Reproductive Health Care Decisions

In the late-twentieth century, reproductive justice advocates adopted an intersectional perspective to broaden their focus beyond the right to choose abortion. Loretta Ross, one of the founders of the reproductive justice movement, purposefully avoided the term “pro-choice” because she noted that Black women often face few real choices.²⁶ Engaging with a reproductive justice frame allows a rich discussion of the unique problems that Black women face in raising children and accessing health care, including abortion and proper maternity and post-maternity care, an issue we will turn to below. But even as that focus has expanded to encompass the broader context in which women make decisions about whether to have children and how to parent the children they have, the authors of foundational works on reproductive rights and reproductive justice have only engaged health law and policy frameworks to a limited extent.

The feminist theory of relational autonomy is particularly relevant, but undertheorized, in health care law. The concept of relational autonomy focuses on the context in which people make decisions.^{Reference Nedelsky, Mackenzie, Stoljar, Llewellyn and Downie27} A relational self emerges from and is continuously shaped by the context of multiple relationships with other individuals and institutions — some of which can promote flourishing and some of which can oppress.²⁸ Relational autonomy acknowledges that autonomy is not a black and white concept where you either are autonomous or you are not. It views the individual as embedded within a complex set of relationships.^{Reference Nedelsky29}

Relational autonomy allows us to look beyond formal informed consent and acknowledge the reality that each individual choice — about reproductive health care, health care more generally, and other matters related to health — occurs within a complex web of personal and societal relationships, pressures, and obligations.^{Reference Braudo-Bahat30} In the health care arena, this includes examining the constraints and influences a patient faces when making any health care decision. Just because a person consents to a procedure or course of action does not necessarily mean that such consent is a result of an autonomous decision. For example, Pamela Laufer-Ukeles has critiqued the narrowness of the informed consent doctrine in the context of reproductive choices, noting that it ignores the political and public context of abortion and other reproductive decision-making.^{Reference Laufer-Ukeles31} She suggests that “relational autonomy … be used to transform the informed consent process into a more balanced and comprehensive consultation that better supports women's autonomy in the context of reproductive choices.”³²

Health Care Decisions beyond Reproductive Health

Relational autonomy — and feminist legal theory more broadly — have obvious relevance to matters of reproductive choice. But they could also be applied to health care decisions that range far beyond reproduction. The concept of relational autonomy has been applied in the context of reproductive choices,³³ and reproductive technologies,^{Reference Suter and Mohapatra34} as well as to allocation of health care resources,^{Reference Llewellyn, Downie and Gibson35} and end-of-life decisions.^{Reference Wright, Igel, Lerner and Ho36} It has the potential to be applied in other contexts as well.

Jocelyn Downie and Jennifer Llewellyn describe relational theory “to be a theoretical framework with extraordinary potential for health law and policy.”^{Reference Downie and Lllewellyn37} Downie and Llewellyn define autonomy under a relational lens as “the capacity for defining, questioning, revising, pursuing one's interests and goals that is exercised, protected, and corroded within relationships and social structures which together shape the individual and determine others' responses to her.”³⁸ Health law scholarship considering any form of health-care decision-making could benefit from engaging with Downie and Llewellyn's theoretical vision of autonomy. Recently, for example, Megan Wright has noted that “structural changes to … the provision and financing of long-term care … could decrease the burden on families, which may change how people make decisions at the end of life. The background conditions of social and economic inequality decrease true autonomy.”³⁹

One area particularly ripe for further consideration from a relational autonomy perspective is patient compliance with medical advice, particularly at a time when health care providers are increasingly subject to financial incentives that hold them responsible for patient outcomes.^{Reference Mantel40} A wide variety of factors, such as lack of familial support, financial insecurity, housing insecurity, experiences with racism, misogyny, homophobia and other forms of psychosocial stress, can affect whether and how a patient can adhere to a prescribed course of treatment. People make individual health care decisions based upon where they are situated. Considering the relational context in which health care decision-making is occurring is important to consider, especially when theorizing the role of law in such decisions and teaching students about patient choice and patient responsibility.

Gender Dynamics in the Health Care Workforce

Studies show that nurses and allied health professionals often do not communicate their opinions to physicians, even when it could prevent mistakes and improve the patient experience in clinical care.^{Reference Gallo and Smith43} Medical sociologists focusing on these dynamics have generated a rich body of literature, ripe for incorporation into health law teaching and scholarship. As Lisa Ikemoto has noted, adopting an intersectional lens, “the health system, and the medical hierarchy within it, replicate many of society's power relationships: between doctors and nurses, doctors and clients and nurses and clients.”^{Reference Ikemoto, Vanderstar and Shannon44} Not surprisingly, power imbalances between physicians, nurses, and allied health workers have been demonstrated to result in poorer health outcomes for patients.^{Reference Smith, Anderson and Bridges45}

A collaborative model, rather than a hierarchical model, may improve clinical care quality.^{Reference Trubek and Das46} Examining the racial and gender dynamics of the health care workforce with an intersectional lens are valuable additions to the health law literature, given the racial and gender composition of hospital staff.^{Reference Rabinovich-Einy47} Sociologist Evelyn Nakano Glenn has studied the hierarchical race and gender division of labor at hospitals: “at the top are the physicians, setting policy and initiating work for others; they are disproportionately white and male. Directly below, performing medical tasks and patient care as delegated by physicians and enforcing hospital rules, are the registered nurses …, who are overwhelmingly female and disproportionately white. Under the registered nurses and often supervised by them are the licensed practical nurses …, also female but disproportionately women of color.”^{Reference Glen48} Jasmine Harris, for example, has developed similar insights in the health law sphere, exploring how the ACA's provisions promoting access to care may deconstruct “traditional hierarchies and power allocation within the medical profession itself (most notably between doctors and nurses) as well as between formal health care workers, natural healers, and community supports.”^{Reference Harris49} The provisions of the ACA promoting integrated care delivery models also lend themselves to examination from an intersectional feminist perspective.

Another quality of care workforce issue that could benefit from feminist legal theorizing are the signifi-cant gender imbalances in certain specialties within medicine. Women who are physicians have been found to adopt “the caring” stereotype, which may actually enhance patient care. However, due to gender imbalances in training and gender stereotypes, women physicians choose surgical fields at much lower rates than male physicians. #ILookLikeASurgeon, a viral online campaign with over a billion impressions, was a social media effort to normalize and celebrate women surgeons.^{Reference Logghe50} The lack of women in certain medical specialties is both a quality of care and access to care issue. As to access, if a patient would prefer to have a female surgeon operate on her, that may not be an option due to the lack of women in certain surgical fields.^{Reference Shannon51} In terms of quality, some studies have shown that there may be better clinical outcomes with a female doctor, especially for female patients.⁵² There could be myriad reasons for these studies' outcomes, beyond skill of female physicians, and they are worth unpacking with a critical feminist lens.

Gender Dynamics in the Doctor-Patient Encounter

Some health law scholars have used the work of social scientists to analyze the impact of gender dynamics within medicine on quality health care. For example, Ikemoto has utilized Sue Fisher's fieldwork in women's health clinics to demonstrate the power imbalances that can exist in a patient encounter, especially “where the doctor is typically male, the patients are female and often racial minorities, and the doctor has both the formal education to claim expertise and more formal education than the typical patient.”^{Reference Ikemoto and Law53} Ikemoto demonstrates how such doctor-patient encounters can interfere with the communication necessary for safe and appropriate medical treatment.

The sociological literature also discusses gendered relationships between physicians and patients. Health law scholars interested in quality of care may find such literature beneficial in their work. Many sociological studies show that both patients^{Reference Davies, West, Cassell, Tabassum and Chiesi54} and nurses⁵⁵ undermine female physicians' authority and legitimacy. Additionally, other studies show that physicians often treat patients differently based on their gender or race.^{Reference Crossley56} In health law classes, teachers may find a discussion of gender dynamics, power relationships, and stereotyping would add to students' understanding of health care quality and malpractice liability.

For example, an intersectional feminist analysis of disparities in maternal mortality would consider the power dynamics at play when an African-American woman seeks prenatal care. Are African-American care providers available to her, which has been associated with better outcomes? Is the woman facing different treatment due to her race in the obstetrician's office or not being offered the same services? This is a multi-faceted issue, but one proposed intervention has been to have midwives, rather than physicians, attend to births.^{Reference Hoope-Bender57} The racial makeup of midwives is much more diverse than that of obstetricians, which may make a difference in provider-patient trust and communication.^{Reference Declercq58} Midwives, who are mostly female, and physicians, who have historically been mostly male, have a long history of conflict and turf wars.^{Reference Suarez59} Similar dynamics may also be at work with respect to other health care disparities. For example, women who experience heart attacks are less likely to survive than their male counterparts, but their survival rates are higher when they are cared for by female physicians.^{Reference Greenwood, Carnahan and Wang60} Examining how race and gender shape these power dynamics would lead to a richer understanding and perhaps different, more effective solutions targeting barriers to diversity among health care providers. Many legal frames exist for analyzing and responding to these disparities, but we are suggesting that feminist legal theories offer an important addition to the health law toolbox.

Access to Health Care

The divide between personal responsibility and public responsibility for securing access to health care is ripe for analysis from feminist perspectives. Although health care has traditionally been dominated by private, common law doctrines privileging health care providers' and insurers' freedom of contract, it is now heavily regulated in ways that purport to secure public values, including equality, dignity, and distributive justice. The affordable Care Act, in particular, has nudged health care financing and delivery away from an individualistic actuarial fairness model (in which each person is responsible for her own care and that of her family) toward a mutual aid model that embraces social solidarity (in which at least some basic level of care for at least some people is financed collectively through publicly financed programs and mandated risk pooling in the private market).^{Reference Stone, Gluck and Huberfeld65} Expanded health care civil rights protections, requirements that insurers must take all comers, and restrictions on their ability to charge differential rates based on individual risk factors are transforming health care. As Elizabeth McCuskey has described it, there is a “mutuality inherent in public health and the pooling of risk” and thus, it is perhaps unsurprising that the feminist critique of the divide between public and private responsibility for human flourishing has “quietly taken root” in health reform.⁶⁶

Feminist legal scholars have long argued that access to health care is a feminist issue and have advocated for universal health care as a necessary condition for economic and racial justice. “Women's daily relationship to securing and maintaining health care for themselves and their children,” as Susan Waysdorf has argued, “[is] a major factor in keeping women and their families locked in poverty.”^{Reference Waysdorf67} The ACA's reforms are consistent with the view that the need for preventive care and medically necessary treatment, regardless of gender, should trigger a mutual aid response; they are matters of public, not merely private, responsibility.^{Reference Huberfeld, Roberts and Majette68} As McCuskey points out, “among the ACA's federal insurance reforms were several provisions that directly address gender disparities: explicit prohibition of sex discrimination by any recipient of federal health care funds (including insurance companies, providers, and assistance programs), prohibition of gender rating[, which has historically produced higher premiums for women], federalizing ‘essential health benefits' to include women's preventive care without cost-sharing and maternity and newborn care, and prohibiting pre-existing condition penalties or exclusions, which disproportionately disadvantaged women.”⁶⁹ Critics of the ACA argue that they “shouldn't have to pay for everyone else's pregnancies,”^{Reference Franke-Ruta70} unintentionally highlighting the implications of the public-private divide for women's health care access.

The role of public and private decisionmakers in overseeing access to health care — through the design of benefits packages as well as case-by-case review of claims for coverage or reimbursement — has also garnered attention from feminist legal scholars. They have questioned whether managed care practices, which include utilization review as well as restrictive provider networks and payment structures that incentivize providers to limit patient access to specialty care, might disproportionately harm women.^{Reference MacDougall, Theodos, Oberman and Schaps71} As Vicki MacDougall put it, “whether managed care has the built in propensity to perpetuate — if not sanction and encourage — medical gender bias to the detriment of the health of women enrolled in managed care plans”⁷² is more relevant than ever now as managed care practices continue to evolve and expand beyond private insurance to Medicaid and Medicare.

Several health law scholars examining the shifting public-private divide in health care access and financing post-ACA have found Martha Albertson Fineman's vulnerability theory^{Reference Fineman and Fineman73} to be a particularly fruitful avenue for integrating feminist perspectives into their analysis of issues ranging from The shared vulnerability frame has been used to analyze a wide variety of health related topics, such as the AIDS epidemic^{Reference Ahmed74} and elder care,^{Reference Kohn75} to conscience-based restrictions on health care services.^{Reference Stephens76} Vulnerability theory highlights the inevitable and universal vulnerability and dependency of legal subjects within families, communities, and other social institutions.^{Reference Fineman77} Universal vulnerability undermines the purported divide between public and private responsibility by highlighting the extent to which individuals are universally and inevitably dependent on society and demanding a responsive state to support the resources necessary for resilience.⁷⁸ Drawing on vulnerability analysis, Nicole Huberfeld and Jessica Roberts have argued that “that the preference for private ‘hidden’ government assistance over public ‘visible’ government assistance [in health care policy] stems from the American myth of self reliance.”⁷⁹ Matthew B. Lawrence has built on shared vulnerability analysis and other feminist and communitarian theoretical frameworks to argue that “safety net” programs are in need of a new metaphor that rejects the exceptionalism of a safety net as a last resort and embraces the ecosystem of government programs and other social structures that determine our access to health care and healthy living conditions.^{Reference Lawrence80} Vulnerability analysis also casts suspicion on the relegation of care work, including a great deal of health care work, to the private sphere where it is undervalued and disproportionately provided by women on an uncompensated basis. Allison Hoffman has applied these insights to reimagine public and private responsibility for long-term care, which is not covered by private health insurance or Medicare.^{Reference Hoffman81} In a work in progress, one of us (Wiley) is exploring the implications of universal vulnerability for proposals to expand access to public health care programs. Additional areas that would lend themselves well to vulnerability analysis include Medicaid work requirements and wellness programs that put the onus on insureds and public program enrollees to improve their health outcomes or have their coverage eroded.

The increasingly collective approach to health care financing in the United States begs important questions about which people and which conditions trigger a mutual aid response, questions with crucial implications for women, girls, gender and sexual minorities, and other historically marginalized groups. Legal scholars have paid particular attention to access to health care for women living with HIV/AIDS^{Reference Bobinski and Ahmed82} as well as women who access health care primarily through systems that segregate them from the mainstream population, such as women who are veterans,^{Reference Koo and Maguen83} and women who are incarcerated.^{Reference Arnold, Weatherhead and Chandler84} Medha Makhlouf has explored the application of the health justice framework, which has feminist roots, to health care access for immigrants, many of whom are excluded from public programs.^{Reference Makhlouf85} With regard to which conditions and which treatments should be collectively financed, the question of whether preventive care is included in the basket of covered services^{Reference Daniels86} is of crucial importance to women and girls, who are vulnerable to breast and cervical cancers for which prevention and early detection are essential. Several legal scholars, including one of us (Mohapatra), have examined the role of collective financing, state interests, and feminist engagement in access to reproductive health care for women and girls, which has been exceptionalized by being segregated from and subjected to heightened regulation compared to mainstream health care.^{Reference Rebouché, Blake, Mohapatra and Mohapatra87} Stacey Tovino has analyzed the implications of improved scientific understanding of post-partum depression for health law and policy, including interpretation of health insurance policy exclusionary clauses and mental health parity legislation.^{Reference Tovino88} Other scholars have questioned the exceptionalism of infertility treatment, which is often excluded from coverage by private insurers and public programs.^{Reference Faloon and Rosoff89} The groundbreaking work of these scholars — and many others we do not have sufficient space to mention — draws on feminist perspectives, and there is always more to be done.

Access to Healthy Living Conditions

In addition to determining “what we owe each other” with regard to medical treatment, the public-private divide — and feminist critiques of it — have implications for “social obligation[s] to protect and promote health” more broadly.⁹⁰ As Norman Daniels has put it, “social justice prevents ill health in more ways than through health care alone.”⁹¹ Thus, feminist commentary on the public-private divide also has implications for laws and policies that determine access to healthy living conditions and other social determinants of good health.

Heart disease, diabetes, and cancer are intuitively framed as “lifestyle” diseases: the result of autonomous choices by individuals, and thus a matter of private concern and personal responsibility.^{Reference Wiley92} Other health concerns, such as menstrual hygiene, have been rendered taboo and largely invisible within the public realm.^{Reference Winkler and Roaf93} As the government takes on a greater role in paying for costly medical treatment, the public's interest in preventing disease and injury grows.^{Reference Pope, Faust and Menzel94} At the same time, public health research is revealing the important role played by social, economic, and environmental factors — including racism, ableism, misogyny, homophobia, and transphobia — in constraining individual behavior choices and determining health outcomes. The result is an emerging debate over the legitimate scope of the government's role in ensuring access not just to health care, but to healthy lifestyles and living conditions as well. Increasingly, health threats like diabetes, heart disease, and menstrual hygiene are not simply viewed as personal failures to be addressed through clinical prevention, treatment, and education campaigns. As one of us (Wiley) has argued elsewhere, in the era of new public health, these are increasingly seen as public problems amenable to structural solutions.⁹⁵

While we embrace the potential of new public health law to address racial, economic, and gender-based disparities in health, we do so with a wary eye toward the potential for social biases to shape paternalistic interventions that do more harm than good. Historically, women, girls, and people with minority sexual orientations and gender identities have disproportionately borne the burden of paternalistic policies aimed at securing the public's health and welfare. The supposedly private nature of their choices about sexual practices (about sex work, use of prophylactics, and more) and their parenting choices (about risks during pregnancy, childhood vaccinations, giving children freedom to develop their independence, and more) does not shield them from government intervention intended for their own good (but harmful in practice).^{Reference Rogers, Parmet, Culhane and Burris96} This is true even as the supposedly private nature of the realms (e.g., homes, schools, workplaces, and religious communities) in which they [these marginalized groups] most commonly experience violence, unacceptably unsanitary conditions, and other forms of oppression insulates their oppressors (e.g., parents, intimate partners, superiors, and landlords) from consequences. The work of feminist public health ethicists, such as Wendy Rogers, offers a critical framework for probing the power differentials at play in the processes and substance of public health laws, policies, and governance.⁹⁷ The implications of the public-private divide for access to healthy living conditions merits further exploration from feminist health law scholars.