman, J.A. (2000). Pediatric feeding disorders. Journal of Clinical Gastroenterology, 30(1), 34–46.
Savage R.C., Klingbeil, F.T., and Fawber, H.L. (2004). Life care planning for the child with acquired brain injury. In S. Riddick-Grisham (Ed.). Pediatric lifecare planning and case management (pp. 529–551). Boca Raton, FL: CRC Press.
Sullivan, P.B., Lambert B., Rose, M., Ford-Adams, M., Johnson, A., & Griffiths, P. (2000). Prevalence and severity of feeding and nutritional problems in children with neurological impairment: Oxford feeding study. Developmental Medicine & Child Neurology, 42, 674–680.
Taniguchi, M.H., & Moyer, R.S. (1994). Assessment of risk factors for pneumonia in dysphagic children: Significance of videofluoroscopic swallowing evaluation. Developmental Medicine and Child Neurology, 36, 495–502.
Thorne, S.E., Radford, M.J., & Armstrong, E-A. (1997). Long-term gastrostomy in children: Caregiver coping. Gastroenterology Nursing, 20(2), 46–53.