OBJECTIVES:

We sought to examine whether sociodemographic differences, such as race and socioeconomic status, existed between patients in the PICU, pediatric cardiothoracic ICU (PCTU), and NICU who were identified as having ethical issues during interprofessional ethics rounds and all other patients admitted to these units and to characterize the primary ethical issues identified in this context.

METHODS:

We compared sociodemographic factors among patients admitted to a quaternary academic children’s hospital between January 2017 and December 2018 who were identified as having ethical issues during PICU, PCTU, and NICU interprofessional ethics rounds (n = 122) with those of all other patients admitted to these units (n = 4971). χ2 tests or Fisher’s exact tests, Mann–Whitney U tests, and a multivariable logistic regression analysis were performed.

RESULTS:

With bivariate analyses, we detected significant differences by race, insurance type, and ventilator dependence, but no significant differences between the 2 groups existed on the basis of sex, ethnicity, religion, primary language, age, or a socioeconomic status metric. After we adjusted for confounders using a multivariable logistic regression analysis, only patients who were ventilator dependent were at significantly higher odds (odds ratio = 5.78; confidence interval = 3.69–9.04; P < .001) of being identified as having ethical issues. Goals of care was the most frequent ethical issue (44%).

CONCLUSIONS:

Except for ventilator dependence, patients with ethical issues during PICU, PCTU, and NICU interprofessional ethics rounds are demographically similar to overall patients admitted in these units. Future research should be used to assess whether proactive rounds impact the timing of ethics consultation requests as well as to determine if interprofessional ethics rounds influence volume and acuity in formal ethics consultation practices.

When providing clinical ethics services, ethicists are charged with both identifying and mitigating bias and monitoring performance to provide quality care across the health care system.1  Bias toward individuals as a result of sociodemographic factors is common in health care and a reflection of the broader society.24  However, the report of such factors within proactive ethics initiatives, such as interprofessional rounding in which an ethicist participates in unit or health care team rounds, is limited.5,6  What is available is focused on formal ethics consultation within the adult population, and as such, additional assessment of proactive ethics initiatives in pediatrics is needed.713 

Although clinical ethicists draw from a shared body of knowledge and literature, no standards currently exist instructing how to implement fair and equitable ethics services.1,9  Concerns that ethics initiatives could disproportionately impact sociodemographic minority groups and unintentionally perpetuate bias at our hospital prompted us to conduct this evaluation. In studies in which proactive ethics rounding initiatives for critically ill children are described, there is no comparison of sociodemographic factors between patients identified as having ethical issues and the general population.14,15 

As a primary aim, we compared sociodemographic factors of pediatric patients identified as having ethical issues during PICU, pediatric cardiothoracic ICU (PCTU), and NICU interprofessional ethics rounds with those of all other patients admitted to these units (those discussed on rounds with no identified ethical issues and those not discussed on rounds). Consistent with other patterns in health care, we hypothesized that we would find racial and socioeconomic differences between the groups.2,3,10  As a secondary objective, we sought to characterize the ethical issues identified in this context given that proactive ethics rounding initiatives are a recent development within clinical ethics practice.5,6 

Our study took place between January 2017 and December 2018 within the PICU, PCTU, and NICU (30, 30, and 52 beds, respectively) at a quaternary academic children’s medical center. These units admit patients between 0 and 26 years old, although patients older than 26 with congenital heart conditions may be admitted to the PCTU; all patients admitted to these units, regardless of age, were included in the study. The University of Michigan Institutional Review Board (HUM00139160) deemed this study exempt from review.

In 2017, a clinical ethicist (J.F.) began participating in weekly interprofessional care team rounds designed to facilitate interprofessional team collaboration in the PICU, PCTU, and NICU. Discussions involved multiple providers in each unit, including physicians, nurses, social workers, and other ICU staff; patients and families were not present.14,15  The goal of the ethicist’s participation was to encourage routine, reflective, and early dialogue between team members to identify and respond to everyday ethical issues.14,16  Everyday ethical issues are situated in the common day-to-day interactions that arise in the provision of health care; formal ethics consultation was available on request.16,17 

Because interprofessional team members use widely variable language to describe ethical issues and have differing training and experience in identifying and responding to ethical issues, a broad understanding of ethics was used to frame the conversations during rounds rather than relying on traditional ethics language for identification of ethical issues.16,18  Patients admitted to the unit that day were discussed during rounds and identified as having ethical issues by mutual agreement from the interprofessional team and ethicist, with the ethicist interpreting and synthesizing the identified issues for the team.19  Patients with identified ethical issues were discussed in detail as a group to explore and identify actionable options for addressing the ethical issues raised. The sociodemographic makeup of health care professionals at our institution is described elsewhere.20 

We retrospectively compared patients identified as having ethical issues on PICU, PCTU, and NICU interprofessional ethics rounds (n = 122) with all other patients admitted on those units (n = 4971).

The clinical ethicist (J.F.) maintained a written record of patients identified as having ethical issues on PICU, PCTU, and NICU (55, 21, and 46 patients, respectively) interprofessional ethics rounds; the nature of those issues; and requests for formal ethics consultation. Patients were retrospectively separated into 2 groups. Group 1 consisted of patients with identified ethical issues from rounds. Group 2 consisted of patients discussed during rounds without identified ethical issues and those not discussed on rounds admitted to the PICU, PCTU, and NICU during the time of the study. Sociodemographic information was extracted for each group, including sex, race, ethnicity, religion, primary language, age, insurance type (Medicaid versus private or federal), and a socioeconomic status (SES) metric (the proportion of people with income below the poverty level for census tracts of an active patient address within the past 12 months)21  from an internal health system database program that draws directly from the medical record and US Census data. Demographic categories were predetermined within the medical record in accordance with US federal guidelines22 ; data are based on self-identification. The medical record distinguishes between race and ethnicity, and patients are limited to 1 choice in each category. Given the lack of a universal severity-of-illness scoring tool for this heterogeneous pediatric population, we included ventilator dependence at any point during the admission as a proxy for severity of illness.23 

Categorical patient characteristics or variables, such as sex, race, ethnicity, religion, primary language, ventilator dependence, and insurance, were compared by groups (ethics patients versus all other patients) by using χ2 tests or Fisher’s exact tests as appropriate. Continuous variables, such as age and the SES metric, were compared by using Mann–Whitney U tests. The multivariable logistic regression analysis was then used to test whether the significant associations of race, insurance type, and ventilator dependence (detected with bivariate analyses between patients identified as having ethical issues during interprofessional ethics rounds) persisted while adjusting or controlling for sex, ethnicity, religion, primary language, age, and an SES metric. Ethical issues were categorized and reported as the number of cases and percentage. All analyses were conducted in Stata 15 (Stata Corp, College Station, TX), and significance was set at P < .05.24 

Characteristics of patients identified as having ethical issues on PICU, PCTU, and NICU interprofessional ethics rounds (n = 122) were compared with those of all other patients admitted to those units (n = 4971) (Table 1). Significant group differences were detected by race, in which 26% of ethics patients were Black or African American versus 14.9% of all other patients, and 65% of ethics patients were white versus 76.3% of all other patients (P = .004). Furthermore, significantly more ethics patients were insured by Medicaid than all other patients (74% vs 58.4%; P < .001), and significantly more ethics patients met criteria for ventilator dependence compared with all other patients (35% vs 9.4%; P < .001). No significant differences between the 2 groups existed on the basis of sex, ethnicity, religion, primary language, age, or an SES metric. Results from the multivariable logistic analysis indicated that the group differences between race and insurance type initially detected in bivariate analyses had attenuated (Table 2). However, the association between patients who were ventilator dependent and those identified as having ethical issues on rounds persisted. Specifically, patients who were ventilator dependent were at significantly higher odds (odds ratio = 5.78; confidence interval = 3.69–9.04; P < .001) of being identified as having ethical issues during interprofessional ethics rounds than those who were not ventilator dependent, with adjustment for sex, ethnicity, religion, primary language, age, or an SES metric. For the 122 patients discussed on interprofessional ethics rounds, goals of care (44%) was the most frequent ethical issue (Table 3). Three patients had a formal ethics consultation before being discussed on interprofessional ethics rounds, and 14 patients had a formal ethics consultation after discussion on interprofessional ethics rounds.

TABLE 1

Characteristics of Patients With Ethical Issues Identified During Interprofessional Ethics Rounds (n = 122) Compared With All Other Patients Admitted to the PICU, PCTU, and NICU (n = 4971)

Ethics PatientsAll Other PatientsP
Sex, n (%)   .52 
 Male 71/122 (58) 2747/4970 (55.3) — 
 Female 51/122 (42) 2223/4970 (44.7) — 
Race, n (%)   .004 
 White 78/120 (65) 3643/4774 (76.3) — 
 Black or African American 31/120 (26) 711/4774 (14.9) — 
 Other 11/120 (9) 420/4774 (8.8) — 
Ethnicity, n (%)   .57 
 Non-Hispanic 113/121 (93) 4509/4768 (94.6) — 
 Hispanic 8/121 (7) 259/4768 (5.4) — 
Religion,an (%)   .38 
 No religion 52/109 (48) 2449/4705 (52.1) — 
 Other Christian 40/109 (37) 1386/4705 (29.5) — 
 Catholic 12/109 (11) 669/4705 (14.2) — 
 Other 5/109 (5) 201/4705 (4.3) — 
Primary language, n (%)   .80 
 English 119/122 (98) 4785/4962 (96.4) — 
 Other 3/122 (2) 177/4962 (3.6) — 
Ventilator dependence, n (%)    
 Yes 43/122 (35) 468/4971 (9.4) <.001 
Insurance, n (%)   <.001 
 Medicaid 90/121 (74) 2831/4848 (58.4) — 
 Private or federal 31/121 (26) 2017/4848 (41.6) — 
Age, y, n (%)   .32 
 <1 79/121 (65) 2755/4946 (55.7) — 
 ≥1–<18 35/121 (29) 1939/4946 (39.2) — 
 ≥18 7/121 (6) 252/4946 (5.1) — 
    
SES metric,b median (range) 0.13 (0.01–0.55) 0.11 (0–0.84) .09 
Ethics PatientsAll Other PatientsP
Sex, n (%)   .52 
 Male 71/122 (58) 2747/4970 (55.3) — 
 Female 51/122 (42) 2223/4970 (44.7) — 
Race, n (%)   .004 
 White 78/120 (65) 3643/4774 (76.3) — 
 Black or African American 31/120 (26) 711/4774 (14.9) — 
 Other 11/120 (9) 420/4774 (8.8) — 
Ethnicity, n (%)   .57 
 Non-Hispanic 113/121 (93) 4509/4768 (94.6) — 
 Hispanic 8/121 (7) 259/4768 (5.4) — 
Religion,an (%)   .38 
 No religion 52/109 (48) 2449/4705 (52.1) — 
 Other Christian 40/109 (37) 1386/4705 (29.5) — 
 Catholic 12/109 (11) 669/4705 (14.2) — 
 Other 5/109 (5) 201/4705 (4.3) — 
Primary language, n (%)   .80 
 English 119/122 (98) 4785/4962 (96.4) — 
 Other 3/122 (2) 177/4962 (3.6) — 
Ventilator dependence, n (%)    
 Yes 43/122 (35) 468/4971 (9.4) <.001 
Insurance, n (%)   <.001 
 Medicaid 90/121 (74) 2831/4848 (58.4) — 
 Private or federal 31/121 (26) 2017/4848 (41.6) — 
Age, y, n (%)   .32 
 <1 79/121 (65) 2755/4946 (55.7) — 
 ≥1–<18 35/121 (29) 1939/4946 (39.2) — 
 ≥18 7/121 (6) 252/4946 (5.1) — 
    
SES metric,b median (range) 0.13 (0.01–0.55) 0.11 (0–0.84) .09 

—, not applicable.

a

Percentages add to slightly >100% because of rounding.

b

Range of 0–1, with 1 meaning that everyone in the census tract is below the poverty level according to the American Community Survey 2013–2017.

TABLE 2

Multivariable Logistic Regression Analysis of the Association Between Select Predictors and Being Identified as Having Ethical Issues During Interprofessional Ethics Rounds

Odds RatioConfidence IntervalP
Sex    
 Male 1.05 0.69–1.60 .83 
 Female Reference category — — 
Race    
 White Reference category — — 
 Black or African American 1.71 0.99–2.92 .05 
 Other 1.03 0.43–2.50 .94 
Ethnicity    
 Non-Hispanic 0.56 0.24–1.31 .18 
 Hispanic Reference category — — 
Religion    
 No religion Reference category — — 
 Other Christian 1.26 0.79–1.99 .33 
 Catholic 0.75 0.34–1.64 .47 
 Other 1.49 0.55–4.03 .43 
Primary language    
 English Reference category — — 
 Other 0.62 0.13–2.91 .54 
Ventilator dependence    
 Yes 5.78 3.69–9.04 <.001 
Insurance    
 Medicaid Reference category — — 
 Private or federal 0.83 0.50–1.37 .47 
Age 0.97 0.94–1.01 .12 
SES metric 1.22 0.21–7.22 .83 
Odds RatioConfidence IntervalP
Sex    
 Male 1.05 0.69–1.60 .83 
 Female Reference category — — 
Race    
 White Reference category — — 
 Black or African American 1.71 0.99–2.92 .05 
 Other 1.03 0.43–2.50 .94 
Ethnicity    
 Non-Hispanic 0.56 0.24–1.31 .18 
 Hispanic Reference category — — 
Religion    
 No religion Reference category — — 
 Other Christian 1.26 0.79–1.99 .33 
 Catholic 0.75 0.34–1.64 .47 
 Other 1.49 0.55–4.03 .43 
Primary language    
 English Reference category — — 
 Other 0.62 0.13–2.91 .54 
Ventilator dependence    
 Yes 5.78 3.69–9.04 <.001 
Insurance    
 Medicaid Reference category — — 
 Private or federal 0.83 0.50–1.37 .47 
Age 0.97 0.94–1.01 .12 
SES metric 1.22 0.21–7.22 .83 

—, not applicable.

TABLE 3

Primary Ethical Issues Identified During Interprofessional Ethics Rounds (n = 122)

Primary Ethical IssueaDefinitionn (%)b
Goals of care Prognosis issues or disagreements, disagreement about right plan of care, uncertainty or disagreement about medical outcome 44 (36) 
Futility Medical or perceived inappropriate treatment or nonbeneficial treatment 14 (11) 
Discharge or placement Refusal of discharge, home safety concerns; lack of resources or insurance to cover needed care; concerns about parent ability to care for patient at home 12 (10) 
Surrogate decision-making Issues around who is making decisions for patient, challenges with identifying surrogate, no surrogate, concerns about appropriateness and/or capacity of surrogate, disagreement between parents and/or co–decision-makers 10 (8) 
Refusal of recommended treatment or Plan of care Parents (or patient if adult) refuse, resulting in harm or poor outcome for patient 8 (7) 
Beneficence, Nonmaleficence, or Fiduciary responsibility Concerns or disagreement about child’s best interests, competing best interests (siblings, staff), duty to help and avoid harm 8 (7) 
Isolated incapacitated patient Parent disengaged or avoiding parenting role, parent(s) difficult to reach by phone or not present 6 (5) 
Capacity or Informed consent of patient Issues regarding whether an adult patient can make their own decisions, informed refusal concerns, coercive decision-making 4 (3) 
DNR or code status Unilateral DNAR or code status disagreements 4 (3) 
Research ethics Experimental interventions or other research concerns 3 (2) 
Resource allocation Long length of stay concerns, high costs associated with treatment or care 2 (2) 
Medical error Medical mistake, unexpected outcome or complication 2 (2) 
Brain death Disagreement about doing brain death examination, disagreement about interpretation of criteria or whether brain death exists 1 (1) 
Child preference or assent The role of the child’s voice and participation in or authorization of plan of care 1 (1) 
Privacy and confidentiality Concerns of privacy, sharing of confidential information, protection of information 1 (1) 
Withdrawal or withholding artificial N&H Stopping over parental objection, team concerned about ethicality of decision 1 (1) 
Advance directive DPOA concerns, legal designation of surrogate, statement of wishes if capacity is lost in the future for patients 18 and older 1 (1) 
Primary Ethical IssueaDefinitionn (%)b
Goals of care Prognosis issues or disagreements, disagreement about right plan of care, uncertainty or disagreement about medical outcome 44 (36) 
Futility Medical or perceived inappropriate treatment or nonbeneficial treatment 14 (11) 
Discharge or placement Refusal of discharge, home safety concerns; lack of resources or insurance to cover needed care; concerns about parent ability to care for patient at home 12 (10) 
Surrogate decision-making Issues around who is making decisions for patient, challenges with identifying surrogate, no surrogate, concerns about appropriateness and/or capacity of surrogate, disagreement between parents and/or co–decision-makers 10 (8) 
Refusal of recommended treatment or Plan of care Parents (or patient if adult) refuse, resulting in harm or poor outcome for patient 8 (7) 
Beneficence, Nonmaleficence, or Fiduciary responsibility Concerns or disagreement about child’s best interests, competing best interests (siblings, staff), duty to help and avoid harm 8 (7) 
Isolated incapacitated patient Parent disengaged or avoiding parenting role, parent(s) difficult to reach by phone or not present 6 (5) 
Capacity or Informed consent of patient Issues regarding whether an adult patient can make their own decisions, informed refusal concerns, coercive decision-making 4 (3) 
DNR or code status Unilateral DNAR or code status disagreements 4 (3) 
Research ethics Experimental interventions or other research concerns 3 (2) 
Resource allocation Long length of stay concerns, high costs associated with treatment or care 2 (2) 
Medical error Medical mistake, unexpected outcome or complication 2 (2) 
Brain death Disagreement about doing brain death examination, disagreement about interpretation of criteria or whether brain death exists 1 (1) 
Child preference or assent The role of the child’s voice and participation in or authorization of plan of care 1 (1) 
Privacy and confidentiality Concerns of privacy, sharing of confidential information, protection of information 1 (1) 
Withdrawal or withholding artificial N&H Stopping over parental objection, team concerned about ethicality of decision 1 (1) 
Advance directive DPOA concerns, legal designation of surrogate, statement of wishes if capacity is lost in the future for patients 18 and older 1 (1) 

DNAR, do not attempt resuscitation; DNR, do not resuscitate; DPOA, durable power of attorney; N&H, nutrition and hydration.

a

Adapted from the Nilson et al33  and Johnson et al29  classification schema for ethics consultation.

b

The total percentage does not add to 100% because of rounding.

Patients who were ventilator dependent had higher odds of being identified as having an ethical issue during interprofessional ethics rounds. Although we were concerned that proactive ethics rounds initiatives could disproportionately impact specific patient groups on the basis of sociodemographic factors of race and SES, beyond ventilator dependence, we found no other significant differences between the groups after adjusting for confounders. However, the interactions between health care professionals, patient characteristics, and systemic and/or societal issues that contribute to severe illness and health disparities are complex.25 

Our data suggest that patients with increased medical severity are more likely to have ethical issues identified during interprofessional ethics rounds. This appears consistent with the literature, which reveals that most ethics consultations arise in the ICUs, where adult and pediatric patients are likely to be sicker.11,26  The most common primary ethical issue identified was goals of care (44%); this could be attributed to the difficulty of prognostication in children as well as the upstream nature of rounds. It is difficult to situate our findings within the extant literature because of the lack of a standardized classification schema of ethical issues across institutions and the lack of proactive ethics studies.27  However, our results from using a proactive approach to address ethical issues differ from the pediatric formal ethics consultation literature, which is limited to oncology and academic medical settings, where various issues, such as medical futility, code status, and decision-making, were more prevalent and could be considered as more downstream end-of-life concerns.2830 

It is possible that through a proactive ethics approach, the implementation of interprofessional ethics rounds may have impacted the timing of and necessity for a formal consultation. As such, further research is needed to explore whether changes in consultation requests as a result of this initiative occur. Assessing the effect of interprofessional ethics rounds on the severity and acuity of ethics consultations is of interest. Examining how everyday ethical issues are identified, conceptualized, and discussed by ethicists and members of the interprofessional team during rounds should be further explored to address concerns of bias given limited data available around this topic.79  Finally, further research to explore whether having an ethical issue identified during interprofessional ethics rounds leads to different health or other outcomes for these patients is of interest.

Our study is from a single center with underrepresentation of Hispanic patients; these findings may not generalize to all pediatric patients who are critically ill. Because the ethicist participated in rounds once per week, some patients in the larger group might have had ethical issues identified if rounds were conducted more frequently and/or on different days. Limiting the analysis to patients admitted on the day rounds were conducted could have altered the relationship between groups in our results; however, this does not appear to be of concern on the basis of previous research.31  A single ethicist was beneficial for consistency in interpretation of ethical issues; however, the results could have been influenced by variables distinct to that individual. Although team dynamics and/or hierarchy could have impacted team members’ comfort with discussing ethical issues, it is noted in previous studies that ICUs tend to be close-knit communities of professionals who know one another well, which could positively contribute to their willingness to speak up and discuss individual viewpoints15 ; furthermore, the ethicist’s presence was approved by unit physician and nursing leadership, signaling to team members that moral engagement and expression of diverse viewpoints are invited, sanctioned activities.32  Finally, although the sociodemographic makeup of health care professionals at our institution differs from the population identified as having ethical issues,20  our results suggest severity of illness rather than patient-team discordance to be more contributing.

Patients who were ventilator dependent had higher odds of being identified as having an ethical issue during interprofessional ethics rounds. Other than ventilator dependence, patients with ethical issues identified on interprofessional ethics rounds and all other patients admitted to the PICU, PCTU, and NICU have similar sociodemographic characteristics.

We thank Drs Andrew Shuman and Christian Vercler for their contribution.

Deidentified individual participant data are not available.

Ms Kana contributed to conception and design, acquisition and interpretation of data, and drafting of the article; Ms Feder contributed to conception and design, interpretation of data and revising of the article critically for important intellectual content; Ms Matusko contributed to analysis and interpretation of data and revising of the article critically for important intellectual content; Dr Firn contributed to conception and design, acquisition and interpretation of data, and revising of the article critically for important intellectual content; and all authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.

FUNDING: Supported by the National Center for Advancing Translational Sciences of the National Institutes of Health (TL1TR002242). Funded by the National Institutes of Health (NIH).

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Competing Interests

POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.

FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.