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  1.  10
    Living in the Hospital: The Vulnerability of Children with Chronic Critical Illness.Carrie M. Henderson, Jessica C. Raisanen, Miriam C. Shapiro, Pamela K. Donohue, Renee D. Boss & Alexandra R. Ruth - 2020 - Journal of Clinical Ethics 31 (4):340-352.
    The number of children with chronic critical illness (CCI) is a growing population in the United States. A defining characteristic of this population is a prolonged hospital stay. Our study assessed the proportion of pediatric patients with chronic critical illness in U.S. hospitals at a specific point in time, and identified a subset of children whose hospital stay lasted for months to years. The potential harms of a prolonged hospitalization for children with CCI, which include over treatment, infection, disruption of (...)
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  2.  18
    Conflicts in Learning to Care for Critically Ill Newborns: “It Makes Me Question My Own Morals”.Renee D. Boss, Gail Geller & Pamela K. Donohue - 2015 - Journal of Bioethical Inquiry 12 (3):437-448.
    Caring for critically ill and dying patients often triggers both professional and personal growth for physician trainees. In pediatrics, the neonatal intensive care unit is among the most distressing settings for trainees. We used longitudinal narrative writing to gain insight into how physician trainees are challenged by and make sense of repetitive, ongoing conflicts experienced as part of caring for very sick and dying babies. The study took place in a 45-bed, university-based NICU in an urban setting in the United (...)
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  3.  9
    Medically Complex Children in Foster Care: Do Research “Protections” Make This “Vulnerable Population” More Vulnerable?Renee D. Boss, Erin P. Williams, Megan Kasimatis Singleton & Rebecca R. Seltzer - 2018 - Journal of Clinical Ethics 29 (2):145-149.
    Children in foster care are considered a “vulnerable population” in clinical care and research, with good reason. These children face multiple medical, psychological, and social risks that obligate the child welfare and healthcare systems to protect them from further harms. An unintended consequence of the “vulnerable population” designation for children in foster care is that it may impose barriers on tracking and studying their health that creates gaps in knowledge that are key to their receipt of medical care and good (...)
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  4.  6
    Medical Decision Making for Medically Complex Children in Foster Care: Who Knows the Child’s Best Interests?Renee D. Boss, Rachel A. B. Dodge & Rebecca R. Seltzer - 2018 - Journal of Clinical Ethics 29 (2):139-144.
    Approximately one in 10 children in foster care are medically complex and require intensive medical supervision, frequent hospitalization, and difficult medical decision making. Some of these children are in foster care because their parents cannot care for their medical needs; other parents are responsible for their child’s medical needs due to abuse or neglect. In either case, there can be uncertainty about the role that a child’s biological parents should play in making serious medical decisions. Here we highlight some of (...)
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  5. Where do families turn? Ethical dilemmas in the care of chronically critically Ill children.Johnson Pang, Lora Batson, Kathryn Detwiler, Mattea E. Miller, Dörte Thorndike, Renee D. Boss & Miriam C. Shapiro - forthcoming - Monash Bioethics Review:1-8.
    Advancements in early diagnosis and novel treatments for children with complex and chronic needs have improved their chances of survival. But many survive with complex medical needs and ongoing medical management in the setting of prognostic uncertainty. Their medical care relies more and more on preference-sensitive decisions, requiring medical team and family engagement in ethically challenging situations. Many families are unprepared as they face these ethical challenges and struggle to access relevant ethical resources. In this paper, Timmy’s narrative, situated in (...)
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