Pediatric Chronic Critical Illness Research & Ethics

Supporting parents and clinicians as they care for children with multi-system disease, dependence on medical technology and frequent/prolonged hospitalizations

The Pediatric Chronic Critical Illness Research & Ethics Program addresses issues related to medical decision-making, family experiences, long-term placement options, palliative care, and end-of-life care for children with chronic critical illness (CCI). This work arises from the increased number of children with CCI and their unique care needs. Children with CCI, their families, and their providers do not receive all of the supports that they need to thrive, both inside and outside of the hospital.

This research program engages with leaders in medicine, bioethics, and public health to expand the evidence-base for novel approaches to care for children with CCI and their loved ones.

If you are interested in this work and wonder how you can become involved with researchers at other centers, consider joining the Pediatric Chronic Critical Illness Collaborative.

Current Projects

Past Projects

Contributing Berman Institute Members

Selected Publications

Defining Pediatric Chronic Critical Illness for Clinical Care, Research, and Policy

• Shapiro MC, Henderson CM, Hutton N, Boss RD.  Defining Pediatric Chronic Critical Illness for Clinical Care, Research, and Policy. Hosp Pediatrics 2017;7(4):236-244

Inpatient Impact of Pediatric Chronic Critical Illness

• Rogozinski L, Young A, Grybauskas C, Donohue PK, Boss RD, Biondi E. Point Prevalence of Children Hospitalized with Chronic Critical Illness on the General Inpatient Units. Hosp Ped 2019;9(7):545-49.
• Boss RD, Henderson CM, Weiss EM, Falck A, Madrigal V, Shapiro MC, Williams EP, Donohue PK on behalf of the Pediatric Chronic Critical Illness Collaborative. The Changing Landscape in Pediatric Hospitals: A multicenter study of how pediatric chronic critical illness impacts NICU throughput. Am J Perinat 2020
• Boss RD, Williams EP, Henderson CM, Seltzer RR, Shapiro MC, Hahn E, Hutton N. Pediatric Chronic Critical Illness: Reducing Excess Hospitalizations. Hosp Ped 2017; hpeds.2016-0185
• Henderson CM, Williams EP, Shapiro MC, Hahn E, Wright-Sexton L, Hutton N, Boss RD. “Stuck in the ICU”: Caring for Children with Chronic Critical Illness. Ped Crit Care Med 2017;18(11):e561-e568.
• Marcus KL, Henderson CM, Boss RD. Chronic Critical Illness in Infants and Children: A Speculative Synthesis on Adapting ICU Care to Meet the Needs of Long-Stay Patients. Ped Crit Care Med 2016. 17(8): 743-52.
• Troch R, Schwartz J, Boss RD. Slow and Steady: A Systematic Review of ICU Care Models Relevant to Pediatric Chronic Critical Illness. J Ped Intens Care 2020; 9(4):233-40.

Home Care for Children with Pediatric Chronic Critical Illness

• Fratantoni K, Raisanen J, Boss RD, Miller J, Detwiler K, Huff S, Neubauer K, Donohue PK. The Process of Pediatric Home Health Care Services: Perspectives of those who prescribe, provide, and receive care. Pediatrics 2019;Sept 144(3):e20190897.
• Boss RD, Raisanen J, Detwiler K, Fratantoni K, Huff S, Neubauer K, Donohue PK. The Lived Experience of Pediatric Home Health Care for Children with Medical Complexity and their Parents. Clin Pediatrics 2020;59(2):178 63.

Family Experience of Pediatric Chronic Critical Illness

• Donohue PK, Williams EP, Wright-Sexton L, Boss RD. “It’s Relentless”—Providers’ Experience of Pediatric Chronic Critical Illness. J Pall Med 2018;21(7):940-946.
• Boss RD, Henderson CM, Raisanen JC, Jabre JA, Shipman K, Wilfond BS. Family Experiences Deciding For and Against Pediatric Home Ventilation. J Pediatrics 2020; Feb;229:223-231.
• Barone A, Boss RD, Raisanen JC, Shepard J, Donohue PK. Our Life at Home: Photos from families inform discharge planning for medically complex children. Birth 2020;47(3):278-89.-87.

Clinician Impact of Pediatric Chronic Critical Illness

• Shapiro M, Donohue PK, Kudchadkar SN, Hutton N, Boss RD. Professional Responsibility, Consensus and Conflict: A Survey of Physician Decisions for the Chronically Critically Ill in Neonatal and Pediatric Intensive Care Units. Ped Crit Care Med 2017;18(9):e415-e422.
• Hirschfeld R, Barone S, Johnson E, Boss RD. Pediatric Chronic Critical Illness: Gaps in Inpatient Intrateam Communication.  Ped Crit Care Med 2019;20(21):e546-555.
• Boss RD, Hirschfeld R, Barone S, Johnson E, Arnold R. Pediatric Chronic Critical Illness: Training teams to address the communication challenges of patients with repeated and prolonged hospitalizations. J Pain Symp Manage 2020;60(5):959-67.

Ethical challenges related to Pediatric Chronic Critical Illness

• Boss RD, Falck A, Goloff N, Hutton N, Miles A, Shapiro M, Weiss E, Donohue P on behalf of the Pediatric Chronic Critical Illness Collaborative. Low prevalence of palliative care and ethics consultations for children with chronic critical illness. Acta Ped 2018;107(10):1832-1833.
• Ruth A, Boss RD, Donohue P, Shapiro M, Raisanen J, Henderson CM. Living in the Hospital: The Vulnerability of Children with Chronic Critical Illness. J Clin Ethics 2020;31(4):340-352.
• Seltzer R, Singleton M, Boss RD. Children with Medical Complexity in Foster Care: Do Research “Protections” Make this “Vulnerable Population” More Vulnerable? Jour Clin Ethics 2018;29(2):145-49.
• Miles A, Rushton CR, Wise B, Boss RD. Pediatric Chronic Critical Illness, Prolonged ICU Admissions, and Clinician Distress. J Ped Intens Care 2021