J Pediatr Intensive Care 2022; 11(04): 275-281
DOI: 10.1055/s-0041-1724098
Original Article

Pediatric Chronic Critical Illness, Prolonged ICU Admissions, and Clinician Distress

1   Division of Pediatric Critical Care Medicine, School of Medicine, Johns Hopkins University, Baltimore, Maryland, United States
2   Department of Pediatrics, Berman Institute of Bioethics, School of Nursing, School of Medicine, Johns Hopkins University, Baltimore, Maryland, United States
Brian M. Wise
3   Department of Nursing, Johns Hopkins Hospital, Baltimore, Maryland, United States
Aka Moore
4   Department of Nursing, Massachusetts General Hospital, Boston, Massachusetts, United States
Renee D. Boss
5   Division of Pediatrics, School of Medicine, Johns Hopkins University, Baltimore, Maryland, United States
› Author Affiliations


To gain an in-depth understanding of the experience of pediatric intensive care unit (PICU) clinicians caring for children with chronic critical illness (CCI), we conducted, audiotaped, and transcribed in-person interviews with PICU clinicians. We used purposive sampling to identify five PICU patients who died following long admissions, whose care generated substantial staff distress. We recruited four to six interdisciplinary clinicians per patient who had frequent clinical interactions with the patient/family for interviews. Conventional content analysis was applied to the transcripts resulting in the emergence of five themes: nonbeneficial treatment; who is driving care? Elusive goals of care, compromised personhood, and suffering. Interventions directed at increasing consensus, clarifying goals of care, developing systems allowing children with CCI to be cared for outside of the ICU, and improving communication may help to ameliorate this distress.

Publication History

Received: 24 November 2020

Accepted: 12 January 2021

Article published online:
24 February 2021

© 2021. Thieme. All rights reserved.

Georg Thieme Verlag KG
Rüdigerstraße 14, 70469 Stuttgart, Germany

  • References

  • 1 Shapiro MC, Henderson CM, Hutton N, Boss RD. Defining pediatric chronic critical illness for clinical care, research, and policy. Hosp Pediatr 2017; 7 (04) 236-244
  • 2 Burns KH, Casey PH, Lyle RE, Bird TM, Fussell JJ, Robbins JM. Increasing prevalence of medically complex children in US hospitals. Pediatrics 2010; 126 (04) 638-646
  • 3 Henderson CM, Williams EP, Shapiro MC. et al. “Stuck in the ICU”: caring for children with chronic critical illness. Pediatr Crit Care Med 2017; 18 (11) e561-e568
  • 4 Boss RD, Falck A, Goloff N. et al; Pediatric Chronic Critical Illness Collaborative. Low prevalence of palliative care and ethics consultations for children with chronic critical illness. Acta Paediatr 2018; 107 (10) 1832-1833
  • 5 Nathaniel AK. Moral reckoning in nursing. West J Nurs Res 2006; 28 (04) 419-438 , discussion 439–448
  • 6 Geoghegan S, Oulton K, Bull C, Brierley J, Peters M, Wray J. The experience of long-stay patients in the ICU: a qualitative study of parent and staff perspectives. Pediatr Crit Care Med 2016; 17 (11) e496-e501
  • 7 Geoghegan S, Oulton K, Bull C, Brierley J, Peters M, Wray J. The challenges of caring for long-stay patients in the PICU. Pediatr Crit Care Med 2016; 17 (06) e266-e271
  • 8 Donohue PK, Williams EP, Wright-Sexton L, Boss RD. “It's relentless:” providers' experience of pediatric chronic critical illness. J Palliat Med 2018; 21 (07) 940-946
  • 9 Namachivayam SP, Alexander J, Slater A. et al; Paediatric Study Group and Australian and New Zealand Intensive Care Society. Paediatric Study Group and Australian and New Zealand Intensive Care Society: five- year survival of children with chronic critical illness in Australia and New Zealand. Crit Care Med 2015; 43 (09) 1978-1985
  • 10 Marcin JP, Slonim AD, Pollack MM, Ruttimann UE. Long-stay patients in the pediatric intensive care unit. Crit Care Med 2001; 29 (03) 652-657
  • 11 Namachivayam P, Taylor A, Montague T. et al. Long-stay children in intensive care: long-term functional outcome and quality of life from a 20-yr institutional study. Pediatr Crit Care Med 2012; 13 (05) 520-528
  • 12 Naghib S, van der Starre C, Gischler SJ, Joosten KFM, Tibboel D. Mortality in very long-stay pediatric intensive care unit patients and incidence of withdrawal of treatment. Intensive Care Med 2010; 36 (01) 131-136
  • 13 Back AL, Rushton CH, Kaszniak AW, Halifax JS. “Why are we doing this?”: clinician helplessness in the face of suffering. J Palliat Med 2015; 18 (01) 26-30
  • 14 Rushton CH, Kaszniak AW, Halifax JS. A framework for understanding moral distress among palliative care clinicians. J Palliat Med 2013; 16 (09) 1074-1079
  • 15 Rushton CH, Kaszniak AW, Halifax JS. Addressing moral distress: application of a framework to palliative care practice. J Palliat Med 2013; 16 (09) 1080-1088
  • 16 Bruce CR, Miller SM, Zimmerman JL. A qualitative study exploring moral distress in the ICU team: the importance of unit functionality and intrateam dynamics. Crit Care Med 2015; 43 (04) 823-831
  • 17 Larson CP, Dryden-Palmer KD, Gibbons C, Parshuram CS. Moral distress in PICU and neonatal ICU practitioners: a cross-sectional evaluation. Pediatr Crit Care Med 2017; 18 (08) e318-e326
  • 18 Prentice T, Janvier A, Gillam L, Davis PG. Moral distress within neonatal and paediatric intensive care units: a systematic review. Arch Dis Child 2016; 101 (08) 701-708
  • 19 Schwarzkopf D, Rüddel H, Thomas-Rüddel DO. et al. Perceived non-beneficial treatment of patients, burnout, and intention to leave the job among ICU nurses and junior and senior physicians. Crit Care Med 2017; 45 (03) e265-e273
  • 20 Cardona-Morrell M, Kim J, Turner RM, Anstey M, Mitchell IA, Hillman K. Non-beneficial treatments in hospital at the end of life: a systematic review on extent of the problem. Int J Qual Health Care 2016; 28 (04) 456-469
  • 21 Kon AA, Shepard EK, Sederstrom NO. et al. Defining futile and potentially inappropriate interventions: a policy statement from the society of critical care medicine ethics committee. Crit Care Med 2016; 44 (09) 1769-1774
  • 22 Hwe C, Parrish J, Berry B, Stens O, Chang DW. Nonbeneficial intensive care: misalignments between provider assessments of benefit and use of invasive treatments. J Intensive Care Med 2019; •••: 1-7
  • 23 Sharman M, Meert KL, Sarnaik AP. What influences parents' decisions to limit or withdraw life support?. Pediatr Crit Care Med 2005; 6 (05) 513-518
  • 24 Santoro JD, Bennett M. Ethics of end of life decisions in pediatrics: a narrative review of the roles of caregivers, shared decision-making, and patient centered values. Behav Sci (Basel) 2018; 8 (05) 1-9
  • 25 Sung C, Herbst JL. The ethics of caring for hospital-dependent patients. BMC Med Ethics 2017; 18 (01) 75
  • 26 Shapiro MC, Donohue PK, Kudchadkar SR, 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. Pediatr Crit Care Med 2017; 18 (09) e415-e422
  • 27 Kaempf JW, Tomlinson M, Arduza C. et al. Medical staff guidelines for periviability pregnancy counseling and medical treatment of extremely premature infants. Pediatrics 2006; 117 (01) 22-29
  • 28 Rushton C, Kaszniak A, Halifax J. Cultivating essential capacities for moral resilience. In: Moral Resilience: transforming moral suffering in healthcare. New York: Oxford University Press; 2018: 150-182