Become a Patreon!


Excerpted From: Anna Kirkland and Mikell Hyman, Civil Rights as Patient Experience: How Healthcare Organizations Handle Discrimination Complaints, 55 Law and Society Review 273 (June, 2021) (4 Footnotes/References) (Full Document)


KirklandandHymanJennifer is a registered nurse who has been working in the Patient Experience Department of a large Michigan hospital for 6 years. It is her job to handle patient complaints about discrimination, but she has never heard of Section 1557 of the Affordable Care Act (ACA) where nondiscrimination rights were newly codified in 2010. Nonetheless, Jennifer has a well-developed approach to detecting and handling patient problems. She explains her “concierge” approach:

Primarily, my focus is to make sure that our patients have everything they need to have the best possible experience, whether it's through communication, whether it's comfort items, whether it's helping their family make arrangements from a local hotel, getting them directions, kind of like a concierge-type program. And then complaint management and resolution. Like anything to do with quality for the patient experience.

Jennifer cares about patient experience and satisfaction, and her professional orientation toward disputes is organized around these priorities.

Though she had not heard of it, Section 1557 of the ACA was supposed to change Jennifer's job. The text of the law provides that “[A]n individual shall not, on the ground prohibited under title VI of the Civil Rights Act of 1964 (42 U.S.C. 2000d et seq.), title IX of the Education Amendments of 1972 (20 U.S.C. 1681 et seq.), the Age Discrimination Act of 1975 (42 U.S.C. 6101 et seq.), or section 794 of title 29, be excluded from participation in, be denied the benefits of, or be subjected to discrimination under, any health program or activity, any part of which is receiving Federal financial assistance.” Its unusual text, not listing protected categories but simply referencing other laws, was designed to show that these healthcare rights are grounded in pre-existing laws. Nondiscrimination provisions already reached healthcare settings under race, age, and disability nondiscrimination laws, but sex discrimination was newly covered with the reference to Title IX. The Office of Civil Rights (OCR) at the Department of Health and Human Services (HHS) began taking complaints to enforce it when the ACA passed in 2010.

Our focus is the implementation of the Obama administration's 2016 regulations for Section 1557, which brought additional changes. These administrative rules required all covered healthcare entities to post-nondiscrimination notices, set up an internal grievance process for civil rights claims, and name a Section 1557 coordinator, among other things (Department of Health and Human Services, 2016). There were therefore several new and potentially significant features of this new healthcare rights law (the provision itself combined with the implementing regulations): (1) it added sex to the list of protected categories in healthcare; (2) it required that at least part of someone's job be focused on civil rights in nearly all healthcare settings in the US; (3) it required a grievance process on-site about civil rights claims; (4) it gave patients a private right action to file a lawsuit without waiting to go through that internal grievance process; (5) it embraced gender identity and sex stereotyping as part of sex discrimination, thereby explicitly elevating transgender healthcare rights and health equity; and (6) it expanded the scope of legal remedies to include disparate impact claims (Watson, 2011).

Health law scholars have explicitly called for using law, including civil rights laws, to fight health disparities and promote population health (Burris & Anderson, 2013; McGowan et al., 2016). It initially seemed that Section 1557 could have major impacts throughout the healthcare system, and in some ways it did. One of the biggest impacts of Section 1557 has been the large scale removal of transgender care exclusions from ACA-governed health insurance plans, for example (Out2Enroll, 2020). Both the ACA generally and these specific rights promised expanded access to health insurance and healthcare, and advocates hoped that the well-documented patterns of discrimination, stigma, and abuse of transgender and gender variant people in healthcare settings would become recognized and possibly eased along with health disparities based on other categories such as race (National Center for Transgender Equality, 2015; Wang et al., 2016). Business-side lawyers appeared to agree that there could be a lot more litigation pressure on insurers and healthcare providers for discrimination claims of many kinds. One healthcare attorney called Section 1557 “the future of healthcare discrimination litigation” and the “legal side of health equity,” warning clients that the private right of action and access to disparate impact claims made Section 1557 “a powerful tool in the hands of a private plaintiff” (Stevens, 2015).

For most organizations, it turned out that Section 1557 implementation did not require major changes. Critically, the 2016 implementing regulation explained that “nothing in the rule bars a covered entity from combining the grievance procedure required under Section 1557 with procedures it uses to address other grievances, including those unrelated to individuals' civil rights” (Department of Health and Human Services, 2016, p. 31,394). Civil rights offices across the federal government have long relied on internal grievance procedures as the first step of rights enforcement, and the federal statutes referenced in Section 1557 require them (Department of Education Office for Civil Rights, 2018). The Centers for Medicaid and Medicare Services (CMS) regulations already provided guidance about patient grievances and complaints, pre-dating the Section 1557 requirement (2008). Most organizations simply handed the new 1557 duties to their pre-existing patient grievance handler (our general term for this role). Jennifer's experience is typical of the people in these roles: she is trained as a nurse and has moved into an administrative role, she is not familiar with Section 1557, but is highly attuned to patient problems filtered through personal interactions and survey data. Her primary focus is patient experience, not rights.

This study examines the organizational and professional field in which grievance handlers like Jennifer encounter and manage healthcare discrimination claims. How do they perceive and process patient problems, and what are the implications for placing new healthcare civil rights in their hands? We interviewed 58 grievance handlers in hospitals, ambulatory surgical centers, and Federally Qualified Health Centers (FQHCs) in California, Michigan, Alabama, and New York between May 2017 and February 2019. Our focus is the professionals in healthcare settings who receive complaints, because what they do when they encounter a problem helps to shape what Section 1557 really means on the ground. Although the transgender inclusion issue has been a prominent feature of Section 1557, we do not limit ourselves to transgender-related issues here. Our interest is on the front end of the dispute handling process, where someone must first see and take up a patient problem.

We argue that in healthcare provision, patient complaints about possible civil rights violations are not framed as a legal matter but rather as lapses in proper patient services. Because of the organizational and professional context, there are multiple barriers to rights recognition in healthcare that we explain through professional logics, the tools available to the people in these jobs, and the array of incentives and meaningful pressures that shape their legal consciousness. Grievance handlers use interpersonal strategies designed to de-escalate patient anger while seeking to avoid any blame that might fall to the organization. Our findings have significant implications for understandings of healthcare civil rights on the ground as well as for sociolegal theorizations of rights mobilization in organizations. We show that even under conditions of great attentiveness to patient grievances--often entire departments devoted to them with money at stake--it is possible to diminish and explain away patients' claims, while doing little to address discrimination or systemic inequality in US healthcare provision. Approaching problems as rights violations rather than patient experience problems would mean taking conflict seriously, making a way for acknowledging forces such as racism, sexism, transphobia, and homophobia as drivers of health disparities.

[. . .]

Silbey (2005) noted that meso-level institutional practices can illuminate how legal consciousness results in failure to confront inequalities and mistreatments. To understand how patient civil rights work on the ground through healthcare institutions, we studied the professionals who are the first to hear about discrimination claims and who must decide how to respond. We argued that nondiscrimination rights claims in healthcare settings are largely subsumed by the patient experience turn. This patient experience approach and the professionals who implement it are not attuned to recognizing civil rights violations in the problems and complaints they see every day. They care very much about responding to problems, but commonly delivered in ways that deflect blame (“everyone has bias” or “there are three sides to every story”) and aim for “service recovery.” The patient experience turn becomes real on the ground through everyday work practices, in other words.

We have argued that grievance handlers' professional logics, tool kits, and legal consciousness structure their approach to handling patient problems. This conceptual framework sheds new light on the relationships between rights, medicine, and law. It reveals staff professionalization as central to shaping legal consciousness into different forms. Our respondents were guided by institutional legal concerns about the consequences of many kinds of mistakes, but these filtered down to their everyday work as imperatives about patient satisfaction. Patients can only become upset about problems they directly experience (not, e.g., a surgical error while under anesthesia or a decision not to treat), and so the range of possible mistreatments becomes focused on the subset that create unhappy patients. We show how it is possible for an organization to be highly focused on implications of regulatory compliance and to hire a professional class dedicated to responding to patient problems, but still largely fail to recognize and respond to civil rights violations.

There was little elaboration in Section 1557 or its 2016 regulations of an affirmative vision of nondiscrimination on the ground in healthcare. Much of the focus was on implementing language access for non-English speakers (mandating how many local language translation options must be printed on which documents) and ensuring that transgender patients receive the same care that would be offered to a cisgender person (that is, if the hospital does hysterectomies, they cannot deny them to a transman). It is central to our critique that civil rights violations are different from other patient problems and deserve to be handled differently, but how exactly? What alternative professional logics, tool kits, and legal consciousness could help healthcare organizations respond better? We can consider what could be changed to create new possibilities for law to become real in healthcare. Two critical features of the 2016 regulation shaped the way that Section 1557 would enter healthcare: first, the focus on appointing a grievance handler and having a policy, elevating procedure as compliance, and second, allowing organizations to hand the new duties to someone already in place because of pre-existing regulatory requirements to have a grievance process. These features pre-determined the professional logics and tool kits grievance handlers would employ.

A civil rights-focused professional logic in a healthcare setting would refuse the dichotomies we identified that separate the clinical from the interpersonal, leaving discrimination to be downgraded to interpersonal unhappiness. Indeed, the 2016 regulations explicitly entertain the possibility of clinical care as a site of discrimination, such as if a doctor refused to provide surgical or medical services to someone on the basis of their gender identity (transgender status). Discrimination must be able to be captured at all levels of the patient's engagement with the healthcare providers and staff, including contexts where there is no “patient experience” at all: in clinical decisionmaking, in records the patient does not see, in care provision under anesthesia or when the patient cannot experience what is happening, and in personal interactions. The professional handling the possible cases must have access tools and status in the hierarchy to probe all these contexts. A civil rights legal consciousness would focus one's attention on identity categories and inequalities arising from racism, sexism, ableism, homophobia, and other forms of prejudice, in both their overt and more subtle forms. The fact that the 2016 regulations permitted disparate impact lawsuits should have meant that structural inequalities with an impact on vulnerable groups would be recognized (such as a hospital's decision to stop offering gender confirmation services for transgender people). The Section 1557 rules on their own terms clearly could have supported a more robust civil rights approach, that is, but there were easier paths already carved out in the patient experience department.

Our analysis suggests that it matters very much whether the person implementing Section 1557 is an attorney. Jason, the one civil rights attorney in our sample, treated the patient as legal client rather than as a dissatisfied customer. He ignored hospital hierarchy and challenged the top medical officer about a possible disability rights violation. He was also clearly very frustrated and felt shut out and unable to do his job because his approach conflicted with the expectations of other professionals (particularly patient experience administrators, the people who were the Section 1557 handlers nearly everywhere else). In our interpretation, Jason had appointed himself the attorney for patients who had barely even begun to articulate a legal claim, essentially “drumming up” rather than “cooling out” as his counterparts elsewhere did. As Jason found out, there is not much place in the contemporary healthcare professional landscape for someone with his approach to the Section 1557 role. Recall that there is an immediate right of private action in 1557, so any of these patients could have litigated on their own. As sociolegal scholars know, people are unlikely to file a lawsuit on their own, so they would need to connect with someone like Jason who could help them describe their experience as discrimination.

One alternate approach, therefore, is to heighten legalization by requiring that Section 1557 complaints be handled by an attorney, perhaps one who does not work for the organization directly, or to require transparency to legal professionals, such as opening complaints for review by outside attorneys. There would be considerable barriers to these reforms, however, because of patient privacy laws, bans on direct solicitation of clients, and the likely strong resistance to increased legality in healthcare. Another angle on this approach would be to incentivize lawsuits based on the private right of action provision by increasing its visibility as an option to patients and making it more attractive to plaintiff-side employment and personal injury attorneys. HHS's investigatory powers could be significantly expanded through both funding for more investigations but also more tools for scrutiny of complaint records and dispositions. There are significant challenges here as well, starting with the Trump administration's regulations that remove the private right of action entirely from Section 1557, followed by the broader embrace of internal procedures that head off lawsuits in government policy regardless of the political party of the president. De-fanged, poorly funded administrative structures for civil rights protections are a long-standing problem more generally (Chen, 2009), and considerable research shows that working with an attorney to seek justice on a civil rights claim is an uncertain, arduous adversarial process that does not guarantee real change (Berrey et al., 2017).

Perhaps a listening session or apology is an acceptable response to a rights violation for some patients; after all, many people do not want to pursue their rights in court and would simply like to be treated well and receive a sincere apology (Engel, 2016; Lloyd-Bostock & Mulcahy, 1994; Robbennolt, 2009). Rabinovich-Einy (2007) argues that hospitals need a transformation in their communication culture that can provide accountability when patients complain. Would it be better to eschew the adversarial confrontation of a more legalistic approach in favor of more accountability in alternative dispute resolution (no more “blameless apologies”)? Patients and their families may be hurt, in pain, sedated, or grieving, and more likely to value a faster, more soothing resolution. We find that these resolutions may be prompt and attentive, but the organizational context and priorities of patient experience departments are not well designed to handle all healthcare civil rights enforcement. Seeing civil rights violations as more than customer service problems requires shifting the whole frame of professional logics, tool kits, and legal consciousness, likely by assigning civil rights to another professional group not wholly captured by the patient experience turn and its priorities. Regulations should elevate the organizational status of those who detect civil rights violations and re-shape their priorities around seeing forces such as racism, sexism, transphobia, ableism, and confronting them.

Department of Women's and Gender Studies, University of Michigan, Ann Arbor, Michigan, USA

Institute for Research on Women and Gender, University of Michigan, Ann Arbor, Michigan, USA

Become a Patreon!