Access to Care for Persons With Brain Injury: Ethical Frameworks to Promote Health Systems Change

Abstract

The challenges of providing optimal healthcare for individuals with brain injuries are heightened by the unique complexity of the injury itself. Survivors with long-term needs often encounter precarious situations where they struggle to receive services in health systems focused on cost containment driven by medical necessity and managed care. This article draws inductively from the rehabilitation experiences of 2 survivors to highlight neuroethical considerations representing the person, the rehabilitation system, and the medical model. Drawing upon our experience studying the provision of care in the Commonwealth of Virginia, we seek to explicate the challenge of providing longitudinal services. Three diverse and intersecting ethical considerations are applied: (1) teleological implications within rehabilitation medicine; (2) a care ethics framework, nested in the scholarship of feminist and disability ethics; and (3) the literature on pragmatism and dehumanization. This article uses these frameworks to explore the challenge posed by current healthcare practices and the needs of individuals with chronic brain injury.

Value and Cost Savings From Access to Multi-disciplinary Rehabilitation Services After Severe Acquired Brain Injury

“…The models presented here are informed by work on ethical frameworks to promote health systems change related to access to care for persons with brain injury ( 21 ) and on the concept of value in the healthcare system ( 17 ). The multi-disciplinary lens' of ethicists, researchers and clinicians in the field of health service research hold promise for evidence-based action that will improve health and save money.…”

“…Insurance companies have short-term value propositions and are less likely to provide access when health and cost-savings benefits have a long-time horizon and accrue to others. Under the market model, access to rehabilitation services is interrupted or limited and delivered by a fragmented system whose actors have different goals (e.g., free up beds) and little incentive to coordinate across levels ( 19 – 21 ). An example of the market model is the U.S., where different payer systems, including Medicare, Medicaid, Employer-Sponsored Insurance, worker compensation and other options are available—or not available—on a state-by-state basis, and payers play a dominant role in determining access to multi-disciplinary rehabilitation after sABI.…”

“…It places a high value on prevention and providing a range of effective services to support independence for individuals. Value in access to multi-disciplinary rehabilitation is determined through shared decision-making by patients, families, and clinicians ( 17 , 21 ). The societal model relies on a seamless healthcare system from acute care to post-acute rehabilitation to community-based care and coordination with social supports such as vocational training, transportation, and respite care.…”

Neuroethics across the Disorders of Consciousness Care Continuum

“…Access to or provision of specialized, multidisciplinary neurorehabilitative care may be thwarted by misplaced presumptions of futility. 208 Families might also be discouraged from seeking out aggressive care if patients develop a life-limiting condition, such as sepsis or pneumonia. In contrast, a misdiagnosis that overestimates a patient's level of consciousness and ability to benefit from rehabilitation could lead to false hope and potentially wasted medical resources.…”

Looking Ahead: Traumatic Brain Injury, Ethics, and Discharge Planning

“…Meixner and O'Donoghue note that “Survivors now persist in a precarious situation where they struggle to receive needed services in a healthcare system focused on cost containment driven by medical necessity and managed care.”13 (p72) These are social justice and equity issues that need serious attention and while bedside decisions about discharge from inpatient rehabilitation are being made, the larger structural and access issues are even more critical for persons who often need help advocating for themselves and navigating complex systems.…”