Preeminent social epidemiologist Rudolf Virchow said in 1848 that “physicians are the natural advocates of the poor, and the social problem falls to a large extent within their jurisdiction.”Reference McNeely 1 Today, although health care providers are just as likely to witness “social problems,” they lack the expertise, time, and resources to effectively address the injustices facing low-income populations.Reference Tobin-Tyler 2 Today, with reproductive freedoms eroding in the United States, law is an even more ubiquitous concern of providers, who are increasingly required to enforce state surveillance and sanctions. MLPB (formerly Medical Legal Partnership | Boston) is an interdisciplinary non-profit organization aiming to help care teams develop legal problem-solving capacity. MLPB is unique from many medical-legal partnerships (MLPs) in that it does not directly represent patients. Instead, MLPB embeds its attorneys into care teams as consultants who arm providers with the capacity to identify, prevent, and address harm from their patients’ legal issues. They also support the care team’s capacity to navigate the legal issues of delivering care to patients in empowering and rights-promoting ways. MLPB has partnered with the Lynn Community Health Center for three years in support of its Moms Do Care clinic serving mothers with opioid use disorder (OUD). This clinic is one of seven Moms Do Care Program sites currently funded by the Massachusetts Department of Public Health as full-spectrum recovery clinics but is the only one with an MLP.
Moms Do Care Program Model + MLPB
In this study, we used community-based participatory research methods to understand the experience of Moms Do Care teams across the state as they navigate the legal problems of both their patients and clinics. 3 We used the asymmetric “exposure” to MLP as a natural, observational case-control experiment, allowing us to compare the relative effect of a team-facing MLP across otherwise similar integrated reproductive care clinics.
Background
To be pregnant with an OUD in the United Sates is to exist in shadow. Laws and policy have fashioned OUD in pregnancy into a paradox unique amongst health conditions in the country: Perinatal OUD is the only condition where not only is the disorder criminalized, but so is its treatment.Reference Flavin and Paltrow 4 Massachusetts is one of 26 states that punishes pregnant people for accessing the standard of care for their OUD. Pregnant and post-partum people also face many socio-emotional barriers to seeking care for their OUD, including stigma and fear of legal consequences.Reference Work 5 Chief amongst these are fears of punitive treatment by family policing systems, such as the Massachusetts Department of Children and Families (DCF).Reference Goodman, Saunders and Wolff 6 Mandated reporters in Massachusetts, which include health care providers, are required to report pregnant people receiving medications for OUD to DCF for child abuse or neglect. Providers, therefore, are antithetically forced to report their patients for abuse because of the medication that they, themselves, prescribed. The consequences of being reported are far from trivial: Birthing people reported to DCF for exposing their fetus to an opioid have a nearly 50% chance of receiving DCF’s most severe determination 7 and risk having their baby taken from them—often mere minutes after delivery. For people with OUD, losing custody — either temporarily at birth or permanently at around six months postpartum — can be deadly. Child removal is associated with increased rates of substance use, trauma, and mortality,Reference Harp and Oser 8 especially from overdoses, which mothers with OUD without custody are 55% more likely to experience.Reference Thumath 9
The Massachusetts Bureau of Substance Addiction Services created the Moms Do Care Program in 2015 to respond to the opioid overdose crisis then unfolding in the state. The Moms Do Care Program funds clinics to provide an integrated interdisciplinary model of perinatal health care services for participating mothers with OUD to support them “after [their] baby is born and in the early phases of childhood.” 10 Program eligibility has included pregnant or parenting “women” 11 18 years or older with current or past history of OUD regardless of custody, insurance and citizenship status. 12 The majority of patients have experienced significant past trauma and enter the program with many social needs that impact recovery adherence and emotional wellbeing, such as unstable housing, lack of transportation, and unemployment. 13 Although the demographic characteristics of Moms Do Care patients resemble those of mothers with OUD statewide in most respects, 14 Black patients are underrepresented in the Moms Do Care Program (3%) 15 compared to statewide rates of perinatal OUD for Black mothers (4.5%)Reference Schiff 16, suggesting racialized barriers to access.
Each of the seven Moms Do Care teams serve roughly 30-50 patients per year. The care teams are typically comprised of physicians and advanced practitioners trained in addiction and obstetric medicine, nursing staff, behavioral health care providers, and community-sourced workforces such as Community Health Workers, and Peer Recovery Coach Moms (or, “Peer Moms”), who have experienced perinatal OUD and are now in long-term recovery.
Pregnant and parenting people with OUD experience complex and layered stigmaReference Goffman 17 from social service systems as well as from health systems. This complex stigma reflects an intersectional structural vulnerabilityReference Friedman 18 historically linked to eugenic and racialized maternal ‘unfitness.’Reference Goode and Ben-Yehuda 19 Practically, for pregnant people with OUD, this vulnerability becomes a clinical risk factor: it delays treatment-seeking, reduces compliance, and increases the risk of relapse.Reference Tsai 20 Punitive policies for people with substance use during pregnancy lead to 55% less treatmentReference Angelotta 21 and do not reduce the incidence of complications for the neonate.Reference Faherty 22 Pregnant and parenting people with OUD, therefore, are forced to be exceptionally shrewd navigators of health and social systems. They routinely face difficult choices between risking civil-legal peril from accessing so-called “safety-net” systems and, on the other hand, facing complicated health and social situations alone. Similarly, care team members must navigate complex law and policy obligations to satisfy the sometimes-divergent expectations of their patients, clinic, health system, and personal practice philosophy.
[Pregnant and parenting people with OUD] routinely face difficult choices between risking civil-legal peril from accessing so-called “safety net” systems and, on the other hand, facing complicated health and social situations alone.
Conceptual Framework
Our study utilizes a Reproductive Justice framework to approach Moms Do Care team members’ exposure to, and contextualization of, legal needs and problem-solving for their patients and their clinical practice. “Reproductive Justice” was coined in 1994 by the Black human rights group Women of African Descent for Reproductive Justice.Reference Ross 23 Combining reproductive rights and social justice, Reproductive Justice asserts “the human right to maintain personal bodily autonomy, have children, not have children, and parent the children we have in safe and sustainable communities.” 24 It is rooted in the lived experience of birthing people of color and considers the roles of power, privilege, racism, paternalism, ableism, and other forms of politically-constructed oppression in the distribution of both health and justice. Reproductive Justice, therefore, is a useful lens for critical inquiry to recognize complex and intersectional sociopolitical forces contributing to the experience of Moms Do Care patients and their providers as they variously comply with, avoid, and resist oppressive law and policy regimes.Reference Ziegler 25
Methods
We chose to use qualitative research methods for our project because Reproductive Justice is rooted in subjective lived experience. We used a phenomenological approach to qualitative data collection and analysis to compare common experiences of serving program participants, as well as the differences between the Lynn Community Health Center (the Case Site) and the Control Sites.Reference Shelton, Philbin and Ramanadhan 26 We ultimately chose a multiple qualitative method design that incorporated community-based participatory research methods in order to emphasize lived experience while minimizing risks of participation in the study to marginalized team members. 27
Sampling and Data Collection
Our sampling strategy was matrixed to ensure we would be able to develop a rich understanding of care team members’ perspectives to detect differences between relatively small groups across the Moms Do Care sites. This included a purposive sampling strategy for the Case Site, and a representative sampling strategy for Control Sites that prioritized distribution across sites. We engaged in field observation and used semi-structured interviews with care team members to explore the priorities and pain points they experienced related to legal needs and problem-solving strategies. All interviews utilized open-ended interview guides that minimized directiveness and were conducted over Zoom and audio-recorded with participant consent for the purposes of transcription.
Community-Based Participatory Research
Peer Moms were key informants for this study because they were able to represent both the experience of a care team member as well as the lived experience of a mother with OUD. Our study was co-led by a former Peer Mom (LG) and also convened Peer Moms as an Advisory Group to the study. We invited Peer Moms to engage as paid Advisors to our work and prioritized their agency and safety in our sessions: Peer Mom Advisors were given control of the sessions’ ground rules and access to the study’s supervisors, and co-developed and refined journey maps and survey questions alongside the authors.
Analysis Methodology
Phenomenological inquiry guided our analysis to focus on descriptions and statements that demonstrated the essence of team members’ lived experiences with legal needs through their Moms Do Care Programs. We analyzed jottings, notes, and transcripts from field observation and interviews and coded them thematically in NVIVO. Our coding applied themes both deductively (according to the Reproductive Justice frame) and inductively (e.g., “Trust,” “Agency,” and “Moral Injury”) as similarities and contrasts emerged across sources until key distinctions could be unified into coherent categories.
Results
We conducted interviews with 27 care team members between February and March 2022. Of these, 16 were affiliated with the Case Site, and 11 with Control Moms Do Care sites. One site was unresponsive to outreach. Six Peer Moms from four Moms Do Care sites participated in both Peer Mom Advisory Group meetings via Zoom in March 2022.
Study Participants by clinic role
Map of study participation by site and study designation
Analyzing data through a Reproductive Justice lens revealed substantive differences between the Case Site and the Control Sites. We inductively identified the key impacts of team-facing legal partnering in three themes: contextualizing law and policy systems, cultivating agency and action against structural injustice, and increasing resilience and stability in protective ways for providers and patients.
Contextualizing Law and Policy Systems
Across Case and Control Sites, care team members identified legal issues as some of the most time-consuming and harmful barriers to their work. All care teams described how legal needs manifested in their work as harming their patients, creating barriers to the therapeutic relationship between patient and provider, and causing harm to the team members, themselves. Care team members unequivocally describe removal by DCF to be the top legal concern of their clinic, but other legal needs related to patients’ housing and transportation also pose significant barriers; for instance, accessing government-issued identification, or the common frustration amongst sites of a “Catch-22” related to shelter access: In Massachusetts, eligibility for emergency assistance shelter requires custody of a child, but regaining custody of a child removed by DCF inevitably requires access to shelter. This kind of impossible civil-legal juxtaposition was described as routine for Moms Do Care patients.
Case Site care team members valued MLPB not only for case consultations but also for providing context for the intent and practical application of the laws and policies they and their patients faced. MLPB support helped care team members understand the non-legal pathways that can eventually lead to acute legal distress. In several case consultation meetings with MLPB, Case Site care team members engaged the MLPB consultant in discussions about the function of specific law and policy systems and how best to leverage their roles within those power dynamics:
[with MLPB,] you become very sensitized to all the structural limitations that people have in their lives… Having access to staff who can take the time and legal services that can enlighten about what advocacy opportunities there are could make it possible to not have some of those interactions feel futile and to actually see some change and some growth and some healing.
– Case Site care team member
Exposure to MLPB helped Case Site care team members understand laws and policies in productive ways. This helped team members change their interpretation of laws and policies, sometimes flipping their conception of them from onerous barriers into assets for recovery. For instance, the MLPB consultant instructed the Case Site care team as to how privacy laws regarding patients’ behavioral health care 28 conventionally regarded as onerous barriers to medical efficiency actually serve as important protections for the patient’s overall health. Otherwise, sensitive health data about a patient’s course of treatment and toxicology screenings could be taken out of context and weaponized against them, legally. Recontextualizing the care team’s conception of privacy laws helped the team protect patients from hostile surveillance that could otherwise impact the patient’s self-determination as well as their choice to continue to engage in a therapeutic relationship with the clinic. For many Case Site care team members, the MLPB consultant revealed an entirely different way of navigating their practice.
Control Sites, on the other hand, were more likely to recognize legal needs more narrowly, only as formal interactions with explicit agents of the legal system such as lawyers, police, and judges. Control Site care team members also described more uncertainty and self-doubt than Case Site care team members about what they were “allowed” to do with law and policy issues in their role. They were also more likely to express hopelessness in the face of the volume of complex legal needs patients experienced at the hands of what seemed to them to be officious treatment by DCF, courts, and safety net systems:
There’s actually one or two [DCF] staff members who have been around a very long time who hold the lock and key. And if you look at them the wrong way, then you’re on the naughty list for the rest of your life. And if you need that resource or service again, you might as well try to get a pardon from the President.
-Control Site care team member
Cultivating Agency and Action Against Structural Injustice
Providing equitable care was a prominent concern for most care team members across Case and Control Sites. Serving as a safe and welcoming refuge for their patients was a universal goal for care team members. They find troubling that the legal needs facing their patients outside their clinic create deeply inequitable harms. Care team members described these harms, variously, as sanctions, surveillance, stigma, and as less acute administrative burdens like delays, denials, and discouragement faced by their patients. They also carried guilt about their clinic’s role in perpetuating these harms, as in the case of their mandated reporting obligations:
I am the one that faces these mothers…It’s just terrible that we have to report [them to DCF]. I have to say in one breath to these moms ‘It is really important for you to stay on your medication… it’s best practice for you’… And then, in another breath I need to say, ‘and because you’re on this we need to file with the Department of Children and Families.’ It is ridiculous, and it is trauma-inducing.
-Case Site care team member
Care team members believed that legal problems contributed to racial and ethnic disparities both in under-presentation of minoritized people to the clinic as well as in their access to justice once enrolled. Many described how family separation, whether by Immigration and Customs Enforcement or DCF, especially discouraged undocumented immigrant mothers with OUD from engaging with their clinic. Consistent with data published by DCF, care team members frequently observed more severe custodial arrangements for Black and Hispanic patients. 29 Rationing scarce social care and advocacy resources to resolve legal needs for patients introduced another moral dilemma for care team members who feared distributing resources based on implicit bias:
I have to ask, like: ‘How did I cherry pick? Who were those two people that I decided I was going to take a half day out of my schedule where there was no time to do that?’ And really think hard about who we decide to go to bat for. And I don’t think that we do it equitably.
-Control Site care team member
By contrast, the equitable distribution of legal support inherent in MLPB’s team-wide approach was a preferable solution to ad hoc, referral-based “Social Determinants of Health” interventions that felt morally ambiguous to team members.
Case Site care team members were more consistently aware of, and engaged in, opportunities to advocate for their patients in both formal legal settings (e.g., with courts and the patient’s public defender) and, just as importantly, in extra-legal contexts (e.g., with shelter providers and intimate partners) to negotiate better outcomes. Many Case Site care team members described MLPB as a unique antidote to feeling “stuck:”
Having like a legal consult, …it’s something that [the care team members] can’t provide for each other; it’s a partner that can help solve a problem that they can’t solve. It’s that piece, the last piece of the puzzle that maybe makes all the difference in the world.
-Case Site care team member
Control Site interviewees, on the other hand, described much less certainty about being able to advocate or intervene effectively for their patients. They expressed discomfort and paralysis about how to support patients in their role. This frequently prevented them from taking actions that were actually within their power:
[We keep] feeling ill-equipped to know how [to advocate for our patients]. You know, we write a lot of letters, but that doesn’t feel sufficient … It’s not enough, and it feels like it takes an enormous amount of resources from our clinic, even to support them with those letters.
-Control Site care team member
Although Case and Control Site team members described facing the same types of legal issues, Control Site team members did not often recognize these needs as legally related nor as remediable. Instead, they interpreted legal problems more narrowly as needs that were immutable, or that would have to wait for the availability of direct representation or the development of clinic protocols to address the issue.
Increasing Resilience and Stability in Protective Ways for Care Team Members and Patients
Care team members from both Case and Control Sites agreed that laws and policies targeting OUD recovery often contribute to workforce burnout on their teams. Seemingly endless legal barriers combined with challenging work and too-low wages leave staff feeling cynicism and despair. Care team members from all sites describe how legal needs profoundly harm not only patients but team members, as well. Many care team members experience secondary trauma and hold themselves accountable for the harm that comes from legal needs:
It’s very hard work and very draining, especially when you have a bunch of very difficult cases in a row … Like, when we have a hard case or a baby that gets removed to the hospital it’s devastating to everyone … It’s been challenging for my team … I’m not sure how to get past the numbness that we’re seeing with our inpatient staff.
-Control Site care team member
Care team members’ obligation to report patients on medications for OUD, especially, was a source of great angst and moral injury. Participating in the coerciveness of these systems was particularly galling because care team members identified strongly with reproductive justice and recovery-oriented frameworks that prioritize freedom and choice. Automatic reporting on Participant Moms, therefore, is antithetical to their practice philosophy. The resulting feeling of co-option was a significant source of despair and exhaustion for all care team members.
Evaluating MLPs against their larger potential for liberation in this way allows us to look critically at systems of power and ask questions not simply about access to justice for the patient, but about the prevention of injustice by the systems acting on the patient.
Case Site care team members felt strongly that MLPB’s support helped their patients achieve better outcomes. They also reported that these positive impacts sustained them in doing their work amidst otherwise overwhelming adversity and frequent tragic outcomes for their patients and children. In contrast, Control Site care team members expressed greater frustration and potential for burnout related to legal needs:
I will be candid: It’s incredibly hard to get answers and to figure [out legal problems]. We are not legal experts by any means and we do the best that we can to support our women in navigating [legal needs]. But sometimes, as terrible as it sounds, we hit roadblocks. We have to put our hands up and say “Here are some options for you. You need to pursue this yourself because we can’t get any further.” — which doesn’t feel all that good, right? We want to see folks through to the finish line.
-Control Site care team member
This is not to say that MLPB was always able to provide a positive resolution to legal needs. However, Case Site care team members appreciated that the MLPB consultant unfailingly provided a productive way of sorting through the complexity. Even in situations where the MLPB consultant could only verify that all legal options were exhausted, Case Site care team members described how this validation was liberating. Rather than feeling defeated, affirmation from the consultant allowed them to move on to other, more productive ways of supporting the patient:
Having the legal counsel is just another partner that can help solve problems that don’t seem to be solvable. That’s a big part of sustainability: It adds another layer of hope … Sometimes that makes all the difference; knowing that there was just another angle, another tool to solve the problem.
-Case Site care team member
Case Site care team members also described a democratizing effect of MLPB that helped spread out the “burden” of social care from a few specific team members — almost always the community-sourced, lower-paid positions such as Peer Moms and Community Health Workers — which reduced the risk of exploitation and burnout of those team members.
Discussion
For the Moms Do Care program care teams, access to legal problem-solving supports through an MLP were transformative. MLPB helped the Case Site care team contextualize law and policy systems for both patients and colleagues in productive and equity-promoting ways, cultivated agency and action against structural injustices, and increased resilience and stability in ways that were protective for both the clinics and their patients in the face of intersectional structural vulnerability. Critical investigatory approaches such as community-based participatory research and Reproductive Justice can help us understand the potential of MLPs more widely: they are tools through which we can evaluate the harms of intersecting socio-political systems and through which we may evaluate corresponding health interventions. Evaluating MLPs against their larger potential for liberation in this way allows us to look critically at systems of power and ask questions not simply about access to justice for the patient, but about the prevention of injustice by the systems acting on the patient.
The opioid overdose crisis continues to rage in the US, accelerated by the Covid-19 pandemic’s toll on mental health and access to treatment. Pregnant people with OUD are, statistically, a small proportion of the total people suffering from opioid addiction. However, they represent a group with outsized vulnerability and a trans-generational health burden. As access to reproductive care continues to deteriorate in the US — whether through judicial, legislative, or political-economic means — the experience of the Moms Do Care integrated perinatal teams provides an instructive lesson for the potential future of reproductive care delivery — and reproductive justice-promoting interventions — under increasingly invasive and hostile surveillance.
Study Limitations
The absence of participation from an entire site (Whitter St. Health Center) introduced potential selection bias. With only one Case Site, this study was able to reflect only the experience of one team’s collaboration with MLPB. This means that the Case Site findings should be generalized with caution. Because this study also eschewed access to Moms Do Care patients out of safety concerns, this also represents a gap in understanding both the experience of legal needs, as well as the ultimate effectiveness of the MLP to its most important constituent: the patient. For this reason, we emphasized the perspectives of care team members with lived experience of OUD, Peer Moms. Finally, one of us (GJ) is a white male without the experience of a substance use disorder, and therefore occupies a distinctly ‘outsider’ position in relation to the impacted community for this study. Amidst the power dynamics inherent in the researchers’ relationship with the study and patients, this risked introducing outsider bias into the study. We used inclusive design, reflexive practice, and shared leadership approaches to proactively address this dynamic and reduce bias.
Conclusion
America’s access to justice gap is vast and growing.Reference Slosar 30 Protecting Americans’ access to their civil and reproductive rights through direct legal representation, alone, will become harder — if, indeed, it ever was possible. Serious inquiry into how to “close” the access to justice gap, therefore, must operate more expansively. Sufficiently increasing the supply of lawyers available to treat civil legal needs only after they require direct representation is practically impossible and, more importantly, already too late to be described as “justice.” Instead, democratizing and preventive approaches to rights and justice such as team-facing MLP hold great promise to expand capacity to remediate and even prevent injustice by empowering the care team as part of a larger “community of practice.”Reference Morton 31
After all, health care providers are trained to handle complexity. They regularly sort through the many intricate and curious problems of their patients that present as medical and behavioral ‘puzzle pieces.’ MLPs can help care teams appreciate the otherwise inscrutable contours and connections of the legal pieces of the puzzle as they try to complete the whole picture. If the American healthcare workforce shortage crisis is at least in part a result of demoralizationReference Reinhardt 32 resulting from puzzles with too many missing pieces, MLPs have the potential to be, to quote one Case Site team member, “the last piece of the puzzle that maybe makes all the difference in the world.”
Note
The authors have no conflicts to disclose.
Acknowledgements
The authors would like to acknowledge the Peer Recovery Coach Moms who contributed their time and significant expertise to this research.
