Mar 30, 2026 Maya Manian
For more than forty years, HIV/AIDS has been understood as a paradigmatic public health crisis. The HIV/AIDS crisis generated extraordinary social movement activism and resulted in significant public health reforms. Yet, the dominant narratives of AIDS too often marginalize women’s experiences and obscure how deeply feminist advocacy reshaped not only the law but also the science of AIDS. In Risk and Resistance, Aziza Ahmed offers a powerful corrective to the historical narrative surrounding AIDS while also provoking broader questions about the nature of scientific knowledge itself.
Risk and Resistance is history, theory, and warning. The book is at once a rich archive of feminism and AIDS, a sharp challenge to the myth of science as a purely objective, neutral domain, and a conceptual lens for understanding contemporary public health crises in the MAHA era. Through a meticulously researched genealogy of feminist AIDS activism from the early 1980s through the 2010s, Ahmed shows how feminist social movements reshaped scientific consensus, transformed public health law, and altered the material distribution of life-saving resources.
At its core, the book advances a deceptively simple but profoundly destabilizing claim: law and science are not objective domains that merely respond to disease. Rather, scientific and legal knowledge are co-produced through social struggle, and the “facts” that emerge from this co-production have concrete distributional consequences for who lives and who dies. Feminist AIDS activists, Ahmed shows, recognized that changing the law required redirecting scientific inquiry in new directions—and that changes in both science and law were necessary to redistribute health resources towards women living with HIV.
Feminist Activism and the Production of Scientific Knowledge
Ahmed begins the book with the story of Patricia Nalls and her family, a devastating account that anchors the book’s broader theoretical claims. Nalls, diagnosed with AIDS at a time when women were routinely excluded from clinical trials and diagnostic criteria, survived despite the profound failures of medicine and public health. Nalls survived not because the medical system recognized her needs, but because she mobilized community-based care, advocacy networks, and sheer persistence to secure treatment and benefits in a legal and scientific landscape that largely denied that women could even have AIDS. (Pp. 1–2.) Her story illustrates the book’s central historical theme: the systematic erasure of women from scientific and legal understandings of AIDS, and the life-and-death consequences of that erasure.
The book traces feminist AIDS activism from 1982 through 2013, documenting how women with HIV, feminist health advocates, lawyers, and activist organizations challenged the male-centric scientific framing of the epidemic. Women’s apparent increase in HIV/AIDS numbers was produced by changes in CDC definitions and surveillance practices, driven by feminist advocacy, which corrected systematic undercounting of women. (Pp. 1–3, 52-60.)
One of the book’s most compelling chapters follows the litigation and advocacy efforts that ultimately forced the Centers for Disease Control and Prevention to revise the medical definition of AIDS to include conditions experienced by women, such as gynecological conditions. This was not, Ahmed emphasizes, a case of law belatedly catching up to scientific progress. Instead, feminist legal advocacy actively reshaped medical knowledge itself.
This intervention disrupts a familiar trope in health law and social movement scholarship—that law lags behind science. As Ahmed demonstrates, feminist activists believed precisely the opposite: that litigation, regulatory advocacy, and legal framing could alter scientific knowledge production. Ahmed notes that: “For feminists organizing in the context of AIDS, the belief that law and advocacy can alter science (rather than simply rely on it) is central to the success of redistributional efforts in the context of public health activism.” (P. 34.) For feminists fighting AIDS, destabilizing claims of medical objectivity was essential to expanding eligibility for disability benefits, access to treatment, and recognition within public health institutions.
Law, Science, and Redistribution
Uncovering the story of how feminist health social movement activists changed the scientific and policy response to AIDS is a feat in itself. Yet, Risk and Resistance delves beyond historical recovery. Ahmed uses feminists’ long fight against AIDS as a case study to develop a broader theoretical account of how the fields of science and law co-produce new forms of knowledge and mutually reinforce choices about the distribution of resources. Drawing on science and technology studies and critical legal theory, she challenges the idea that legal regulation and scientific expertise occupy separate domains, with the former simply reliant on the latter. Instead, she adopts the framework of co-production, showing how governance and scientific knowledge mutually constitute one another.
This insight has particular force in public health law. As Ahmed explains, scientific framings of disease risk—such as attributing HIV vulnerability to individual behavior—can obscure structural determinants of health and justify interventions focused on personal responsibility rather than systemic, redistributional reforms such as harm reduction policies or expanding access to care. These scientific narratives, once stabilized through law and policy, legitimate unequal distributions of resources while appearing neutral and inevitable. Ahmed describes this process as a “legal-scientific settlement.” Her definition of this concept is important:
The term legal–scientific settlement describes how the stabilization of particular truth-claims results in new legal and regulatory regimes. I use the term ‘settlement’ to reflect the contingency and possibility for disruption. In these moments of legal–scientific settlement, law and science are coproductive of new facts and new knowledge ecosystems that are then generative of distributional outcomes (Pp. 145-146).
Ahmed’s aim in critically analyzing legal-scientific settlements is not to exacerbate mistrust in science. Rather, Ahmed asks readers to look behind the curtain of how scientific knowledge is produced—or co-produced—through its interaction with legal domains.
One of the book’s most striking contributions is its attention to how claims of scientific objectivity were mobilized during the Reagan era to contract the welfare state. By requiring physicians to validate disability claims, the federal government transformed medical expertise into a gatekeeping mechanism for benefits—rendering science itself a target of feminist activism. Feminist AIDS advocates understood that redistributive justice required contesting not only legal rules, but the epistemic foundations on which those rules rested.
Legal–Scientific Settlements and Contemporary Public Health
Ahmed’s conceptual framework of social contestation leading to “legal-scientific settlements” resonates far beyond AIDS. These settlements describe moments in which particular scientific claims become temporarily stabilized through lawmaking and regulation, generating new regimes of governance and distribution. Crucially, these legal-scientific settlements are contingent and thus remain contestable rather than fixed. The book illuminates how such settlements reflect political and economic choices, not natural facts.
Ahmed’s theorizing provides a remarkably generative tool for analyzing today’s public health conflicts in the MAHA era—whether over vaccine schedules, autism, or gender-affirming care—by exposing how claims of scientific neutrality are forged through law and revealing how law and science co-produce authoritative knowledge. Ahmed draws explicit connections to COVID-19, where scientific claims about risk and mitigation directly shaped the allocation of resources and the acceptance of mass death and disability. Narratives emphasizing personal responsibility, she argues, enabled the state to disclaim obligations to provide care—echoing earlier AIDS-era dynamics that stigmatized marginalized communities.
The book’s closing pages are especially haunting. As Ahmed notes, declarations that COVID-19 now poses a “diminished threat” coexist with the ongoing reality that thousands continue to die each week. These outcomes are not inevitable. They are the product of legal–scientific settlements that distribute vulnerability unevenly across populations. HIV, too, remains an unfinished epidemic—still without a vaccine or cure, still shaped by inequality.
Conclusion
Risk and Resistance makes major contributions to public health law, feminist and social movement theory, science and technology studies, and sociolegal scholarship. By centering feminist AIDS activism, Ahmed not only recovers a crucial history but also provides a toolkit for analyzing contemporary public health debates. The book challenges scholars to take seriously the ways social movements shape scientific knowledge and the ways law and science together legitimate that knowledge—and to confront how appeals to neutrality can entrench inequality.
For legal scholars accustomed to treating science as an external constraint, Ahmed’s account is bracing. It insists that redistribution often requires epistemic struggle, and that the law’s role in stabilizing knowledge carries profound ethical stakes. At a moment when public trust in expertise is failing, and public health crises are pitched battles, Risk and Resistance offers both historical insight and conceptual clarity. It is essential reading for anyone interested in how law, science, and social movements shape who is allowed to survive—and under what conditions.
Feb 27, 2026 Myrisha Lewis
The second episode of HBO’s Emmy-winning series, The Pitt, included a storyline where paramedics bring in a woman they describe as “drug-seeking,” “uncooperative,” and “combative” after she was removed from the city bus “for disrupting and disturbing passengers.” After a tense scene in the Emergency Department, where the patient was threatened with a police call, she excruciatingly noted that her pain medicine was not working, and she has sickle cell anemia. Dr. Mohan, unlike the other healthcare professionals that the patient encountered, quickly recognizes a vaso-occlusive crisis and changes the trajectory of the patient’s treatment for the better, while informing fellow healthcare providers of the symptoms of sickle cell anemia.
Hopefully, this episode raises awareness, as shockingly, even today, reports indicate that health care providers and others remain unfamiliar with sickle cell disease, and those with the disease or trait often face mistreatment and racism in the healthcare space, increasing health disparities. Similar to The Pitt episode, Professor Britney Wilson’s article, Predisposed: Race, Disability, and Death Investigations, draws attention to a related context where those with sickle cell and other diseases face discrimination—death investigators’ use of the trait and other related conditions “as a justification for the deaths of Black people who die due to state violence or neglect” even when such a justification is not convincing.
The first part of the article provides a theoretical background that situates the paper within the literature of racism, ableism, state violence, and state neglect. The terms “state violence” and “state action” are broadly defined and encompass phenomena like deaths in police custody and even the impacts of neglect during natural disasters, including Hurricane Katrina, the subject of numerous documentaries, with the hurricane landfall’s 20th anniversary occurring last year.
Part II “explores the history of the death investigation system.” Part II (A) provides information on the colonial origins of the death investigation system in the United States, and Part II (C) discusses the current roles of coroners and medical examiners. Part II.B briefly explains how legal causation, which “consists of two primary elements: actual cause and proximate cause,” connects to the decisions of coroners and medical examiners to cite “disability” in death investigations. Sections D and E of Part II, as well as Part IV, briefly describe the procedures governing autopsies and proposed reforms, which often focus on insulating death investigators from political pressure, hopefully, to facilitate a neutral determination of cause of death.
Part III, “Disability, Underlying or Preexisting Conditions as Causes of Death” addresses many specific examples from recent history in which death determinations have specifically referenced health conditions or genetic conditions that do not seem to have actually caused the death. Current law provides inadequate protections for individuals with genetic conditions like sickle cell anemia, Tay-Sachs, and Huntington’s disease. While the law provides some protections of individuals’ genetic information with respect to health insurance and employment, it does not adequately address the use of that information in death investigations.
Notably, as Professor Wilson’s article shows in Part III, simply having a genetic trait but not the genetic condition can impact causation in a death investigation, even when it should not. In turn, this can reduce the liability of an actor, especially a state actor. Despite the prevalence of sickle cell anemia, many individuals have the sickle cell trait, meaning one copy of the gene, not the two required for the disease. Moreover, generally, “people with sickle cell trait enjoy normal life spans with no medical problems related to sickle cell trait. Sickle cell trait can never become sickle cell disease.” For this reason, citing the mere existence of the sickle trait in death investigations is often unexpected and insufficient in articulating clear causation in a death investigation.
Similarly, in Part III, Professor Wilson’s article contributes to the environmental justice and disability literatures by noting that “people of color and people with disabilities are both disproportionately affected by the hazardous consequences of natural diseases…[and] are disproportionately likely to have preexisting or underlying conditions, such as heart disease or diabetes, to which death investigators often attribute their deaths even in the wake of natural disasters.” This observation should give everyone pause as the American Heart Association’s annually issued reports continue to indicate that “[h]eart disease kills more people than any other cause.” The Centers for Disease Control and Prevention note that “[h]igh blood pressure, high blood cholesterol, and smoking are key risk factors for heart disease.” Nearly half of all Americans have high blood pressure, and at least 10% of the American population either has high blood cholesterol or is a smoker, meaning many Americans have pre-existing conditions that investigators could inaccurately deem to be their causes of death. Moreover, climate change is expected to increase the number of natural disasters, which could harm individuals and property, with a disparate impact on minorities. It is worth noting that when including the Great Lakes and U.S. territories, “more than 129 million people, almost 40% of the nation’s total population, live in coastal counties.”
While poor health outcomes can clearly result from genetic conditions, as deaths of individuals, whether due to actions in state custody, natural disasters or simply poorer health outcomes continue (or possibly increase), Professor Wilson’s article reminds us of how important it is to be aware of how the legal system will ultimately allocate liability, whether in investigations, civil lawsuits, or criminal proceedings.
Jan 28, 2026 Jessica Lind Mantel
The phrase “hospital desert” sanitizes a brutal reality for millions of rural Americans: the closure of a local hospital means longer journeys for life-saving care, worse health outcomes, and the hollowing out of fragile local economies. While many commentators point to demographic changes and strained budgets as primary causes of this growing crisis, in her compelling new article, The Healing Power of Antitrust, Theodosia Stavroulaki argues that we have been misdiagnosing the problem. She shows that hospital deserts are also the product of anticompetitive practices and enforcement failures—noncompete clauses that drive clinicians away, hospital mergers that strip rural communities of services, and regulatory blind spots that treat closures as unavoidable. Stavroulaki calls for antitrust enforcers to embrace their “healing power” by addressing these practices head-on, proposing reforms that expand merger analysis to labor markets, ban healthcare noncompete agreements, and condition rural hospital mergers on commitments to preserve services. Stavroulaki thus shows that antitrust is not simply a tool for protecting consumer welfare, but can also advance health equity by addressing the geographic disparities that leave rural patients behind.
Stavroulaki begins by powerfully situating what is at stake with the rural hospital closure crisis. Rural hospitals serve communities that are poorer, older, sicker, and more likely to be uninsured. These communities also experience higher rates of chronic conditions, disability, and substance use. Unsurprisingly, rural communities rely heavily on their hospitals to meet their healthcare needs. Moreover, because hospitals are often the largest local employer—generating jobs, purchasing goods and services, and sustaining community life—many rural hospitals serve as their community’s economic anchor. When a rural hospital closes, the resulting hospital desert can devastate the community, endangering lives and destabilizing the local economy.
Part II of the article then reviews various policy interventions designed to ameliorate the hospital-closure epidemic, namely telemedicine, Medicaid expansion, and health-promotion programs. While acknowledging their importance, Stavroulaki concludes that these measures are ultimately insufficient because they fail to address the deeper, structural causes of these closures —hospitals’ anticompetitive business practices.
Part III turns to the article’s distinctive contribution: reframing the rural health crisis as an antitrust problem. Stavroulaki traces hospital deserts to both the output and input markets. On the output side, she explains that while hospital systems may justify their acquisition of smaller rural competitors on efficiency grounds, in reality, many wish to eliminate their rural competitors and consolidate market power. Post-merger, acquiring facilities are often closed or stripped of essential services like obstetric, psychiatric, or emergency care.
On the input side, Stavroulaki delivers an astute analysis of labor market monopsony, showing how consolidation gives hospital systems immense leverage as the primary employer of clinicians in a region. That power is used to suppress wages and impose burdensome working conditions, fueling physician burnout. It also enables the widespread use of noncompete agreements that trap doctors and nurses. By preventing clinicians from simply moving to nearby healthcare facilities, noncompetes exacerbate the very staffing shortages that make rural hospitals so vulnerable, often forcing unhappy professionals to either leave the region or the healthcare workforce altogether.
By weaving together these output and input effects, Stavroulaki underscores how consolidation and anticompetitive practices contribute to the hospital desert crisis, setting the stage for the antitrust remedies she develops in Part IV.
Part IV turns from diagnosis to prescription, showing how antitrust enforcers can use existing law to stem the rise of hospital deserts. Stavroulaki begins with noncompete clauses, offering a nuanced analysis as to why restraints that prevent clinicians from practicing in nearby communities should be treated as per se violations of Section 1 of the Sherman Act. Importantly, her arguments enrich the ongoing debate over noncompete agreements sparked by the Federal Trade Commission’s 2024 proposal to prohibit such agreements and a federal district court decision striking down the FTC’s rule.
Turning to hospital mergers, Stavroulaki argues that Section 7 of the Clayton Act should be interpreted to capture monopsony power in healthcare labor markets, and not simply monopoly power in output markets like the price and quality of hospital services. She therefore calls for hospital merger reviews to assess the merger’s impact on clinicians’ wages, working conditions, and flight from rural communities. Stavroulaki further urges antitrust regulators to broaden their focus beyond price effects alone and condition approval of rural mergers on commitments to keep acquired facilities open and preserve essential services. These proposals are especially timely as the Department of Justice and the Federal Trade Commission reconsider their hospital merger framework following the withdrawal of their long-standing healthcare merger guidelines.
Over 130 rural hospitals have closed since 2010, with experts warning that more than 600 others are at risk of closure. In this moment of profound crisis for rural health, The Healing Power of Antitrust shows how antitrust law can be more than a safeguard for excessive prices—it can be a tool for preserving the hospital institutions that are the lifeblood of rural communities. By both showing how anticompetitive practices can lead to hospital deserts and offering a concrete agenda for enforcement, Stavroulaki shifts the conversation around rural healthcare beyond demographic changes and reimbursement to the hidden role of market power. Doctrinally innovative and profoundly timely, her article offers a compelling vision of how antitrust law can help close the geographic gaps that perpetuate inequities in health access and outcomes.
Dec 16, 2025 Wendy Epstein
Sharona Hoffman & Ishani Ganguli,
Access to Primary Care and Health Care Fragmentation, __
U. Ill. L. Rev. __ (forthcoming 2026), available at
SSRN (Feb. 01, 2025).
Primary care has long been described as the cornerstone of a functioning health system. Yet, in the United States, it is a cornerstone under strain. Patients who seek appointments with primary care physicians (PCPs) often wait weeks or months before they can be seen. Faced with these delays, many turn to urgent care centers, retail clinics, direct-to-consumer telemedicine platforms, or even at-home testing kits. While these alternatives offer quick access, they come at a price: fragmented care that sacrifices continuity, coordination, and comprehensiveness.
Sharona Hoffman and Ishani Ganguli’s article, Access to Primary Care and Health Care Fragmentation, argues that long wait times and the resulting fragmentation are not only health policy problems but also legal problems. They make the case that the combination of shortages and fragmentation undermines equity, drives up costs, and creates liability exposure under both tort and anti-discrimination law. Their insightful dual framing is compelling: primary care access failures threaten patient outcomes, but they also expose providers and health systems to lawsuits and regulatory scrutiny.
Traditionally, delayed or missed diagnosis claims arise where a patient has an ongoing relationship with a physician who fails to detect or follow up on concerning symptoms. But Hoffman and Ganguli argue that excessive wait times and fragmented care might create liability risks even when no such continuous relationship exists. A patient bounced among urgent care, retail clinics, and telemedicine providers may never have a single physician responsible for their longitudinal care. In those cases, fragmentation complicates questions of duty and causation — who, if anyone, is accountable when no one provider “owns” the patient’s trajectory? The authors suggest that under the right set of facts, these structural access barriers could create legal exposure.
They also identify anti-discrimination law as a potential source of liability. Long wait times do not burden all patients equally. Low-income individuals, racial and ethnic minorities, and those in rural areas are disproportionately affected, since they often have fewer PCPs in their communities and less flexibility to seek out alternatives. Hoffman and Ganguli suggest that if health systems or insurers are aware that their appointment practices disproportionately disadvantage vulnerable populations, yet do nothing to address the problem, that indifference could expose them to liability under federal civil rights statutes. Here, their analysis dovetails with broader debates in health law about structural discrimination and disparate impact. It also raises provocative questions about whether equity can be achieved in a system that places timely primary care out of reach for many of those who need it most.
Beyond liability, the authors also note that fragmentation in primary care is a hidden cost driver. Policymakers often assume that urgent care or telemedicine saves money by diverting patients from emergency departments. On the contrary, the article shows that fragmented encounters frequently duplicate tests, generate overlapping prescriptions, and increase downstream costs when preventive opportunities are missed. The economic argument reinforces the doctrinal one: when health systems push patients into disjointed care pathways, they not only compromise safety and quality but also waste resources and erode trust. This framing challenges conventional wisdom about “convenience care” and highlights how systemic incentives, left unchecked, may undermine the very efficiency they purport to achieve.
But running throughout the article is also an insistence that equity must remain at the forefront. The burden of long wait times falls hardest on those with the least access to resources, amplifying disparities that already exist in American health care. Fragmentation is not neutral: it disproportionately affects patients who already struggle to navigate the system, resulting in disjointed, duplicative, and ultimately less effective care. By centering these inequities, Hoffman and Ganguli remind us that primary care shortages are not only a cost and liability issue, but also a justice issue.
Hoffman and Ganguli thoughtfully explore solutions. They suggest that value-based payment models can give PCPs the resources and incentives to shorten appointment wait times and reduce fragmentation, for example by supporting the use of artificial intelligence to ease documentation burdens or by encouraging more effective scheduling strategies. They also examine state laws that directly regulate appointment wait times, critiquing their limitations and recommending clearer standards, potentially through federal legislation. Finally, they address structural capacity issues — including the limited number of primary care residencies and the financial and professional disincentives that make the field less attractive — and propose reforms to build the workforce over time. While the article acknowledges that no single intervention will suffice, it calls for a multi-pronged approach in which legal and regulatory levers play a central role.
Access to Primary Care and Health Care Fragmentation makes a valuable contribution by drawing connections between primary care shortages, liability exposure, systemic costs, and policy reform. The crisis of primary care is often framed as a problem of supply and efficiency, but Hoffman and Ganguli show it to be equally about liability, the true financial costs of fragmented care, and, most importantly, justice. For health law scholars, the piece highlights emerging doctrinal questions about malpractice and discrimination in fragmented care environments. For policymakers, it offers a roadmap for using law to rebuild primary care as the true foundation of U.S. health care.
Hoffman and Ganguli thus deliver both a warning and a vision. The warning: that without reform, primary care shortages will deepen inequities, raise costs, and undermine trust in the health system. The vision: that law can be harnessed to realign incentives, protect vulnerable patients, and restore primary care to its rightful place at the heart of American health care.
Nov 18, 2025 Christina S. Ho
Himani Bhakuni and Lucas Miotto have teamed up to place a useful concept in our midst, namely the concept of Transitional Health Justice (THJ).
They draw upon the scholarship concerning Transitional Justice, which can be roughly understood as an extension beyond “ordinary justice” to encompass “the full range of processes and mechanisms associated with a society’s attempts to come to terms with a legacy of large-scale past abuses.” Transitional justice is not demanded when a society undergoes a smaller-scale disruptions, such as isolated episodes of disaster or armed conflict. After such events, society’s goal might plausibly be described as restoration after an aberrant event. But other ruptures go to the foundations of collective life, after which justice cannot be done by merely returning to the status quo ante, if indeed there is anything left to return to.
In the wake of the pandemic and rampant health disinformation, amidst the necropolitical horrors of the U.S. carceral security state run amok, given DOGE and the recent reconciliation bill’s plundering of our medical science and health infrastructure top to bottom, Bhakuni and Miotto’s call to train a transitional justice lens onto the crises in our health domain rings particularly urgent.
Accounts of health justice tend to focus on the justice of the health system we might envision, but the distance between this ideal and our previous normal, not to mention the distance from our current circumstances, can seem daunting. Bhakuni and Miotto help us map the preconditions of justice required to get from here to there. For instance, rather than rampant denialism, we need “acknowledgment and redressal of mass scale human rights violations that are markers of broken health systems.” (HHR 86.) We need to foster trust, reset norms, and nurture a shared understanding that enables people to inhabit new roles, new duties, and new social relations in the new system.
Colleen Murphy has identified four circumstances that characterize a society in need of transitional justice, and Bhakuni and Miotto have adapted that framework as four circumstances of transitional health justice: “(i) pervasive structural inequality, (ii) normalized collective and political wrongdoing, (iii) serious existential uncertainty, and (iv fundamental uncertainty about authority.” (Transitional Health Justice P. 218.) I argue the U.S. meets those now.
First, the presence of pervasive structural inequality seems inarguable. The persistent racial inequality of our health system and all the stratification exacerbated by COVID already signaled moral and practical crisis. The reconciliation bill that Trump recently rammed through Congress features a near-trillion dollar raiding of Medicaid to fund tax cuts for billionaires. Meanwhile border enforcement brutalizes, abuses, and denies needed medical care, targeting racial, ethnic, or religious minorities.
Second, the U.S. health system suffers from normalization of collective or individual wrongdoing. Such conditions, in Bhakuni and Miotto’s words, “erode faith in systems that govern…health and create a sense of helplessness. This can only be repaired with a change in the social relations between citizens and their public health systems, which would essentially require a transformation.” (Transitional Health Justice P. 221.) It is little wonder that patients have lost trust in the health system, given Trump, Robert F. Kennedy Jr., Roy Bhattacharya and others’ role in normalizing COVID and vaccine denialism, when in the post-Dobbs world, one’s ob-gyn may be restricted from providing life-saving reproductive health care, and when doctors are routinely conscripted by for-profit health insurers like United HealthCare to the project of denying needed coverage. All these corruptions and distortions corrode patient trust and inflict moral injury upon the providers facingpervasive pressure for wrongdoing.
A situation that calls for THJ is also one where people experience serious existential uncertainty; indeed, we now face constant heightened anxiety about our health. Apart from the epidemic of gun violence, the Trump Administration is simultaneously seeding future mass casualty events by defunding health care, dismantling FEMA, undermining vaccination, hobbling TSA, and eliminating weather forecasting capabilities. Add to all that ICE’s masked kidnappers and concentration camps, and the label “existential uncertainty” seems no overstatement. It is hard to deny that the infrastructure on which our health and security depend cannot be sustained and verges on collapse.
And finally, the circumstances of THJ exist when we have lost faith in the legitimacy of authority in our systems of health and safety. I don’t think my health law colleagues need much convincing that these circumstances are amply satisfied. RFK Jr. has fired the seventeen members of the Advisory Committee on Immunization Practices, threatened to fire the US Preventive Services Task Force, dismantled FDA, and shows no signs of stopping there.
With each of Bhakuni and Miotto’s THJ circumstances met, what then will provide the kind of Transitional Health Justice that is so clearly called for in our times? While TJ commonly prescribes a number of tools, including truth commissions, apologies, reparations, and accountability, such as “ineligibility for office, or other legal disabilities on the old regime’s adherents,” it is up to us to further specify what THJ requires in response.
Bhakuni and Miotto supply some clues when they declare, “THJ demands that whatever contributes to the circumstances of THJ be transformed—that the circumstances of THJ come to an end.” (HHR 85.) This formulation means that the objects of THJ are beyond the health system itself. I like that this frame points us not to individual or incremental but rather structural changes. And it gives us a reason why those structural changes, even if outside the health system, must be care-first. In other words, they must be designed and conducted with health in mind because it is transitional health justice that on the table. So the kind of Supreme Court, Executive Branch, and Congressional reforms we consider should be envisioned with an eye to whether they provide care and promote flourishing. Just as Gregg Gonsalves and Amy Kapczynski in the depths of the pandemic called for a New Politics of Care, Bhakuni and Miotto now draw from a different literature to sound the same call, and I take the chance here to amplify it.
Cite as: Christina S. Ho,
Transitional Health Justice and a Care-First Response to Our Times, JOTWELL (November 18, 2025) (reviewing Lucas Miotto & Himani Bhakuni,
Justice in Transitioning Health Systems, 25
Health & Hum. Rights J. 83 (2023); Himani Bhakuni & Lucas Miotto,
Transitional Health Justice,
in Justice in Global Health: New Perspectives and Current Issues 216 (Himani Bhakuni & Lucas Miotto eds., 2023)), https://health.jotwell.com/transitional-health-justice-and-a-care-first-response-to-our-times/.
Oct 16, 2025 Trudo Lemmens
Internationally, pressure to legalize or expand euthanasia and assisted suicide is mounting, primarily in industrialized countries. France and the UK are two major jurisdictions that are currently considering legislating some form of what is now often referred to as “assisted dying.” Amid the UK debate on a private member’s assisted suicide bill currently before the House of Lords, Jennifer Hardes Dvorak’s recent article, Is Assisted Dying Really A Matter of Medical Regulation?, raises crucial—yet often overlooked—questions related to the role of medicine: Should assisted suicide and euthanasia be regulated as medical practices? What are the implications of involving medical professionals?
Dvorak offers a nuanced analysis—grounded in empirical evidence from existing regimes—of the problems with medical models of ‘assisted dying’. These are models in which physicians (and in some countries also nurses) play an essential role as prescribers, or as those providing a lethal injection, and in which medical criteria determine whether a person obtains access. She also discusses whether what is often treated as a ‘demedicalized’ model, like Switzerland, where assisted suicide is organized by volunteer organizations with only a limited role for physicians, offers a better approach. Her paper presents a balanced review of regulatory approaches and highlights the complexities of interpreting evidence in this polarized debate. The paper makes a compelling argument about the challenges with medical models of assisted dying, while also acknowledging that a demedicalized system of legalized assisted dying is not unproblematic.
Dvorak identifies four key issues complicating the regulation of legalized assisted dying: pragmatic concerns about physician involvement, the effects of medicalization, the intersection of medical and criminal law, and health economic pressures.
Discussing the practical challenges, she notes that integrating assisted dying into medical regulation can impact in very contrasting ways. On the one hand, it may hinder access due to conscientious objection and the emotional burden it places on physicians. On the other hand, it can open the door to overuse, particularly through “doctor-shopping.” She gives the example of a woman whose Alberta physicians diagnosed her with a treatable reaction to mental health medication, which would have made her ineligible for ‘Medical Assistance in Dying’ [MAiD], but who was approved by out-of-province British Columbia physicians after an online consultation. An injunction ultimately blocked the BC provider from ending her life. But there is now even another court case which documents how a provincial health authority explicitly facilitated, and even organized doctor-shopping. In this case, a young woman’s MAiD request had been blocked twice after only one assessor of the two assessors in two subsequent requests considered her eligible, but the Alberta health authorities then appointed the first assessor as the tie-breaker for the second request. The young woman, according to her father, had autism and otherwise no diagnosed illness. Dvorak also notes, as a pragmatic issue, how institutional culture, and bullying, may result in additional pressure on physicians to participate in MAiD, further undermining the notion of professional independence. This has indeed also been documented in the Canadian context.
Dvorak’s deeper engagement with the concept of ‘medicalization’ is particularly compelling. Drawing on sociological literature, she illustrates how assisted dying regimes transform dying into a medical procedure—an issue that is often overlooked by commentators who claim that assisted dying empowers people in the face of overbearing medical practice. While medicalization is sometimes presented as a means of destigmatizing death and delineating the practice through the identification of medical access criteria, Dvorak is skeptical of its overall benefits. She discusses how the vagueness of medical criteria tends to lead to bracket creep and often results in expanding the practice beyond its original intention. Her point that medicalization can individualize social problems—masking structural inequalities—is especially powerful.
Dvorak examines as examples of bracket creep the expansion of euthanasia for mental illness in the Netherlands, and Canada’s broadening of eligibility beyond the end-of-life context. It is not a coincidence that in the two jurisdictions she selected, most cases of assisted dying are euthanasia cases (thus involving deadly injections), and in both jurisdictions there never was an explicit restriction to a terminal illness with limited survival prognosis. The developments in those jurisdictions highlight, according to Dvorak, how medicalized regimes can normalize and expand assisted dying in ways that risk obscuring structural harms. Interestingly, more recent evidence in both jurisdictions, not yet discussed in the paper, provides further support for her argument. Dutch experts have recently raised the alarm about the striking increase in cases of euthanasia for mental illness among very young people, particularly women. With respect to Canada, several Ontario coroner reports, of which she cites one, now confirm how even suffering directly resulting from structural inequalities and lack of support and only vaguely connected to a medical condition, has been transformed into a medical problem for which euthanasia is now considered a therapy. Dvorak further questions whether a healthcare system’s promotion of assisted death as medicine can be reconciled with key public health goals of improving people’s lives and alleviating the health impact of structural inequalities.
But Dvorak is also attentive to the limitations of models that claim to avoid medicalization altogether. The article further nuances convincingly the claim that the Swiss model of assisted suicide is fully ‘demedicalized,’ and argues why this model is also not without problems. Discussing recent case law, she shows how it operates in a grey zone. Prescription practices are still regulated by the state and the medical profession, and the criminal law still applies in the margins. Dvorak expresses caution about embracing this model as a solution to the concerns raised by more medicalized assisted dying regimes, particularly given the challenges related to transparency and oversight, and the difficulties of using the criminal law to delineate the practice.
In her final section, Dvorak emphasizes the importance and real challenge of addressing the broader social context in which assisted dying operates. As she notes, “Decisions to medicalize AS/E are not neutral; instead, they are heavily laden social decisions.” She highlights how economic pressures on patients, families, and healthcare systems influence these choices, and questions whether medical professionals can adequately evaluate such complex decisions: “Expecting all medics to be sociologists and ethicists, on top of already overburdened workloads may be too much to ask.”
Dvorak explicitly leaves open whether a fully ‘demedicalized’ model is to be preferred. In concluding, she retreats to what is perhaps an overly familiar response: calling for more data collection and improved oversight. Her recommendation that regulation must ‘ensure voluntary choice’ is obviously important, but she understandably offers no clear solution how to ensure that, in light of the impact of structural inequality, and considering the failures of current systems.
A recent British Medical Journal commentary puts more bluntly that “[a]ssisted dying is an existential matter rather than a treatment matter.” Its authors argue that integrating any form of assisted dying into medicine risks undermining healthcare practice and medico-legal doctrine. Perhaps legal scholars should more readily acknowledge, in the face of mounting evidence, that existing assisted dying regulations are really causing irreversible harm, without feeling the need to suggest vague and perhaps unrealistic solutions under the guise of pragmatism. Still, Dvorak’s paper enriches the debate with a thoughtful, balanced, and evidence-informed critique of the challenges facing legalized assisted dying regimes, both medicalized and ‘demedicalized’ alike.
Sep 18, 2025 Amy Monahan
Wendy Netter Epstein & Christopher T. Robertson,
Can Legal Knowledge Save Lives? A Randomized Experiment in Preventative Health Screenings, available at
SSRN (June 25, 2025).
Despite the Affordable Care Act’s fifteen-year-old mandate for full coverage of preventive care, potentially life-saving cancer screenings remain persistently underutilized. In Can Legal Knowledge Save Lives? A Randomized Experiment in Preventive Health Screenings, Professors Christopher Robertson and Wendy Netter Epstein delve into this critical health policy puzzle and present the results of a survey that aims to uncover the extent to which ignorance about the legal requirement for free preventive care contributes to underutilization and whether experience with medical debt might also play a role.
The literature has long established that individuals in the United States receive recommended cancer screenings at suboptimal rates and that cost concerns play a role in that outcome. The ACA’s preventive care mandate was explicitly designed to address this piece of suboptimal utilization by removing cost from the equation. It is doubtful that free coverage would entirely remove barriers to care, as the screenings themselves often come with some discomfort and inconveniences. Yet, it is crucial for lawmakers and health policy stakeholders to understand whether and to what extent law can help move patients toward optimal utilization by examining the extent to which individuals covered by health insurance actually understand the coverage terms that might influence their care decisions.
Robertson and Epstein’s experiment is designed to test two distinct hypotheses. First, that informing insured individuals who have not received at least one recommended cancer screening that such screenings are not only recommended but free of charge will increase their likelihood of undertaking the screening and, second, that individuals with current or past medical debt will be less likely to pursue missed cancer screenings if they are first primed to think about their medical debt before indicating their willingness to seek out screening. Robertson and Epstein ultimately found that a “free care disclosure”—informing individuals that most plans cover breast, cervical, and colorectal cancer screenings in full with no patient cost sharing—increased the likelihood of taking steps toward screening by five percentage points, from 42% to 47%. While the overall numbers may appear modest, a population-wide increase of 5% in recommended cancer screenings could lead to significant gains in cancer survival. Interestingly, medical debt priming did not influence screening behavior, and that result held at all levels of medical debt.
The survey was limited to moderate income individuals with health insurance coverage who, based on age and sex, were eligible for colorectal, breast, or cervical cancer screenings but had not received at least one of those recommended screenings. Participants were randomly assigned to one of two main treatment groups to investigate whether fee disclosure or medical debt salience influenced the likelihood of pursuing recommended cancer screening. In the first treatment group, half of the respondents were informed that the ACA provides that, for most plans, these cancer screenings must be covered in full by the health insurer. The other half of this group received no information on the preventive care mandate. Both groups were asked whether they would like a link to assist them in obtaining the recommended screening, which was the main outcome measure for the study. In the second treatment group, half of the respondents were first asked various questions about their own medical debt history before being asked whether they would like the screening link. The other half of this group was asked about their medical debt only after they had indicated their desire to take a step toward screening by requesting the link, with the idea being that priming an individual to think about medical debt might influence their willingness to interact with the health care system for discretionary care. Respondents in both treatment groups were also asked various survey questions about their reasons for not previously getting a recommended cancer screening and their attitudes toward the health care system.
The primary finding of the experiment, that fee disclosure can meaningfully increase the likelihood of pursuing cancer screening, suggests that such disclosures could be a meaningful policy intervention if broadly implemented. But, as the authors acknowledge, doing so is more difficult than it might appear. Disclosing fee information is complex for a number of reasons, even with something as relatively straight forward as routine cancer screenings. First, not all forms of health insurance are subject to the preventive care mandate, so a blanket statement that such services are covered in full will be inaccurate. And being informed that “most” plans must cover these services in full may not be sufficient to overcome genuine cost concerns. Health plans may also place certain limitations on preventive care services, including not only network requirements but also restrictions on the scope of the screening itself, such as covering only traditional mammography and not 3D/digital breast tomosynthesis imaging. In addition, as Robertson and Epstein’s survey reveals, one of the top reasons that individuals forgo recommended screenings in the first place is not just the cost of the screening itself, but also the cost of any necessary follow-up care. For example, a woman who receives abnormal mammogram findings might be told to follow up with either an ultrasound or biopsy. But those services would be diagnostic in nature rather than preventive, which means they would be subject to the plan’s ordinary cost-sharing rules. One stark finding from the survey is that 80% of participants agreed with the statement that “going to the doctor or hospital can be dangerous financially” – a finding that is perhaps not surprising given the intricacies of both legal requirements and health insurance coverage terms.
The article presents many other interesting findings in addition to those I have just highlighted and is an important contribution to the literature on medical utilization decisions and the impact that health insurance literacy has on those decisions. More broadly, this research serves as yet another important reminder of the very real costs of our health care system’s complexity.
Editors note: Reviewers choose what to review without input from Section Editors. Jotwell Health Law Section Editor Wendy Netter Epstein had no role in the editing of this article.
Aug 5, 2025 Nadia Sawicki
Maxine Eichner, Mara Buchbinder, Abby Schultz, Cambray Smith & Amy Bryant,
The Inevitable Vagueness of Medical Exceptions to Abortion Bans, __ U.C. Irvine L. Rev. __ (forthcoming), available at
SSRN, (April 22, 2025).
Prof. Maxine Eichner and her co-authors at the University of North Carolina have written a first-of-its kind empirical study and legal analysis that sheds light on the challenges doctors face in interpreting and applying “emergency exceptions” to state abortion bans. In The Inevitable Vagueness of Medical Exceptions to Abortion Bans, they present the findings of in-depth interviews of thirty-five maternal fetal medicine (MFM) physicians in the Southeast United States post-Dobbs, revealing “recurring patterns that create indecision regarding whether statutory exceptions will shield doctors from suit.” They use their empirical findings in support of a robust constitutional argument that state abortion bans with exceptions for medical emergencies are unconstitutionally vague.
Cases like those of Amanda Zurawski in Texas – who experienced preterm premature rupture of membranes (PPROM) at 18 weeks and did not receive an abortion until she developed sepsis three days later and one of her fallopian tubes had closed, compromising her future fertility – and Amber Thurman of Georgia – who died of septic shock because doctors waited 19 hours to remove fetal tissue from a self-managed medication abortion – demonstrate with brutal clarity that abortion ban carveouts for medical emergencies do not effectively protect patients experiencing obstetric emergencies. Troublingly, some legislators and judges in abortion ban states have placed the blame on physicians for these tragedies, arguing that pro-choice doctors are intentionally misinterpreting these laws to make a political point at the expense of patient health and safety. Eichner et al’s robust research demonstrates that this couldn’t be farther from the truth. These statutes, written by legislators with no medical expertise or understanding of the nuances of obstetric emergencies, are so ambiguous that physicians struggle to understand their meaning. And when the penalty for unintentionally violating an abortion ban might be life in prison, it is understandable that these laws have a chilling effect on well-meaning obstetric providers who want to preserve their patients’ health.
The physicians the authors interview highlight several concrete challenges they face in interpreting and applying abortion laws in obstetric emergencies. The overarching challenge is that these statutes are unclear about the degree of medical risk a patient must be facing in order for her condition to qualify as an emergency. According to one physician interviewed, “Nobody knows what the law means until a judge interprets it. So, until you get in front of a judge, it’s just words on paper.”
Uncertainties regarding the level of medical risk required for a condition to rise to the level of an emergency under state law arise from legislatures’ use of language like “necessary to prevent the death” or “save the life” of a pregnant patient. The physicians interviewed pointed out that risk is impossible to predict with certainty in any medical context, can change over time, and varies depending on numerous case-specific factors. The language in abortion statutes, however, not only presumes that it’s possible to predict with certainty the progress of a patient’s condition, but also suggests that the risk needs to approach 100% in order for the abortion to be legally permissible. According to one doctor, “The law was written so poorly, that we couldn’t tell what it meant, like what is dangerous, what counts as lethal. Nothing is 100% lethal, so nothing qualified.” One physician, for example, treated a patient with a cardiac condition that posed a 20-30% risk of heart failure if she continued with the pregnancy. Although medical standards would advise counseling the patient about termination and letting the patient decide, the doctor was unable to do that because (in consultation with hospital counsel) she “ultimately determined that level of risk was insufficient to meet the [state law’s] maternal life exception.” Similar vagueness challenges arise with statutes that permit abortion to prevent “serious health risks,” not just life-threatening emergencies.
Even in cases where doctors feel certain that a patient’s condition rises to the level of risk that would authorize emergency termination under state law, “they were often uncertain about when to perform the abortion in order to comply with statutory requirements.” In cases of infection, for example, a patient can decline into sepsis in a matter of hours, and early intervention is essential to minimizing risk. But physicians, bound by state laws, end up in situations like this: “I watched this woman … she broke her water, she was 17 weeks, she didn’t want to go home … So, we just let her sit on our floor and I just watched, her temperature went up and then her white count went up … And I was like, how long do I have to sit here and watch this before I’m allowed to do something?” The narratives collected by Eichner et al are consistent with quantitative evidence – for example, a 2022 study of patients with pregnancy-related complications at Texas hospitals found that patients waited on average nine days between presenting with complaints and finally receiving medically necessary abortion after the state legislature passed SB8.
Eichner et. al rely on their empirical findings to make a robust argument that because these laws don’t give adequate guidance as to when emergency abortions are lawful, they violate the constitutional prohibition on vagueness. They argue that although Dobbs eliminated the constitutional right to abortion, these laws nevertheless implicate the fundamental right to life and therefore should be subjected to heightened scrutiny.
Some commentators have argued that it is impossible to craft a statute that clearly and effectively outlines the circumstances in which emergency abortions are permissible. Eichner et al agree to some extent, recognizing that abortion “is too complicated to be regulated without risking the lives and health of pregnant persons.” However, they conclude the article by offering a creative proposal for what they refer to as “least-vague abortion exceptions.” Such exceptions would be “clear enough to physicians that they would pass void-for-vagueness standards, significantly reduce chilling, and save some pregnant persons’ lives.” Key elements of their proposed statute include a non-exhaustive list of conditions that satisfy the legal standard, clarification of issues relating to risk and timing, deference to physicians’ good faith medical judgment, and the absence of criminal penalties. The authors’ arguments and proposal are an important starting point for further conversation about the practical implementation of state abortion laws.
Cite as: Nadia Sawicki,
Emergency Abortion Laws: Vague by Design, Lethal in Practice, JOTWELL
(August 5, 2025) (reviewing Maxine Eichner, Mara Buchbinder, Abby Schultz, Cambray Smith & Amy Bryant,
The Inevitable Vagueness of Medical Exceptions to Abortion Bans, __ U.C. Irvine L. Rev. __ (forthcoming), available at SSRN, (April 22, 2025)),
https://health.jotwell.com/emergency-abortion-laws-vague-by-design-lethal-in-practice/.
Jul 4, 2025 Zack Buck
For better or worse, employers have long had a vital but understated role in health care access and policy in the United States. In Employers and the Privatization of Public Health, Professor Sharona Hoffman draws on this context to catalog and illuminate American employers’ roles during a public health emergency. Recognizing the important work of private employers as part of the public health infrastructure and using the COVID-19 pandemic as a focus of the piece, Hoffman persuasively argues for treating employers as the indispensable partners they are when it comes to public health interventions and goals.
In the piece, Professor Hoffman walks the reader through the traditional role of government in public health efforts and the recently diminished reach of traditional governmental power, and provides examples of domains where employers have traditionally been involved in the goals of generally furthering health. These include the interest in workers’ health, the American employer-based health insurance system, wellness programs,, and employee assistance programs—all areas of sustained employer activity.
Notably, Professor Hoffman takes time to work through the legal constraints and incentives for employers as they relate to relevant federal and state laws. It is here that she highlights both the Americans with Disabilities Act (ADA) and Title VII of the Civil Rights Act of 1964, which prohibit employers from discriminating against employees. As for state laws, Professor Hoffman provides examples of laws that prohibit disability discrimination and other laws that address the permissibility of employers’ pandemic response measures in the context of COVID-19.
There are, of course, limitations in empowering employers to pursue public health measures. As Professor Hoffman acknowledges, private employers are not affected by federal constitutional provisions and may be negatively impacted by political beliefs or public pressure campaigns that could limit their effectiveness in this space. In addition to running afoul of rules that would make them state actors, there is a concern that employers may simply not implement measures that are geared toward protecting public health. Instead, with their primary interest being economic, they might fail to appropriately balance public health interventions with their own bottom line.
In the final section of the piece, Professor Hoffman leaves the reader with clear recommendations and a call to embrace employers as public health partners by pointing to employers’ extensive experience and expertise in this space (drawing on examples of employers promoting wellness initiatives or conducting drug testing). Further, Hoffman argues that employers have a real interest in making sure their workers are healthy. This allows them to compete for top-notch talent, avoid the negative impacts of a sick workforce, and address health disparities that exist. In this way, Professor Hoffman encourages the federal government to both offer guidance and provide financial support and incentives for employers to operate in this space.
Professor Hoffman’s piece is a pragmatic reminder about the importance of broadening policy interventions to expand beyond the monolithic action of a sprawling and multifaceted government. Her piece also skillfully avoids the combative rhetoric that has characterized the fight over public health interventions. By placing the focus on the “who,” such a disparate and unique actor as an employer, Hoffman avoids the tired arguments of the “what”—that is, the bitter fights over what kind of public health interventions are allowed, allowable, and defensible. Also, by tying the public health intervention to the bottom line of the employer, Hoffman can recast controversial state-based mandates into employer self-interest, which she can skillfully deploy to achieve a wide swathe of societal agreement.
Perhaps her most interesting suggestion is her push for the federal government to use its taxing and spending powers to encourage and incentivize employers to undertake the hard, in-the-trenches work of safeguarding their employees during a future public health emergency. This, of course, might avoid the societal backlash that often follows state-mandated interventions. These suggestions may not be perfect—Professor Hoffman acknowledges that employer-based actions will lack universality and fail to reach every American—but she convincingly argues that “employers can fill many of the voids left by recent pandemic legislation and jurisprudence.”
Professor Hoffman’s work is always enlightening, and this piece posits a direct thesis and makes a broad, persuasive point. And, coming out of the COVID-19 pandemic, while the hope is that her suggestions will not need to be implemented anytime soon, they are welcome additions to the literature in this space.
Jun 9, 2025 Emma Cave
Dr Rageshri Dhairyawan calls on health professionals to improve their capacity to listen to patients. Published on the front page of the Lancet in February 2025, NHS consultant and researcher Dhairyawan’s essay ‘Reflect, Collaborate and Listen’ draws on some of the key ideas set out in her book: Unheard: the Medical Practice of Silencing (2024).
I grew up in a small village in England, which boasts its own surgery thanks to my father and his practice. There was a strong pastoral element to his and his team’s clinical roles. My childhood recollection of the waiting room was of people chatting and laughing, leaving me wondering if there was anything the matter with them at all. Sometimes, patients would come to the house and seek advice in our front room. Once or twice, they even brought poorly animals. Sometimes he’d receive a phone call and rush out to a remote farm because he’d likely arrive before the ambulance. By listening to his patients and building relationships with them and their families over time, he gained trust and respect, and was, in turn, listened to.
Today the “family doctor,” whose role it is to understand the patient in the context of their family relationship, is less prevalent. As patient demand has increased, families and demographics changed, services expanded, care specialization fragmented, and appointment times shrunken, the very notion of the family doctor has retreated. Whilst there is much to celebrate in the development of primary care in the UK, the reduced capacity, and indeed willingness to listen, has left a gap.
Dhairyawan argues that this gap extends across the National Health Service (NHS). A root cause, she suggests, is a power imbalance between clinician and patient. This is sometimes the result of prejudice flowing from racism, sexism, ageism and other forms of bias. Nowhere is this clearer than in maternity care. MBRRACE-UK (Mothers and Babies: Reducing Risk through Audit and Confidential Enquiries) reports have detailed ‘shocking racial and socioeconomic inequalities’ in deaths of women pre-, during, and post-childbirth in the UK and Ireland. Following a raft of recent reports criticising failures to listen and act on women’s concerns, it remains clear that ‘The NHS is still not listening hard enough to families on maternity care’.
Dhairyawan does not duck the difficult question of what needs to be done. Action starts with medical education, where students should be taught the value of listening to patients and equipped with the necessary skills. This would help counteract the biomedical model, which separates the patient from their social context and focuses exclusively on fixing the broken body. Students also need to be better equipped to deal with uncertainty: to acknowledge and share uncertainties rather than gloss over them or omit them because they cannot provide comprehensive answers.
In practice, clinicians should be more reflective about their listening practices and make it a part of their continuing professional development. The patient’s voice, meanwhile, should be elevated and amplified. In health services, we must prioritize the space for private conversations. In primary care, for example, Dhairyawan recommends that patients should be free to choose to sacrifice swifter access to any doctor in preference for continuity with their chosen doctor, if that is their priority.
Dr Dhairyawan’s book and article are timely. Several policy reports have referred to the devastating impacts that can flow from a failure to listen to patients. This was evident in the recent Infected Blood Inquiry final report into the worst treatment disaster the NHS has seen. Tens of thousands of people were infected with HIV and hepatitis C when they received infected blood and blood products in the 1970s, 80s and 90s. In his final report, the Chair, Sir Brian Langstaff set out lessons for the future. One was that “communication means listening: it is more talking with than talking to.” He went on to say that “there can be no proper consent without adequate communication, in particular of the risks and alternatives, but also so that the care of the patient respects the patient’s ownership of their own body and life.”
Listening to patients should not be confused with simply doing what they say. Clinicians should not offer treatment that is not clinically indicated and in the patient’s interests. What it does mean, as Dhairyawan so eloquently expresses, is that the combination of the clinician’s clinical expertise and the patient’s expertise of their illness and body, will lead to better outcomes and patient satisfaction.
This balance between professional expertise and patient autonomy is reflected in case law on informed consent. In Montgomery v Lanarkshire Health Board [2015], the UK Supreme Court required medical professionals to provide information to patients on material risks and reasonable alternatives that empowers patients to make their own informed choices.
