Bioethics Forum Essay
Lincoln’s Promise: Congress, Veterans, and Traumatic Brain Injury
Perhaps we were naïve. Our plan was relatively simple: we would chart the legislative evolution of programs for veterans with traumatic brain injuries (TBI) to identify policy gaps for this underserved and vulnerable population. With recent media attention highlighting the U.S. Department of Veteran Affairs (VA) shortfalls for TBI – the “signature injury” of the wars in Iraq and Afghanistan – we hoped to learn whether barriers to care stemmed from a lack of congressional will or operational problems at the VA.
It was a complex question, and we began slowly and deliberately. We identified relevant legislation directed to the care of veterans with TBI since the first wounded warriors returned home over a decade ago and highlighted any mention of congressionally mandated reports starting in 2005.
We hoped these reports, required by law and written into statute, would help us assess the impact of programs enabled by congressional legislation. As these documents were intended to influence legislative efforts and inform the broader debate about veteran care, we assumed they would be public documents, readily available to policy makers and academics alike, including our group at the Yale Law School.
But we were wrong. The concerted efforts of a small legion of law students and professional legal librarians have yielded little information. Despite entreaties to congressional offices, staffers at the VA, and the Library of Congress we are still searching for the vast majority of reports we identified as relevant to our work.
We even took the rather extreme step of filing a Freedom of Information Act (FOIA) request with the Department of Veterans Affairs in an attempt to acquire documents that we thought were central to our national conversation about veteran care. This endeavor was also unproductive.
TBI and VA: A Growing Need
Evidence suggests that over 300,000 service members have sustained a TBI since 2000, with over 25,000 cases occurring in 2014 alone. These numbers may underestimate the problem. The full number of veterans with TBI is unknown, given that many injuries are not properly identified and go undetected because there are often no outward signs of physical injury. Symptoms can be truly protean, generating physical, cognitive, and behavioral impairments. Even mild TBI, with subtle clinical findings can have long term consequences for a veteran’s functional status and emotional well-being. Many veterans with severe TBI require long-term care, and most would benefit from a sustained course of rehabilitation.
It is not all bad news. The growing number of veterans with TBI is a product of our own success and improved survival on the battlefield. Advances in protective gear, quick medevac to tertiary care hospitals, and advanced surgical techniques that relieve elevated intracranial pressure have reduced mortality rates. The greater likelihood of survival is reflected in higher TBI prevalence rates in evacuation hospitals. For example, the prevalence of TBI patients from the conflicts in Iraq and Afghanistan is estimated to be 22 percent, compared to 12 percent during the Vietnam era.
With more veterans returning from battle with TBI, the VA was simply unprepared, and frankly underfunded due to global pressures on the federal budget. This, coupled with a strategic failure to anticipate a long and prolonged siege in the “war on terror,” overwhelmed the VA health system. Many veterans have experienced lengthy wait times and spotty care, even though some VA facilities (like the one in Tampa) have a world-class program in the treatment and rehabilitation of severe brain injury.
These barriers mobilized veterans and their families to seek congressional redress to improve access to timely medical care and rehabilitation, and spawned a series of legislative initiatives to ease the burden of brain injury among veterans. Over the past decade, these legislative efforts, and many others, have sought to build up the VA infrastructure to accommodate a greater volume of patients, and to expand rehabilitative and counseling services for both the physical and psychological stigmata of TBI. And more recently, there has been programmatic support to help with the readjustment needs of former service members, in particular their community reintegration and support for the long-term care needs of those with the most grievous injuries.
The burden associated with family caregivers has also emerged as an area of congressional interest, in large part driven by those who have had intimate proximity to the daily grind of caring for those who can no longer care for themselves. The recognition of caregiver needs, and that some veterans will need assisted living, represents a radical departure from earlier legislative efforts at the start of the war when statutes explicitly excluded such entitlements like long-term care.
In Search of Accountability
How veterans’ needs were to be met and whether progress has been made was what our group at the Yale Law School wanted to discover by seeking to identify, obtain, and analyze the reports mandated by these statutes. We hoped to see how legislative efforts were informed by a growing experience of caring for veterans with TBI in order to better apprehend what remained to be done. But without access to these reports, there was no way to know whether we were throwing good money after bad, or if policy-makers in the VA were learning from their experience as they planned for the care of wounded veterans over the coming half-century.
Given our goals, we identified the Veterans Access, Choice, and Accountability Act of 2014 (Choice Act) as the most important TBI legislation of the past decade. Written to respond to scandals related to long wait times for veterans needing care, the $15 billion Act was intended to increase transparency. Section 206 of the Act, entitled “Improved Transparency Concerning Health Care Provided by Department of Veterans Affairs,” contains a provision for a public database to include information on patient safety, quality of care, and outcome measures.
The vast majority of the corresponding reports, however, have been impossible to locate. After failed attempts to track down the reports inside the walls of the Yale Law School, we decided to reach out to other sources. One of the law students had previous experience with the VA and went directly to a former VA researcher, who was unable to locate the reports. We also sought the assistance of the office of Senator Richard Blumenthal of Connecticut, who is the ranking member on the Committee on Veterans Affairs, as well as the offices of Senators Jack Reed and Sheldon Whitehouse of Rhode Island, but were told that the reports were not available to the public. Senate staff instructed us to contact the Senate Committee on Veterans Affairs, but a committee staffer told us that the Committee, upon the advice of its general counsel, was unable to provide us the reports we sought.
Outreach to the other body of Congress fared no better. We sent a request to the House Committee on Veterans Affairs, though there is no direct person to contact and no timetable provided as to when we should expect a response. We contacted the VA directly through their online forum, without success. We turned to the Library of Congress, which directed us to the Law Library of Congress, but this only yielded a generic response pointing us in several different directions that could result in access, many of which we had already tried without success. Part of the response we received from library staff was all too obvious: the reports we had spent months searching for were “often difficult to locate.” Our experience with the public-facing VA website is especially perplexing because it contrasts starkly with our interactions with the Department of Defense (DoD) website. Finding similar DoD reports using its online database was a straightforward process, taking little time or effort.
Our FOIA request to the Department of Veterans Affairs proved fruitless. The VA stated, “After conducting a reasonable search, we have concluded that the Veterans Health Administration does not have records responsive to your request.” The VA FOIA officer describes the process: “Record search inquiries were made to the appropriate offices. All offices provided a ‘no records’ response for records responsive to your request.” They did note that reports might fall under the purview of the DoD, though the one report we requested referencing the DoD was a report to be generated jointly by the VA and DoD.
Curiously, although we made 22 distinct requests in our FOIA letter, the VA’s response only provided information about four reports. Cast as “the initial agency decision,” the FOIA response led us to believe that we could expect additional information, but the response neither stipulated what was outstanding nor specified what additional information might be forthcoming. It suggested we might follow up with other agencies and other institutions. This was reminiscent of our group’s earlier efforts to find these items from other government actors, but it was more troubling this time because we were looking for reports requested by Congress from the VA and because these reports pertain to those to whom the VA is supposed to serve.
Transparency, Governance, and Veterans Care
After considerable effort, our far from inexperienced team still does not know why the reports cannot be located. Has Congress failed to conduct proper oversight of this agency of the executive branch? Is the VA failing to complete reports because those reports would reflect poorly on its efforts? Perhaps staffers are afraid to write these reports for fear that they could be perceived as disloyal, as whistleblowers susceptible to reprisal? Could it be that unfavorable reports, once completed, are quickly tossed aside? Or, is there a more innocent bureaucratic reason that the reports are unavailable? Are the reports an unfunded mandate, stipulated but not paid for and thus left undone?
To determine what the government has done for veterans should not require a team of legal research experts. The public must be empowered to hold the government accountable for fulfilling the promises often made to those who sacrificed for the country. To be sure, a voluntary military will only become more and more difficult to maintain if the public is unable to identify what resources are provided in return for its service. Moreover, representative governance depends on democratic accountability, which in turn requires publicly accessible data to ensure informed decision-making. The impact of unfilled promises for delivering needed health care for veterans not only affects the veterans, but also affects the family and friends often left to act as untrained caregivers. The broad impact of these government actions or inactions demands a transparent process to determine what steps have been taken to ensure quality health care so that an informed constituency may respond accordingly.
Democratic accountability becomes increasingly difficult, if not impossible, to achieve if there are barriers to access relevant information. Reports mandated by public laws should be publically available. Much is at stake here, not least, the credibility of the legislative process and our collective faith in government agencies entrusted to provide critical services to the citizenry. Public trust is deeply eroded when public documents are inaccessible, unavailable, or undone. Our experience gives a wary electorate reason to be even more suspicious of government.
It Started with a Promise
As stated in the Choice Act, the VA was created to fulfill President Lincoln’s promise “to care for him who shall have borne the battle,” through the goal of providing timely and high quality health care for veterans. Given the sacrifices that veterans have made for the country, there is an ethical imperative, under notions of reciprocity, that they receive services that provide the best opportunity for them to be maximally integrated back into society. Ensuring access to even adequate care for the injuries sustained in battle is part of a social contract.
Now in particular, with the campaign season underway, an informed electorate should have access to what it seeks to know. If we genuinely care about TBI and veterans, it is imperative that the public be able to determine what steps have been taken by the VA and Congress to meet veterans’ needs. Completing and providing access to public reports, funded by taxpayer dollars, should be the bare minimum for responsive and responsible government.
A citizen should not need a law degree, or the luxury of time, to be adequately informed about important issues. This is particularly true for veterans and their families who have earned the right to know how the government is responding to veterans’ needs. If our experience is representative, the health of our deliberative democracy is concussed, and in need of healing.
Michael R. Ulrich, J.D., M.P.H., is a research scholar, senior fellow in health law, and a lecturer in law at the Solomon Center for Health Law & Policy at Yale Law School. Megan S. Wright, Ph.D., J.D., is a 2016 graduate of Yale Law School. Kyle Edwards, DPhil, Nathan Guevremont, and Joel Ramirez are 2018 J.D. candidates at Yale Law School. Nina Varsava is a 2018 J.D. candidate at Yale Law School and a Ph.D. candidate at Stanford University. Joseph J. Fins, M.D., M.A.C.P., is The E. William Davis, Jr. M.D. Professor of Medical Ethics, Professor of Medicine at Weill Cornell Medical College, codirector of the Consortium for the Advanced Study of Brain Injury (CASBI) at Weill Cornell and Rockefeller University, and Solomon Center Distinguished Scholar in Medicine, Bioethics and the Law at Yale Law School, and author of Rights Come to Mind: Brain Injury, Ethics and the Struggle for Consciousness (Cambridge University Press, 2015).