ABSTRACT
OBJECTIVE: The objective of this study is to determine how neonatologists and bioethicists conceptualize and apply the Best Interests Standard (BIS). STUDY DESIGN: Members of the American Society for Bioethics and Humanities and the American Academy of Pediatrics Section on Neonatal-Perinatal Medicine were surveyed to determine how they conceptualized the BIS and ranked the appropriateness of forgoing life-sustaining therapy (LST). RESULTS: Neonatologists' median response supported an infant-specific BIS conceptualization that linked the infant's and family's interests. They did not support allowing limitations on the family's obligations. Ethicists' supported a conceptualization that linked the infant's and family's interests and limitations on the family's obligations, a less infant-specific conceptualization. Ethicists were less or equally likely to agree with forgoing LST in seven of eight cases. CONCLUSIONS: Ethicists endorsed a conceptualization of the BIS that includes the effects on the family and rejected an infant-specific one. Neonatologists split between these two and rejected limiting the family's obligations. Critical appraisal of the BIS is needed in neonatal ethics.
Subject(s)
Attitude of Health Personnel , Decision Making/ethics , Ethicists , Euthanasia, Passive/ethics , Neonatologists , Abnormalities, Multiple/therapy , Adult , Aged , Aged, 80 and over , Bioethical Issues , Family/psychology , Female , Humans , Infant , Infant, Newborn , Male , Middle Aged , Practice Patterns, Physicians' , Statistics, Nonparametric , Surveys and Questionnaires , United StatesABSTRACT
OBJECTIVE: Provide an evidence base for counseling parents of high-risk neonates about the biopsychosocial impact of providing long-term care. STUDY DESIGN: A review of the effects of long-term care on families of high-risk neonates. Our search was limited to 1993-2010. We used the terms 'long-term care,' 'family,' 'neonate' and 'technology dependence.' Results were organized based on Engel's biopsychosocial model. RESULT: Physical-parental caregivers reported more health problems, had fewer health-promoting behaviors and lower vitality.Psychological-parental caregivers had higher rates of post-traumatic stress disorder and depressive symptoms, although some improved with time. Siblings reported greater stress and depression. Social-parental caregivers achieved fewer years of education, higher unemployment and lower incomes. Couples reported greater family strain. The effect on divorce was mixed. Siblings reported disruption in their academic and social lives. CONCLUSION: Providing long-term care involves biopsychosocial risks. Counseling of parents should identify them and advocate strategies for prevention.
