Diverse perspectives on death, disability, and quality of life: an exploratory study of racial differences in periviable decision-making

Edmonds, Brownsyne Tucker; Hoffman, Shelley M.; Laitano, Tatiana; Jeffries, Erin; Jager, Shannon; Kavanaugh, Karen

doi:10.1038/s41372-020-0739-5

Cited by 15 publications

(23 citation statements)

References 43 publications

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“…Additional factors that may affect differences in active treatment by race and ethnicity include structural racism, social determinants of health, and implicit bias . These factors may affect parental preferences which consequently influence neonatal treatment decisions . Clinician counseling and intervention in the periviable period may also differ by the race and ethnicity of the patient …”

Section: Discussionmentioning

confidence: 99%

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Trends in Active Treatment of Live-born Neonates Between 22 Weeks 0 Days and 25 Weeks 6 Days by Gestational Age and Maternal Race and Ethnicity in the US, 2014 to 2020

Venkatesh

Lynch

Costantine

et al. 2022

JAMA

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ImportanceBirth in the periviable period between 22 weeks 0 days and 25 weeks 6 days’ gestation is a major source of neonatal morbidity and mortality, and the decision to initiate active life-saving treatment is challenging.ObjectiveTo assess whether the frequency of active treatment among live-born neonates in the periviable period has changed over time and whether active treatment differed by gestational age at birth and race and ethnicity.Design, Setting, and ParticipantsSerial cross-sectional descriptive study using National Center for Health Statistics natality data from 2014 to 2020 for 61 908 singleton live births without clinical anomalies between 22 weeks 0 days and 25 weeks 6 days in the US.ExposuresYear of delivery, gestational age at birth, and race and ethnicity of the pregnant individual, stratified as non-Hispanic Asian/Pacific Islander, non-Hispanic Black, Hispanic/Latina, and non-Hispanic White.Main Outcomes and MeasuresActive treatment, determined by whether there was an attempt to treat the neonate and defined as a composite of surfactant therapy, immediate assisted ventilation at birth, assisted ventilation more than 6 hours in duration, and/or antibiotic therapy. Frequencies, mean annual percent change (APC), and adjusted risk ratios (aRRs) were estimated.ResultsOf 26 986 716 live births, 61 908 (0.2%) were periviable live births included in this study: 5% were Asian/Pacific Islander, 37% Black, 24% Hispanic, and 34% White; and 14% were born at 22 weeks, 21% at 23 weeks, 30% at 24 weeks, and 34% at 25 weeks. Fifty-two percent of neonates received active treatment. From 2014 to 2020, the overall frequency (mean APC per year) of active treatment increased significantly (3.9% [95% CI, 3.0% to 4.9%]), as well as among all racial and ethnic subgroups (Asian/Pacific Islander: 3.4% [95% CI, 0.8% to 6.0%]); Black: 4.7% [95% CI, 3.4% to 5.9%]; Hispanic: 4.7% [95% CI, 3.4% to 5.9%]; and White: 3.1% [95% CI, 1.1% to 4.4%]) and among each gestational age range (22 weeks: 14.4% [95% CI, 11.1% to 17.7%] and 25 weeks: 2.9% [95% CI, 1.5% to 4.2%]). Compared with neonates born to White individuals (57.0%), neonates born to Asian/Pacific Islander (46.2%; risk difference [RD], −10.81 [95% CI, −12.75 to −8.88]; aRR, 0.82 [95% CI, [0.79-0.86]), Black (51.6%; RD, −5.42 [95% CI, −6.36 to −4.50]; aRR, 0.90 [95% CI, 0.89 to 0.92]), and Hispanic (48.0%; RD, −9.03 [95% CI, −10.07 to −7.99]; aRR, 0.83 [95% CI, 0.81 to 0.85]) individuals were significantly less likely to receive active treatment.Conclusions and RelevanceFrom 2014 to 2020 in the US, the frequency of active treatment among neonates born alive between 22 weeks 0 days and 25 weeks 6 days significantly increased, and there were differences in rates of active treatment by race and ethnicity.

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Section: Discussionmentioning

confidence: 99%

“…35 These factors may affect parental preferences which consequently influence neonatal treatment decisions. 36 Clinician counseling and intervention in the periviable period may also differ by the race and ethnicity of the patient. 37…”

Section: Discussionmentioning

confidence: 99%

Trends in Active Treatment of Live-born Neonates Between 22 Weeks 0 Days and 25 Weeks 6 Days by Gestational Age and Maternal Race and Ethnicity in the US, 2014 to 2020

Venkatesh

Lynch

Costantine

et al. 2022

JAMA

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“…A personalized decision-making model of counseling is superior to a paternalistic model where physicians make all the decisions, or a GA-based plan in which the specific characteristics of the pregnancy and fetus are not considered. 10, 14, 24-27 During the study period, our institutional policy regarding steroids was GA-based with the goal being to administer steroids at 22 +5 weeks GA, in anticipation of neonatal resuscitation at 23 weeks GA. Gestational age based policies are especially problematic due to the imprecision of pregnancy dating methods. 28, 29 Moreover, there are factors that influence survival other than GA. 30-32 A preferable approach would be a joint meeting including the obstetrician, neonatologist, and parents, to discuss the risks and benefits of maternal treatment and neonatal resuscitation, and derive a mutually agreed upon plan that is specifically tailored to the parents’ needs and preferences.…”

Section: Discussionmentioning

confidence: 99%

If We Treat Them, They May Live: A Single Center’s Experience with Treating Neonates Born at 22 Weeks of Gestation

Akpan

Tumin

Moore

2022

Journal of Neonatology

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Objective To describe a single center’s experience with the management of neonates born at 22 weeks of gestation. Study Design Retrospective review of 18 neonates born alive at 22 weeks GA to 16 mothers (cohort included 2 sets of twins) from January 2017 to December 2020, and admitted to a level IV Neonatal Intensive Care Unit. Data on antenatal management was collected from maternal charts. Results Nine mothers delivered due to preterm labor, 5 due to preterm pre-labor rupture of membranes with intra-amniotic infection, and 2 after antepartum hemorrhage. Fourteen mothers received antenatal counseling, 75% received antenatal steroids (25% received a full course), and 31% delivered via caesarean section in honor of parental wishes. All the neonates were actively resuscitated, with 5 surviving to discharge (28%). All survivors had at least 1 morbidity at discharge. None of the infants who underwent extensive resuscitation including chest compressions, epinephrine administration, or volume expansion survived to discharge. Conclusions Adequate antenatal counseling with personalized decision-making consistent with parental desires is the preferred approach at the limits of viability. Although not evident in this study, antenatal interventions such as corticosteroids may improve outcomes and should be considered for families who desire neonatal resuscitation at 22 weeks.

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“…Several papers discussed parents' reliance on spirituality, faith and religion to make the decision to initiate intensive care treatment. 20,21,24,27,29,30,33 Parents believed the decision should be left to God'. 20,21 Faith helped them to maintain hope 20 and not give up, despite the risks.…”

Section: Religion and Spiritual Beliefsmentioning

confidence: 99%

A scoping review of parental values during prenatal decisions about treatment options after extremely premature birth

Boer

Vries

Berken³

et al. 2023

Acta Paediatrica

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Parents need to be involved in prenatal decisions about neonatal treatment if their baby is likely to be born extremely premature -in the so-called grey zone, which is between 22 and 26 weeks of gestation, depending on time, country and culture. [1][2][3] The two treatment options in this grey zone are intensive care and comfort care.Intensive care treatment comes with great uncertainty regarding the outcome: some infants will not survive, some will go through life with one or more disabilities, and others will grow up without any problems. 4 As decisions in the grey zone are value laden, 5 a shared decisionmaking approach is recommended. [6][7][8][9] This involves mutual recognition of the need for a decision, followed by a discussion of the treatment options with their pros and cons, as well as an exploration of the parental values to be incorporated. 10,11 This exploration, known as values clarification, will allow treatment decisions to be aligned with personal goals and circumstances. 12 When a prenatal

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Diverse perspectives on death, disability, and quality of life: an exploratory study of racial differences in periviable decision-making

Cited by 15 publications

References 43 publications

Trends in Active Treatment of Live-born Neonates Between 22 Weeks 0 Days and 25 Weeks 6 Days by Gestational Age and Maternal Race and Ethnicity in the US, 2014 to 2020

Trends in Active Treatment of Live-born Neonates Between 22 Weeks 0 Days and 25 Weeks 6 Days by Gestational Age and Maternal Race and Ethnicity in the US, 2014 to 2020

If We Treat Them, They May Live: A Single Center’s Experience with Treating Neonates Born at 22 Weeks of Gestation

A scoping review of parental values during prenatal decisions about treatment options after extremely premature birth

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