VI. COURAGE & HOPE

Brietta R. Clark, Hospital Flight from Minority Communities: How Our Existing Civil Rights Framework Fosters Racial Inequality in Healthcare, 9 DePaul Journal of Health Care Law 1023-1100 (2005) (270 Footnotes omitted).

I have spent most of this article showing how the hospital closure problem reveals serious defects in our current civil rights framework, which should trigger frustration and anger among scholars and advocates on behalf of the communities who have been failed by the *1089 promises of Title VI. As shown above, our current civil rights approach perpetuates the false separation between race and economics in defining the problem, reinforces a health care system that is incompatible with racial equality, and defers almost completely to government agencies that have vacillated between overt sabotage and shameful neglect of their civil rights duties. The hospital relocation problem leads not only to racial disparities in health care access; it also reveals the dehumanizing and stigmatizing effects that result from the failure of civil rights laws to prevent hospital flight from minority communities. This has created feelings of hopelessness and anger among minority communities who feel betrayed by the political, judicial, and health care systems. As legal advocates, I believe we have a duty to harness this anger and use it to empower communities to fight to redefine our notion of civil rights in health care. To that end, I want to spend this last part using lessons from the hospital relocation problem to argue for a more comprehensive and creative plan of action, and to explain why I have hope for the future, despite the significant systemic and ideological barriers that must be overcome.

One of the simplest and most poignant observations about the problems of King/Drew is by Assemblyman Mark Ridley-Thomas who concluded that the problems of King/Drew are “Most fundamentally [due to the lack] of resolve to address the issue creatively and forthrightly.”   And this is where courage comes into play. Once we define the problem honestly, this dictates the kinds of reforms necessary for real change. While there are currently examples of discrete groups working on creative ways to improve access for targeted populations, one of the biggest problems is the lack of a comprehensive approach that bridges the different communities and areas in need and that empowers communities to attack the root of the problem. Health and civil rights advocates have a critical role to play in reforming our current ideological and structural framework for civil rights in health care by forming bridges across populations (race, gender, orientation, class); facilitating creative private and public partnerships; utilizing traditional and nontraditional forms of advocacy; and challenging even the most entrenched principles of our judicial and political system that impede court willingness to check the government's abdication of authority. In this final part, I want to suggest some guiding principles in our ongoing attempts to do this.

*1090 1. Be Willing to Challenge the Fundamental Ideology Underlying Our Current Notions of Civil Rights in Health Care and the Enforcement Structure of Title VI

Legal scholars have tended to craft solutions to the problem of racial disparities by identifying defects in our existing legal structure and trying to fix them. For example, a number of scholars have noted the importance of collecting racial data in order to monitor and ensure compliance with regulations concerning disparate effects; however, it is not clear how much help this would be in the face of judicial and administrative hostility to these kinds of claims. Indeed, Wilmington shows that even when courts were committed to reviewing such claims, the evidence of disparate effects could still be easily overcome. Legal scholars recognize this barrier and have also argued that the legal standards applied to such challenges should be altered to better accomplish the goals set forth in the Title VI statute and regulations. Thus, standards should be used that value both long and short term harms identified by plaintiffs and should factor in the reality of economic discrimination that undermines defendants' claims that other hospitals can mitigate any disruptions in access. Moreover, courts should scrutinize the defendant's decision-making process and reasons for closure more closely and shift the burden to defendants to show that no less discriminatory alternative exists.   However, this proposal does not take into account the fundamental struggle courts face in defining what level of disparity constitutes a Title VI violation in a health care system that fosters and sanctions disparities created through economic discrimination. The same economic factors that plaintiffs want courts to consider in measuring the magnitude of the harm, are also relevant to the court's perception of the economic pressures that incentivize the challenged closures, which make hospitals sympathetic defendants. Courts view inner city hospitals as having to bear a disproportionate burden of caring for the indigent - the federal government increasingly shifting more of the burden to local governments and federal and local government shifting responsibility to the private sector. One gets the picture of a game of hot potato, with the poor being dumped from place to place, no one willing to claim responsibility for providing a system of continuous and consistent quality care for everyone. Until we can change this aspect of the system, other reforms will have limited effect.

*1091 To that end, we must be willing to challenge certain ideological barriers to a meaningful reform of our health care and civil rights enforcement structure. Creating a system of universal health care is the obvious place to start. However, we know from studies of other countries that have universal health care that this is not sufficient to ensure racial equality. Universal access cannot eliminate racial disparities given the broader socioeconomic disparities within the U.S. that affect minority health status   and the undisputed fact that some race disparities can be linked to race bias or other non-economic factors.   Without some mechanism for identifying and correcting racial disparities in access and outcomes, a universal health care system will also have limited effect. Thus, a mandatory race data collection system designed to measure disparities in health access and outcome should be part of any health system implemented.

2. Short Term Solutions & The Role of Legal Advocates in Demanding Real Tools for Change

We can not and should not wait for the more fundamental health financing and civil rights reforms above to occur, in order to fight existing health care disparities. In the short term, communities can use their political leverage to prevent hospital closures. Legal advocates play a critical role in organizing and empowering communities to use this power to publicly shame and hold local officials accountable for decisions that adversely affect their communities. This approach has had varying degrees of success in California. One successful example occurred in the fight to keep Rancho Los Amigos open, a rehabilitation hospital whose closure would have disproportionately harmed disabled, indigent, and minority patients.   Disability and health care advocates were able to secure an agreement by the County to keep it open for at least another three years. The outcome of King/Drew is still uncertain. There is clearly a lot of pressure on County officials to keep it open; however, this pressure was unable to prevent closure of its trauma center.

*1092 Legal advocates should also help communities use their power proactively to demand more comprehensive reforms at the local and federal levels that will help minimize existing pressures on hospitals in urban settings. Rather than wait until a hospital closure decision has been made to mobilize and fight, health care advocates and community leaders should work closely to identify potential trouble spots and to formulate plans for addressing the economic and quality of care concerns that often drive hospital closures.   Such plans could then be presented to local government officials as less discriminatory alternatives that must be considered, rather than relying on the hospitals or the local government body that would probably not have considered or been required to look for less discriminatory options.   Earlier intervention by community advocates can influence the distribution of public resources in ways that can relieve hospitals' financial stress before it becomes too great.

Moreover, advocates should use other legal tools, such as charitable trust, merger oversight, and state antidiscrimination laws to influence the pattern of hospital restructuring in minority communities. Successful models can be found in advocates' challenges to hospital mergers that have threatened reproductive health care. For example, in a few instances, community advocates, have used such laws to prevent mergers that would have resulted in the elimination of certain reproductive health services for women.   In some cases, advocates used litigation, but in others, communities found that local public officials were sympathetic to the community's concerns and willing to use their discretion under the law to prevent disruption to health care access. In some cases, community action has prevented the proposed hospital closure or restructuring; in others, the community has been able to use its political and legal leverage to ensure that at least a *1093 portion of the resources would be redirected to maintain access to necessary health care for the affected community. 

Finally, minority communities should use their power to insist that any state or federal proposal for reform of the system includes a race data collection system. Opportunities for demanding these tools exist at every level. For example, as the Centers for Medicare and Medicaid Services (CMS) continually enact changes to their fee for service and managed care programs, race data collection should be required. In California, the Department of Managed Health Care is responsible for oversight of managed care plans, which have become critical players in our health care delivery system. Health advocates should empower communities to demand that any program for monitoring health plan quality and compliance include a mechanism for race data collection to help identify racial disparities. Although the collection of this data may not be immediately valuable as a litigation tool under our current civil rights enforcement structure, it can be very valuable if there is an alternative structure, preferably a community-based organization, that can gather, analyze, and use the data in proactive ways to facilitate reforms and police providers at the community level.

3. Community Education & Empowerment: Building Trust Across Different Communities

Both the short and long term legal reforms identified above require minority communities to become powerful politically and legally, and to be able to use their leverage proactively. This may seem like an unrealistic expectation for communities that are historically economically underserved and politically vulnerable. It is possible, however, and there are successful models for underserved communities becoming more active and powerful in driving important reform. Legal advocates are critical in this process and can facilitate community empowerment in a number of ways.

In my opinion, the most critical ingredient for community empowerment is trust - trust between the advocates and community, between different groups within the community, and between the community and the government officials responsible for protecting their interests. Legal advocates have an important role to play in restoring the trust that has been lost. In order to do this we must first acknowledge the mistrust that has been created by the inherent flaws of *1094 our existing system. Communities need to be educated about why our legal structure is flawed and what that means for the kind of advocacy communities should use and the kind of reforms they should demand. For example, many people attribute the hospital closure problem to a conscious bias by the hospital or local decision maker, whether or not a bias, in fact, exists. Thus, they continue to frame the problem in terms of intentional discrimination, even though this obscures the bigger problems that lead to hospital and physician flight. Advocates need to educate underserved communities about the relationship between their race, ethnic, or community specific concerns and the broader problems of inadequate health care financing and facilities planning at the federal and local levels. We need to demonstrate that the very structure of our health care system is incompatible with racial equality and that an overhaul of our system is necessary to any reform and meaningful enforcement of civil rights protection.

Moreover, we have to help bridge different groups that have common interests and complementary perspectives to build a broader base and increase the political power and leverage of underserved communities in fighting for health care reform. Indeed, experience shows that plaintiffs have the greatest chance for success where such coalitions are formed. For example, in Simkins, the lawsuit was initiated by African-American physicians fighting on behalf of African-American patients who were excluded from white facilities and forced to incur dangerous delays at the few overburdened facilities willing to accept blacks. In California, increasingly provider-patients coalitions are being formed to assert their common interests in reforming the health care financing system. One successful example mentioned above was the fight to keep Rancho Los Amigos open. Another successful example occurred in California a few years ago. There was a ballot measure prohibiting the collection of race data that almost everyone agreed would impede the ability of the government to identify and remedy racial disparities in health care. A remarkably diverse coalition of different racial and ethnic groups, women's organizations, GLBT   organizations, as well as health care providers and patients advocates, all came together to successfully defeat the measure. 

In a less successful example, provider and patients' advocates came together to put an initiative on the ballot that would raise money *1095 through a new tax, a significant portion of which would be directed to hospitals and physicians who provide uncompensated emergency room care. A key argument for the measure was the relationship between physician and hospital flight and the uncompensated care disproportionately provided by these providers. Unfortunately, it did not succeed for a variety of reasons, including the failure to educate the community about how this measure would help ensure continued access.

Given the important link between universal care and fighting racial disparities, minority communities must reach out to other groups who would benefit from universal care as potential partners for reform. In some cases, the partnerships are obvious, as for example where closures will have a harsh impact on minorities and people with disabilities, these groups have partnered to fight such closures.   Certain disease specific measures, such as public health measures to fight HIV, also lead to atypical partnerships between the perceived mainstream black organizations and GLBT groups. However, these partnerships should not be atypical and should not only occur in response to a discrete public health or community access issue. We should build on the partnerships in broader and sustained ways to fight inequality in health care generally.

Increasingly, there are reports about how the middle class is also suffering the effects of our patchwork health care system, as employers continually reduce, or eliminate altogether, affordable employment based healthcare.   Moreover, seniors are increasingly unsatisfied with the changes in Medicare and fear what further changes to a managed care system will bring. Studies also show that even those with insurance suffer because of limits on insurance and problems with hospitals that pursue them into bankruptcy for extraordinary medical bills that they couldn't cover.   The time is ripe for tapping into the growing numbers of the middle class and seniors, minorities and non-minorities struggling through our health care maze as coalition partners in the fight for health care reform. 

*1096 Finally, despite the history of mistrust generated by both the federal and state government in minority communities, increasingly local governments and officials are becoming more responsive to communities' needs. They evidence a willingness to experiment or partner with communities to prevent disruption in access to health care. Oregon's experiment with universal healthcare on a local level is one example. As already noted above, attorneys general in several states have used their discretion and authority to prevent hospital mergers or consolidations that would deprive communities of needed reproductive health services.   Other states have considered atypical partnerships to solve problems of health care shortages in the short term. For example, in California initiatives have been considered to facilitate the recruitment of physicians from other countries who are willing to work in underserved areas.   Another recent example is the opportunity for American medical students to be trained essentially for free in Cuba on the condition that the physicians agree to work in underserved communities in the U.S., an opportunity that met much resistance from the Bush Administration.   These can clearly be seen as unpopular partnerships for a variety of political reasons. While any proposals must be made after critically considering the access and quality of care implications, they should not simply be dismissed because of politics. We should not be thwarted from our long term goals for universal access with race-conscious tools for monitoring equality or our short term goals of increasing the number of health care providers in minority communities because of labeling or threats that such proposals are anti-American by government actors unwilling to provide adequate health care for all of its citizens.

*1097 4. Orient the Movement from Outside of the Current Political System: Grass Roots Advocacy & Community Based Organizations

The above examples highlight the importance of legal advocates working with health care advocates to design programs to minimize disparities or increase access in the short and long term. However, it is important that any meaningful proposal for change be initiated as a grass roots, community-based movement. In order to fundamentally restructure our existing system, change must come from people who can think creatively and radically about the best ways to create a race conscious, universal healthcare system, with meaningful legal protection to force government accountability. Leaders vulnerable to the kind of labeling and political pressures identified above are constrained in their vision and ability to honestly critique the current system. This results in the watering down of health care proposals for fear of isolating powerful constituencies.   Moreover, a movement for this kind of change should be institutionalized in order to decrease its vulnerability to the localization, politics, or resources of any given community. Finally, community based organizations should play a prominent role in gathering and analyzing racial data about disparities in access and quality of care. To the extent, such organizations can proactively use this data to monitor health care providers, they can become a critical resource for community policing of providers that are performing poorly, at least until some public authority demonstrates the willingness and ability to aggressively enforce antidiscrimination mandates.

When I began this article I believed that I could find hope for a meaningful change in our system. Within the last few days, however, a hurricane devastated the Gulf Coast and left an indelible mark on the nation. We have watched as the poorest people of New Orleans, *1098 predominantly black, were abandoned by our federal government for days before finally sending help, and even then, not enough. We learned that the federal government cut funding for repairs in the levees that could have prevented some of the damage. We heard that this very scenario had been predicted and that engineers knew and even called attention to the fact that there would be no way to evacuate the poorest people living in the most dangerous areas because they did not have private transportation. Still, the government did not ensure that public transportation would be available in case of evacuation. (The similarity to the initial decisions in Wilmington to remove hospital services without making any provision for people in the city to be able to get to the new suburban location is telling). In other words, the government abandoned these communities in important ways before the hurricane hit. We have also seen the government try to divert our attention to the “looting” of people desperately trying to survive, and away from the obvious and ignoble government failures that have cost lives. It is hard to be hopeful now.

Nonetheless, I am encouraged by the fact that for the first time in a long time I hear uniform public outrage about these government lapses - lapses which show an utter disregard for the welfare and safety of the poorest and predominantly minority communities ravaged by this hurricane. Most importantly, people are talking about the racist dimensions of this neglect in powerful ways. Our public discourse is now completely overtaken by this intersection of race and class, in ways that had been previously muted. The collective anger and determination to hold the government accountable are precisely what we need in order to create the chance for real change. This tragedy is a surreal and unimaginable lens through which to truly understand the insidiousness of our existing structure and the government's responsibility in fostering the inequality, mistrust, and dehumanization of our most vulnerable communities.

I want to be hopeful that despite the government's abdication of its responsibility for Title VI enforcement, we will not accept the idea that civil rights is indeed dead. Rather, we should harness our anger and energy, and use them to prepare for a long and worthwhile fight to redefine civil rights in an honest and meaningful way.   I am hopeful that communities of color will see that the connection between racial *1099 inequality and economics can be used to give us power to reach out to, and form coalitions with, other groups suffering under the collapse of our patchwork delivery system. I am hopeful that the resurgence of community action in response to hospital closures can be maintained and strengthened in forward looking plans to radically restructure our system. I am hopeful that providers and patients can be true partners in this fight, as their mutual interests in adequate coverage and in the importance of race data becomes clear. I am hopeful that as we acknowledge the trust that has been undermined through the government's and courts' decisions, we will regain the communities' trust and empower them to effect real change. I am hopeful that change will come with increased community education and power used to forge creative public-private partnerships, where possible, or by shaming and fighting to remove public officials who are not responsive to demands for reform.