Objective To identify sociodemographic and clinical factors associated with withholding or withdrawing life-sustaining treatment (WWLST) for extremely low gestational age neonates.
Design Observational study of prospectively collected registry data from 19 National Institute of Child Health and Human Development Neonatal Research Network centres on neonates born at 22–28 weeks gestation who died >12 hours through 120 days of age during 2011–2016. Sociodemographic and clinical factors were compared between infants who died following WWLST and without WWLST.
Results Of 1168 deaths, 67.1% occurred following WWLST. Withdrawal of assisted ventilation (97.4%) was the primary modality. WWLST rates were inversely proportional to gestational age. Life-sustaining treatment was withheld or withdrawn more often for non-Hispanic white infants than for non-Hispanic black infants (72.7% vs 60.4%; 95% CI 1.00 to 1.92) or Hispanic infants (72.7% vs 67.2%; 95% CI 1.32 to 3.72). WWLST rates varied across centres (38.6–92.6%; p<0.001). The centre with the highest rate had adjusted odds 4.89 times greater than the average (95% CI 1.18 to 20.18). The adjusted odds of WWLST were higher for infants with necrotiing enterocolitis (OR 1.77, 95% CI 1.21 to 2.59) and severe brain injury (OR 1.98, 95% CI 1.44 to 2.74).
Conclusions Among infants who died, WWLST rates varied widely across centres and were associated with gestational age, race, ethnicity, necrotiing enterocolitis, and severe brain injury. Further exploration is needed into how race, centre, and approaches to care of infants with necrotiing enterocolitis and severe brain injury influence WWLST.
- palliative care
- race and health
Data availability statement
Data reported in this paper may be requested through a data use agreement. Further details are available at https://neonatal.rti.org/index.cfm?fuseaction=DataRequest.Home.
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Collaborators We are indebted to our medical and nursing colleagues and the infants and their parents whose data we collected and analysed as part of this study. The following investigators, in addition to those listed as authors, participated in this study: NRN Steering Committee Chair: Richard A Polin, MD, Division of Neonatology, College of Physicians and Surgeons, Columbia University (2011–present). Alpert Medical School of Brown University and Women & Infants Hospital of Rhode Island (U10 HD27904) – Abbot R Laptook, MD; Martin Keszler, MD; Angelita M. Hensman, MS RNC-NIC; Elisa Vieira, RN BSN; Emilee Little, RN BSN. Case Western Reserve University, Rainbow Babies & Children's Hospital (U10 HD21364); Michele C Walsh, MD MS; Avroy A Fanaroff, MD; Anna Marie Hibbs, MD; Nancy S Newman, BA RN, Children's Mercy Hospital, University of Missouri Kansas City School of Medicine (U10 HD68284); William E Truog, MD; Eugenia K. Pallotto, MD MSCE; Cheri Gauldin, RN BS CCRC; Anne Holmes RN MSN MBA-HCM CCRC; Kathy Johnson RN, CCRC. Cincinnati Children's Hospital Medical Center, University Hospital, and Good Samaritan Hospital (U10 HD27853, UL1 TR1425); Kurt Schibler, MD; Barbara Alexander, RN; Cathy Grisby, BSN CCRC, Duke University School of Medicine, University Hospital, University of North Carolina, and Duke Regional Hospital (U10 HD40492, UL1 TR1117); Ronald N Goldberg, MD; Kimberley A Fisher, PhD FNP-BC IBCLC; Joanne Finkle, RN JD; Matthew M Laughon, MD MPH; Carl L Bose, MD; Janice Bernhardt, MS RN; Gennie Bose, RN, Emory University, Children’s Healthcare of Atlanta, Grady Memorial Hospital, and Emory University Hospital Midtown (U10 HD27851, UL1 TR454); David P Carlton, MD; Ellen C Hale, RN BS CCRC; Yvonne Loggins, RN; Diane I Bottcher, RN MSN. Eunice Kennedy Shriver National Institute of Child Health and Human Development; Rosemary D Higgins, MD; Stephanie Wilson Archer, MA. Indiana University, University Hospital, Methodist Hospital, Riley Hospital for Children, and Wishard Health Services (U10 HD27856, UL1 TR1108); Gregory M Sokol, MD; Leslie Dawn Wilson, BSN CCRC; Dianne E Herron, RN CCRC; Susan Gunn, NNP CCRC; Lucy Smiley CCRC, McGovern Medical School at The University of Texas Health Science Center at Houston, Children's Memorial Hermann Hospital, and Memorial Hermann Southwest (UG1 HD87229, U10 HD21373); Kathleen A Kennedy, MD MPH; Jon E Tyson, MD MPH; Julie Arldt-McAlister, RN BSN; Katrina Burson, RN BSN; Allison G Dempsey, PhD; Patricia W Evans, MD; M Layne Lillie, RN BSN; Karen Martin, RN; Sara C Martin, RN; Georgia E McDavid, RN; Shawna Rodgers, RN; M Layne Lillie, RN, BSN; Patti L Pierce Tate, RCP; Sharon L Wright, MT (ASCP). Nationwide Children’s Hospital and the Ohio State University Medical Center (U10 HD68278); Leif D Nelin, MD; Sudarshan R Jadcherla, MD; Pablo J Sánchez, MD; Christine A Fortney, PhD RN; Ruth Seabrook, MD; Patricia Luzader, RN; Nehal A Parikh, MD, RTI International (U10 HD36790); Dennis Wallace, PhD; Marie G Gantz, PhD; Jeanette O’Donnell Auman, BS; Margaret Crawford, BS; Carolyn M Petrie Huitema, MS; Kristin M Zaterka-Baxter, RN BSN. Stanford University and Lucile Packard Children's Hospital (U10 HD27880, UL1 TR1085); Krisa P Van Meurs, MD; David K Stevenson, MD; M Bethany Ball, BS CCRC; Melinda S Proud, RCP, University of Alabama at Birmingham Health System and Children’s Hospital of Alabama (U10 HD34216); Waldemar A Carlo, MD; Namasivayam Ambalavanan, MD; Monica V Collins, RN BSN MaEd; Shirley S Cosby, RN BSN. University of California - Los Angeles, Mattel Children's Hospital, Santa Monica Hospital, Los Robles Hospital and Medical Center, and Olive View Medical Center (U10 HD68270); Uday Devaskar, MD; Meena Garg, MD; Teresa Chanlaw, MPH; Rachel Geller, RN BSN. University of Iowa and Mercy Medical Center (U10 HD53109, UL1 TR442); Dan L Ellsbury, MD; Tarah T Colaizy, MD MPH; Jane E Brumbaugh, MD; Karen J Johnson, RN BSN; Jacky R Walker, RN; Donia B Campbell, RNC-NIC. University of New Mexico Health Sciences Center (U10 HD53089, UL1 TR1449); Kristi L Watterberg, MD; Robin K Ohls, MD; Conra Backstrom Lacy, RN; Sandra Sundquist Beauman, MSN RNC-NIC, University of Pennsylvania, Hospital of the University of Pennsylvania, Pennsylvania Hospital, and Children's Hospital of Philadelphia (U10 HD68244); David Munson, MD; Barbara Schmidt, MD MSc; Sara B DeMauro, MD MSCE; Aasma S Chaudhary, BS RRT; Soraya Abbasi, MD; Toni Mancini, RN BSN CCRC, University of Rochester Medical Center, Golisano Children's Hospital, and the University of Buffalo Women's and Children's Hospital of Buffalo (U10 HD68263, UL1 TR42); Carl T D’Angio, MD; Ronnie Guillet, MD PhD; Satyan Lakshminrusimha, MD; Rosemary L Jensen; Linda Reubens, RN CCRC; Anne Marie Reynolds, MD MPH; Ann Marie Scorsone, MS CCRC; Ashley Williams, MSEd; Karen Wynn, RN; Deanna Maffett, RN; Diane Prinzing; Julianne Hunn, BS; Stephanie Guilford, BS; Mary Rowan, RN; ; Michael Sacilowski, MAT CCRC; Holly IM Wadkins, MA, University of Texas Southwestern Medical Center, Parkland Health & Hospital System, and Children's Medical Center Dallas (U10 HD40689); Myra Wyckoff, MD; Pablo J Sánchez, MD; Luc P Brion, MD; Diana M Vasil, MSN BSN; Lijun Chen, PhD RN; Alicia Guzman; Lizette E Lee, RN, Wayne State University, Hutzel Women’s Hospital and Children’s Hospital of Michigan (U10 HD21385); Rebecca Bara, RN BSN; John Barks MD; Mary Christensen RT, Stephanie Wiggins MS, Diane White RT.
Contributors Dr Dworetz conceptualised and designed the study, interpreted the data, drafted the manuscript, critically reviewed the manuscript for important intellectual content, and revised the manuscript. Dr Natarajan conceptualised and designed the study, interpreted the data, drafted the initial manuscript, critically reviewed the manuscript for important intellectual content, and revised the manuscript. Mr Langer carried out the analyses, interpreted the data, contributed to drafting the initial manuscript, and revised the manuscript. Dr Shankaran and Dr Stoll made substantial contributions to conceptualisation and design of the study, contributed to drafting the initial manuscript, critically reviewed the manuscript for important intellectual content, and revised the manuscript. Ms Kinlaw, Dr Bidegain, Dr Bell, and Dr Cotten made substantial contributions to conceptualisation and design of the study, critically reviewed the manuscript for important intellectual content, and revised the manuscript. Dr James, Dr Poindexter, and Dr Kirpalani made contributions to conceptualisation and design of the study, critically reviewed and revised the manuscript. Dr Das made substantial contributions to conceptualisation and design of the study, supervised and contributed to design of the collection instruments, supervised the initial analyses, and reviewed and revised the manuscript. All authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.
Funding The National Institutes of Health and Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) (UG1 HD27904, UG1 HD21364, UG1 HD68284, UG1 HD27853, UG1 HD40492, UG1 HD27851, UG1 HD27856, UG1 HD87229, UG1 HD21373, UG1 HD68278, UG1 HD36790, UG1 HD27880, UG1 HD34216, UG1 HD68270, UG1 HD53109, UG1 HD53089, UG1 HD68244, UG1 HD68263, UG1 HD40689, UG1 HD21385) and the National Center for Advancing Translational Sciences (UL1 TR1425, UL1 TR1117, UL1 TR454, UL1 TR1108, UL1 TR1085, UL1 TR442, UL1 TR1449, UL1 TR42) provided grant support for the Neonatal Research Network. Although the National Institute of Child Health and Human Development staff did have input into the study design, conduct, analysis, and manuscript drafting, the content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. Funded by the National Institutes of Health.
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.