Parent resuscitation preferences for young people with severe developmental disabilities.


Parent resuscitation preferences for young people with severe developmental disabilities.


Friedman SL


Journal Of The American Medical Directors Association




Child; Female; Humans; Male; Adult; Attitude to Health; Choice Behavior; Massachusetts; Program Evaluation; Analysis of Variance; Organizational Policy; adolescent; Preschool; retrospective studies; Parents/education/psychology; DNAR; Attitude to Health; Developmental Disabilities/th [Therapy]; Health Education/og [Organization & Administration]; Parents; Resuscitation Orders/px [Psychology]; Advance Care Planning/og [Organization & Administration]; Advance Care Planning/organization & administration; Consent Forms; Developmental Disabilities/co [Complications]; Developmental Disabilities/complications/therapy; documentation; Health Education/organization & administration; Parents/ed [Education]; Parents/px [Psychology]; Resuscitation Orders/psychology; Skilled Nursing Facilities/og [Organization & Administration]; Skilled Nursing Facilities/organization & administration; Treatment Refusal/psychology; Treatment Refusal/px [Psychology]


OBJECTIVE: To determine the relationship of providing explanatory information regarding resuscitation to DNR status for parents and guardians of young people who reside in a pediatric skilled nursing facility., DESIGN: Retrospective, quasi-experimental study of policy change, with each individual serving as his or her own control. Interval comparisons were made between resuscitation choices before and after information was provided to families. For those who were originally in the full resuscitation group, comparisons were also made between those who changed to DNR and those who did not., SETTING: Pediatric skilled nursing facility in Massachusetts., PARTICIPANTS: Sixty individuals with severe mental retardation and complex medical problems, between the ages of approximately 2 and 32 years., MEASUREMENTS: Review of records regarding resuscitation choices and changes, with each person serving as his or her own control. Both univariate and multivariate analyses were performed on individuals who were in the full resuscitation group at the initiation of the study to determine distinguishing characteristics between those who remained in that group from those who changed to DNR., RESULTS: The families of 11 (18%) of 60 patients had requested DNR orders prior to requirement of written preference for resuscitation or DNR in the event of cardiopulmonary arrest. After provision of informative material, there was an increase to 26 patients (43%) who were designated DNR (P < . 001). There was no significant difference in characteristics between the groups that changed to DNR and those that remained full resuscitation, although there was a marginal trend of children in the group with an acquired etiology for their developmental disabilities were more apt to have their resuscitation status changed than those with congenital diagnoses (P = .053)., CONCLUSION: When families are provided with explanatory information regarding resuscitation in a nonacute, pediatric skilled nursing home setting, there is a significant increase in request for DNR.


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Friedman SL, “Parent resuscitation preferences for young people with severe developmental disabilities.,” Pediatric Palliative Care Library, accessed September 26, 2023,