Antiracism: An Ethical Imperative

The workshop, although held during the subgroup meeting, was open to all attendees of the annual meeting, including those who were not members; however, it was largely attended by those who were affiliated with the national organization’s pediatric subgroup. The membership of the subgroup includes pediatricians, pediatric nurses, chaplains, social workers, other pediatric health professionals, and pediatric clinical ethics consultants; many members fill more than 1 of these roles.

Following the meeting, the leadership of the pediatric ethics subgroup (3 of the authors, I.W., B.M., and A.C.B.) compiled notes from the workshop. These notes, along with an invitation to join a working group to continue addressing the issues raised in the workshop, in part through the writing of this manuscript, were sent out to all members of the pediatric ethics subgroup, including those unable to attend the workshop. Those that volunteered represented a variety of clinical and academic disciplines (respectively including, but not limited to, nursing, medicine, and social work; and philosophy, psychology and anthropology) and urban, suburban, and rural institutions of varying sizes across the United States. All authors were facilitators or participants in the workshop and have been working on issues related to health equity throughout their careers. As authors, we acknowledge the privileged space we occupy and seek to approach this topic as allies, shedding light on an area in need of it.

The intent of the workshop and our reporting of the data here is not to represent or speak for any population but to identify (1) racist policies we are cognizant of at various institutions providing health care to children, and (2) strategies whereby pediatric ethicists, pediatricians, and pediatric leaders, working together within pediatric health care environments, can and should advocate for actively antiracist policies, procedures, and practices to improve care for children, families, and communities.

Twenty-one examples across 7 larger categories were identified during the workshop (Table 1). The 7 policy categories included: hospital security and staff safety, reporting to child protective services, behavior contracts, patient visitation, hospital routines, medical decision-making and clinical care guidelines, and employment and human resources. In the next section, we discuss specific examples of the racist impact of the policies and procedures identified in the workshop and related literature supporting those categories. We conclude with actionable, concrete suggestions for change supported by our lens as pediatric ethicists.

Although writers of hospital policies typically seek to assure consistent quality and fairness through uniformity, policies do not exist in a vacuum. Policies designed only with an eye to equality, such as visitation times, often neglect issues of equity, as they only benefit those with enough privilege to adjust their life to those periods of time. Policies that are not sufficiently sensitive to issues of equity can recapitulate racist structures that exist within society, affect minoritized populations inequitably because of their exposure to adversity outside the hospital, and/or be implemented in ways that are vulnerable to interpersonal bias, or fail to meet the needs of some populations at (e.g., interpreter services, considerations of accessibility or health literacy).

For example, in the context of hospital security and staff safety, the development and implementation of security policies can extend racist hierarchical boundaries that exist in society at large into the children’s hospital environment in ways that are not always recognized or acknowledged.¹⁵  Security posture at the point of entry into children’s hospitals may impact the psychological state of patients and families who have been affected by disproportionate policing in their communities.^26,27  Beyond the point of entry, 1 study found that Black patients and their visitors were twice as likely to have security called on them as non-Black patients and their visitors.²⁸  Such findings have raised concerns that bias leads to the misinterpretation of emotions and that when expression of emotion at the bedside does not fit within dominant cultural norms, it is deemed deviant, a risk for workplace violence, and in need of policing.

Policies, procedures, and practices regarding reporting to child protective services constitute another example of racist policy and practice. Black children are more likely to have contact with child protective services by the age of 18 than their white peers, possibly explained in part by racialized poverty.²⁹  Inequities persist in decisions to investigate, substantiate, remove from, and reunify families.^29–32  This phenomenon has been deemed the “criminalization of poverty.”^33–35  Health care personnel are the third largest group of reporters, after legal and education professionals, potentially exacerbating pre-existing mistrust in medical institutions.³⁶  Although mandatory reporting benefits many children and remains a legal obligation, policies, practices, and procedures that encourage reporting without assessment can further the disparity in child welfare reporting. For example, a policy to report all parents who leave the hospital with their child against medical advice without adequate understanding of their reasons prioritizes medical power, devalues other knowledge and considerations, and could lead to unnecessary harms.

Hospitals are distinct from most other public-facing businesses in that people routinely enter them under circumstances of profound stress, trauma, and grief. However, behavioral expectations at the bedside can become weaponized to promote racism. Behavior contracts or agreements are used in many children’s hospitals, usually guided by dedicated policies regarding such contracts.³⁷  These agreements between clinician and patient were initially used to promote “compliance” or “adherence” to treatment plans. However, these contracts have increasingly been deployed to address parent behaviors that have been labeled as disruptive or inappropriate. Behavior contracts specify the hospital’s identification of such behaviors and their expectations of appropriate behavior. Such contracts are subject to implicit bias (unconscious, unintentional biases affecting judgments, decisions, and behavior) when identifying “difficult” patients and families and defining negative behavior. Behavior contracts also raise issues of coercion and promote injustice, especially when the consequences for refusing to agree to or violating a contract may be removal from hospital grounds and loss of the ability to visit one’s child.³⁷  There needs to be more focus toward the institutional behavior through bias and de-escalation training to help clinician’s understand their own bias and provide them with strategies aimed at partnering versus policing.^38,39 

Children’s hospitals often establish visitation policies aimed toward helping families productively regulate visitation of their child while also creating an environment in which all children can be safely and effectively treated. The coronavirus disease 2019 pandemic prompted a reversal of a decades-long trend toward minimally restrictive approaches to visitation. Many hospitals rapidly restricted visitors, with little attention to the impact, creating a host of downstream inequities. Policies requiring parental vaccination, for instance, ignored realities regarding health care access and medical and institutional mistrust in many racial and ethnic minority communities.⁴⁰  Policies that limited visitation to 1 or 2 parents were predicated on assumptions of the nuclear family structure as the norm and even ideal.⁴¹ 

Families with fewer resources and more demands on those resources, including less flexible employment, difficulty accessing transportation, and lack of childcare, are more likely to be racial and ethnic minority individuals and are, thus simultaneously more likely to be harmed by restrictive visitation practices.⁴²  Mechanisms for requesting and granting exceptions, often introduced in response to concerns about “1 size fits all” policy-making, inadvertently privilege families with the education and empowerment to self-advocate.³⁶  Individualized review of requests for exceptions, even when anonymized, may not prevent inequitable application of policy.⁴³  For every situation, a health care professional, often an administrator in a position of power, must make an assessment that the written policy in fact applies and then make a series of choices regarding how the policy should be applied. Visitation policies provide a powerful example of how systemic racism can impact the policy implementation process, despite “good intentions” on the part of those involved.

Many “policies” are in fact unwritten, a collection of common practices rooted in institutional culture, tradition, and memory. The culture of an institution has a great impact on how policies and practices may perpetuate racism and even embed into standard operations and daily hospital routines. The day-to-day work of clinical teams, for instance—including major clinical discussions and decisions—happen during normal business hours, and there is an unwritten, pervasive assumption that families should accommodate this.⁴⁴  Families who cannot conform to this expectation are often presumed to be deviant—uninterested in their child or their child’s health and health care, even when their absence from the bedside is to earn a paycheck to support the family or to care for other children—a form of narrative injustice that prevents the parent from telling their own story to the health care team.^45,46 

Institutional health care must be cautious about how it asserts its preferred narrative for the patient rather than allowing the patient to claim and tell their own story.⁴⁷  Examples of this can be seen when we look toward everyday ethics in practice through an antiracist lens. Kalevor and colleagues highlight this important area in their discussion of labels (“lovely” versus “difficult”) that impose judgement on patients and families, which is then amplified in patient hand-offs and shift reports.⁴⁶  Progress notes that report “no contact from parents” may seem neutral or have some administrative rationale but too easily interact with our implicit expectations of daytime presence at the bedside to create a narrative of a “bad parent.”⁴⁵ 

The expectations of pediatric health care professionals, which are still disproportionately generated through a dominant white middle-class lens, have a significant impact upon families who do not share that lens. There are generally no policies written requiring parental presence at the bedside and yet the expectation is ubiquitous. When telephone updates are attempted with family members, a call rolling to voicemail too often can be perceived as a sign of a disinterested family. The grace we give families is not often shown equitably; it is subject to biases. These issues are further exacerbated by policies and practices in employment and human resources, which fail to promote the recruitment and retention of health care workers from racial and ethnic minority groups who might challenge that lens.^48,49 

Last are policies that actively seek to guide, dictate, or constrain the interventions children can receive, policies that specify medical decision making and clinical care guidelines. These include policies regarding eligibility for interventions, such as tracheostomy placement or organ transplantation, policies regarding when an intervention desired by the family is deemed “potentially inappropriate,” “nonbeneficial,” or “futile” (including the unilateral imposition of do-not-resuscitate orders over family objection), and policies regarding age of transition to adult care, among others. Subjectivity embedded in when such policies are activated and whether or how exceptions are granted can result in their inequitable application. For example, policies requiring that 2 adults live in the home of a child receiving a tracheostomy, intended to assure that the child’s health could be adequately monitored, differentially impact families living in poverty; however, subjectivity embedded in when this type of policy is activated and for whom an exception is granted can result in inequitable application.

Pediatric ethicists in children’s hospitals have a responsibility beyond any individual consult. Identifying and responding to systemic issues discovered during consults are an integral part of an ethicist’s organizational ethics work. The ethical culture of an organization can be a target of antiracist work and a catalyst for building a more inclusive, equitable, antiracist organization. This work requires, first, close collaboration with experts specifically trained in diversity, equity, inclusion, and belonging (DEIB) who are employed in roles intended to do this work—including in case review, policy review, and rounding—as well as patients, families, and the community, and second, centering justice as an essential ethical principle in pediatric ethics work. Organizations that lack a DEIB office and related expertise should be strongly encouraged to build such expertise—deliberately, rather than burdening faculty and staff from minoritized backgrounds to do such work on a volunteer basis, the “minority tax.”⁵⁰  The goal is to foster a climate that supports and promotes antiracism in children’s hospitals and, more specifically, in pediatric clinical and organizational ethics work. Components of such a climate are listed in Box 1, whereas below we outline concrete steps that pediatric ethicists in children’s hospitals can take immediately to create the necessary change to address the problems above.

At an organizational level, ethics leaders can bring an antiracist and equity lens to policy development and implementation, practices, and procedures and to organizational strategies and priorities along with experts in DEIB. Doing so requires careful attention to the ways in which a policy is developed, implemented (procedure), conducted (practice), and experienced by others.

Hospitals can and should create centralized processes to systematically and prospectively assess the implementation and impact of policies. Such processes should be transparent, allowing those who will be conducting and affected by the policies—including patients and families—to readily access data. Such data should include all instances of policy activation, so that those reviewing these policies can understand, at the outset, how frequently policies are activated and in what circumstances, allowing for identification of similar cases in which policies were not activated.

Many of the same strategies and tools used for quality improvement to optimize patient safety could be applied. This would require policymakers to identify, a priori, who will be affected by the policy, how use of the policy will be tracked, and what relevant outcome measures will be analyzed. Regular review of that data and revision of the policy in a Plan-Do-Study-Act cycle could be used to move the needle toward more equitable practice. For example, many hospitals have requirements for ethics consultation in specific situations, such as determinations of “potentially inappropriate treatment” or withdrawal of artificial nutrition and hydration.⁵¹  However, such requirements do not capture situations in which clinical teams opt to negotiate and reach a compromise or choose to accede to caregivers’ wishes. It is critically important that hospitals understand when this is happening and when it is not happening—and to whom. When policies are activated, hospitals need to track demographic information on patients, family response to the discussion of the policy, and outcomes, including whether any exceptions or compromises were made after policy activation and what ultimately happened. Data should be regularly reviewed to identify inequities in policy utilization and outcomes.

Those involved in this process should ideally reflect the diversity of the hospital’s patient population and should have training in health equity and implicit bias. Finally, such processes should be transparent, allowing those who will be conducting and affected by the policies – including patients and families – to access the policy, data about how it is being used, and information about the hospital’s process for review and improvement.

As noted above, there are often implicit assumptions regarding caregiver presence at the bedside. Instead, hospitals might adopt practices that clarify the caregiver’s preferences regarding communication at the time of admission. The timing of rounds can and should be regarded as flexible, with the needs of the hospital and other patients balanced equitably with the needs of the individual family. For example, a parent who needs to be home in the morning to care for siblings and see them off to school might be able to return later in the morning; the team should recognize this and time rounds to accommodate. Afternoon or evening rounds can be used more frequently, providing families with consistent alternative times to connect with their children’s health care professionals. Families who are not physically present but who can be available via telephone should always be called and invited to participate in rounds, just as a physically present caregiver would. Teams should always establish how parents and guardians can be reached for urgent decisions and updates, when appropriate, and who can make decisions in their absence, when necessary. As another example, visitation policies might clearly state that infant siblings are permitted to stay overnight in patients’ rooms with their primary caregivers where appropriate, rather than placing the burden on families to request exceptions for such reasons. Other examples of equity-promoting policies include policies specifying standards for the use of interpreters and requirements for documentation of asserted pronouns and names in the electronic medical record.⁵² 

Most hospitals already have systems in place to allow for systematic monitoring and tracking of patient safety and quality, as well as teams charged with promoting quality, safety, and process improvement, and many have patient safety “dashboards” that allow reviewers to quickly access important metrics related to quality. Many systems also have mechanisms for employees and learners to report experiences of bias, discrimination, and mistreatment.^53,54  Health equity should be recognized as a patient-centered outcome and its consideration embedded into existing patient safety and quality structures. Patient safety teams should include an expert in DEIB. Existing dashboards should consistently include data regarding patient’s race, ethnicity, insurance status, gender identity, and language, among other information. Effort should be made to collect this information as accurately as possible, recognizing that current practices often permit hospital staff to enter a patient’s race into the system without consulting the patient. Inequity—including instances of interpersonal racism—should be treated as a critical safety event for which anyone can anonymously file a report for review and potential corrective action. Equity should also be consistently incorporated into morbidity and mortality conferences and other opportunities for learning through continuous quality improvement. Organizations should have a team, including ethicists, to review data, provide comparative analysis on cases or situations subject to bias and inequity, and be able to make or suggest changes to policies, procedures, and practices as needed. Similarly, clinicians should have access to their patient outcomes by demographics, accompanied by regular, guided opportunities to identify and reflect on their own biases. Hospital administrators can set targets for achievement around these outcomes.

Unintended negative consequences in policies can be reduced (though not eliminated) by:

• Purposefully adopting an explicitly antiracist approach in all hospital practices and policies, which includes revising and removing those policies that exacerbate disparities or elevate some cultural values over others.

• Simulation training with an emphasis on addressing bias and de-escalation in practice based on recommendations and guidelines set forth by Vora et al (2021) for staff.^38,39 

• Increasing representation of minoritized voices among those writing and reviewing policies, including by addressing the negative experiences with macro- and microaggressions in the workplace that affect recruitment, retention, and willingness to participate in such efforts.^55,56 

• Building a supportive, inclusive organizational culture that values cultural humility over competence.

• Building effective collaborations with experts in DEIB, including educators and administrators, as well as with patients, parents, and other community representatives for critically important, longitudinal effort to support goals.

• Widening the lens of policy writing and approval to consider all gaps that might exist in current and future hospital policies with regard to the goal of creating antiracist policies.

• These efforts can be facilitated by ensuring that committees, including ethics committees, that are involved in the drafting and approval of policies are diverse across all aspects of identity.

• Parents, older patients, and community members—people outside the health care infrastructure—must be represented as standing committee members and as contributors to policy development.⁵⁷ 

The challenges and opportunities identified above are applicable across the spectrum of health care for children. Policies are one area in which clinical ethicists within pediatric health care environments have the necessary lens to engage in and assist their institutions in antiracism and they have a professional obligation to “promote just health care” and “identify systemic issues constraining fair outcomes.”²³  We acknowledge that changing deeply rooted practices and policies—changing culture—is a formidable task. The alternative is that we, as authors, pediatric clinicians, and ethicists, remain complicit in the perpetuation of racism. In undertaking this work, we sought to provide a framework for all pediatric ethicists and clinicians, including ourselves, to pursue antiracism in our policies and institutions.

WE thank G. Rumay Alexander, EdD, RN, FAAN and Gitanjli Arora, MD, DTMH for their thoughtful and valuable reviews of the initial manuscript; the reviewers of this manuscript for their important critical feedback; and the membership of the Pediatric Ethics Affinity Group of the American Society for Bioethics and Humanities for their contributions at our 2021 Annual Meeting, which inspired this manuscript.

DEIB

diversity, equity, inclusion, and belonging