The Road to Carceral Care

To put it somewhat too reductively, there are two paths into carceral care. First, a request or need for healthcare or social support leads to carceral exposure. This is the road to care experienced by the patient quoted above. She needed reproductive healthcare but was aware that seeking care could lead to criminal charges. The second path is different and far more difficult to address. Through this path, individuals first find themselves in carceral systems because of alleged neglect, abuse, or criminal acts. They then enter a set of systems that have become the default location for care. This reality is perhaps most deeply explored in the book Jailcare, where Sufrin describes the ways in which, for a particular deeply marginalized group of women in San Francisco, the local jail was the sole site for accessing healthcare.Reference Sufrin⁹ On this path too, care is deeply corrupted by its location inside carceral settings. This essay, however, focuses exclusively on the first path — the legal, structural, and practice mechanisms that facilitate the travel of healthcare information from clinical to carceral systems — and the consequences to quality of care inherent in that path.

Leaky Faucets and Legal Magnets

A variety of legal and structural mechanisms lay down pathways by which information obtained in a medical setting can be pulled into carceral settings. While the Health Insurance Portability and Accountability Act (HIPAA) protects information disclosed to or obtained by healthcare providers in a medical setting, when carceral actors seek medical information, HIPAA is more like a leaky faucet than a secure barrier.¹⁰

HIPAA contains significant exceptions to patient consent for medical information disclosure that facilitate criminalization of medical care. First, HIPAA allows disclosure “as required by law.”¹¹ Given the increase in state laws criminalizing pregnancy, absent additional state protections, this exception opens the door to any state law requiring the reporting of individually identifiable medical information. HIPAA also contains exceptions allowing for disclosure for “law enforcement purposes,”¹² for “judicial and administrative proceedings,”¹³ “to a public health or other appropriate government authority authorized by law to receive reports of child abuse or neglect,”¹⁴ and, in certain circumstances, to report information concerning “crime victims.”¹⁵ In short, when it comes to criminalization, HIPAA does very little to protect disclosure of information obtained healthcare settings.

HIPAA’s leaky faucet is compounded by a variety state and federal laws that function like magnets, pulling healthcare related information out of medical and into carceral systems. Central among those are state mandatory report laws, which require healthcare providers to report suspected cases of child abuse or neglect. In the specific context of reproductive healthcare, substance use, and family regulation, the federal Child Abuse Prevention and Treatment Act (CAPTA) requires every state to have in place “policies and procedures … to address the needs of infants born with and identified as being affected by substance abuse [sic] … including a requirement that health care providers involved in the delivery or care of such infants notify the child protective services system of the occurrence of such condition in infants.”¹⁶ In addition, twenty-six states require healthcare providers to report when they treat infants who show evidence at birth of having been exposed to drugs, alcohol, or other controlled substances; twenty-three states include “prenatal exposure to controlled substances” in their legal definition of abuse or neglect,¹⁷ and three states authorize civil commitment of pregnant people to protect the fetus they are carrying.¹⁸ Adding all this to the post-Dobbs, anticipated increase in prosecution for pregnancy-related conduct that will rely upon information disclosed in a healthcare setting, the problem is enormous.

“Mandatory Reporting” and (other) Health Professional Misinformation

State agency response to suspected child abuse is, understandably, organized as urgent — with “emergency petition” hearings for temporary custody occurring within days of an initial report.¹⁹ But this regime of urgency, when applied to substance exposure in pregnancy and combined with leaky faucets, legal magnets, and the widespread and inappropriate use of urine drug tests, has imported wholesale the mechanisms of family regulation into the birthing and newborn setting.

Rates of separation vary but there are states where over 4% of infants are discharged into the custody of someone other than the birth parent.Reference Patrick²⁰ Health professionals are the largest source of reports to family surveillance agencies, increasing 400% over the past decade.²¹ There are marked racial inequities in drug testing, child welfare reports, and consequence. Rates of drug use do not differ by race; however, Black pregnant people are almost twice as likely to be drug testedReference Kunins²² and between 4 to 10 times more likely to be reported to child welfare than White pregnant people.Reference Chasnoff²³ Black and American Indian children are overrepresented in foster care at 2 to 11 times the rate of White children in the setting of parental substance use.Reference Kokaliari²⁴

The health professional practice of drug testing, with reflexive reporting to family surveillance, so called “test and report,” rests upon misinformation and an overstatement of “risk” related to in-utero substance exposure. The primary source of information that initiates a report is a positive drug test, even though CAPTA does not require drug testing and does require a demonstrable health impact beyond drug exposure.²⁵ Professional society recommendations are clear: a drug test is neither an appropriate assessment of addiction nor a means of assessing child safety.²⁶ Pregnant people who use drugs are not more likely to abuse or neglect their children,Reference Austin²⁷ and children are more likely to experience abuse or neglect in foster care than in the general population.Reference Benedict²⁸

Harms of Carceral Care

Carceral care is unsafe for patients and their families. Legitimate fear of being reported leads pregnant people who use drugs to avoid medical care and deploy strategic engagement when they must. Carceral care can lead patients to make choices based not on the standard of care but instead on the carceral consequences of the decision. For example, women likely choose to detox during pregnancy rather than follow the follow the standard of care and take maintenance medications because detoxification will avoid positive toxicology report that could lead to a report to family regulation authorities.²⁹

Carceral care also harms health professionals. Work environments that are misaligned with one’s values cause moral injury and contribute directly to the demise of empathy, provider burnout, staff attrition, and further discriminatory care.Reference Terplan³⁰ Carceral care is not only unsafe for patients, but it represents a perversion of all four pillars of medical ethics.

From Mandatory Report to Mandatory Support

To address the harms of carceral care, we must decriminalize healthcare by constructing legal and practice barriers between care provision and punishment. As those directly affected have framed it, we must replace mandatory report with mandatory support.³¹

As to legal solutions, both leaky faucets and legal magnets need to be addressed. HIPAA and other federal and state health privacy laws must be strengthened to limit state agency and law enforcement authority to obtain and use health care information against patients. As one of us suggested in a recent paper, Congress should reform HIPAA by importing and enacting provisions from The Confidentiality of Alcohol and Drug Abuse Patient records rule use of reproductive medical data in civil and criminal proceedings. Those regulations specify that designated records “may not be disclosed or used in any civil, criminal, administrative, or legislative proceedings conducted by any Federal, State, or local authority, against a patient,” absent a court hearing weighing “the public interest and the need for disclosure against the injury to the patient, to the physician-patient relationship, and to the treatment services” and a clear finding authorizing disclosure.³² Similar protections for reproductive medical data would go a long way to addressing the leaky faucets we have described. As to the magnets, we join those most directly impacted by the family regulation system and call for the repeal of CAPTA and mandatory report.Reference Albert³³ These legal reforms would place primary responsibility for care where it belongs — in healthcare and community settings.

But legal reform is only the beginning. One reason health and other professionals report to family surveillance is because they wish to connect a particular family to social services,Reference Fong³⁴ even though healthcare institutions are among the most resourced in a community, and child welfare agencies primarily provide surveillance and not direct services. Reliance on reporting and outsourcing care is unique to hospital-based birth, as hospitals do provide comprehensive social services for patients and their children in the context, for example, of cancer care.Reference Mutebi³⁵ Health systems can keep care in house for pregnant and parenting people who use drugs. The involvement of family policing in medical care reflects the extension of carcerality into health which reifies discrimination and compounds judgement that pregnant people who use drugs deserve only punishment.

In addition, social service agencies outside carceral systems can provide needed and non-carceral support. Early Head Start provides comprehensive child development and family support services to low-income pregnant people, infants, toddlers, and their families. Maternal, Infant, and Early Childhood Home Visiting programs support pregnant and parenting people, are HRSA funded, and are available in almost every jurisdiction in the US.³⁶ There are limited institutional connections between the birthing hospital and these programs and many providers are unaware of them. Consequentially, utilization is low, especially for people who use drugs.³⁷

Pregnant and parenting people who use drugs are caught at the intersection of racialized drug policies and gendered (and increasingly punitive) reproductive health policy. Health professional complicity with carceral care is increasing and unexamined. To make birth safe, we must realign medical practice with professional ethics, decriminalize healthcare, and undo a legalized system that punishes rather than protects pregnant people, their children, and their communities.