Surrogates and family members making decisions and caring for patients with disorders of consciousness face a clinical culture of neglect. Many physicians misdiagnose patients as being in the permanent vegetative state, and fail to recognize that over half of patients who remain unconscious for a month will reach a minimally conscious state (MCS), emerge from the MCS or even fully recover. This diagnostic error, prompted by a static view of the brain, leads to premature discussions (often in the emergency room) of DNR orders, of withdrawing or withholding therapy, of pursuing palliative care or of donating organs.
Surrogates who do not pursue these end-of-life options must continuously advocate for care commensurate with their patients’ needs in both chronic and acute settings. Indeed, severe brain injury patients suffer from bedsores, painful contractions and diseases (MRSA, meningitis, pneumonia) and do not receive adequate physical, speech or other rehabilitative therapies. Administrative pressure to discharge these patients from acute to long-term, or “custodial,” care facilities compounds these barriers to quality care; this transition further segregates patients from rehabilitative services which promote recovery. After patients arrive in these chronic facilities or at home, surrogates themselves often experience painful isolation and lack recourse to social support services.
Despite the culture of neglect plaguing surrogates and patients with severe brain injury, the neuroscience of disorders of consciousness has shown great promise. Neuroimaging technologies, including fMRI, EEG, and PET scans, have the potential to improve diagnostic techniques, the existing nosology and to indicate a novel ethical framework for caring for patients with disorders of consciousness. The diagnostic discordance between what clinicians observe at the bedside and in the neuroimaging data, suggests that clinicians must do more for patients seemingly unconscious at the bedside, but not according to the scanner, while cautiously proceeding with technology which is not yet the standard of care.
Other experimental data suggests the possibility for evolving neuromodulation techniques to remedy chronic impairments of consciousness. A monumental study with deep brain stimulation (DBS) has already facilitated functional improvements, notably in communication, in an MCS patient. To continue such quality DBS research, it will be essential to overcome barriers related to device regulation, more specifically issues with intellectual property exchange and the FDA’s Humanitarian Device Exemption. When coupled with increasing access to rehabilitative medicine, such research will likely lead to an era of neuroprosthetic communication, in which severely brain injured patients can functionally communicate with others through a device or machine. This regained ability to communicate has ethical implications, as patients may now express preferences for treatment or end-of-life care and better articulate whether they are experiencing pain or suffering. Even once severely brain injured patients obtain this restored capability, clinicians must remain aware of the limitations of the technology to avoid misconstruing, and to ethically respond to, the expressed wishes of the patient.
In order to overcome the barriers to care and promote access to promising research, many revisions to existing public policies must take place. While the Veteran Administration has laudably created polytrauma centers which blend acute, chronic and rehabilitative care, similar to the mosaic outlined in the Mohonk Report, the broader American health care system has yet to adopt such programs. In order for patients with disorders of consciousness to benefit from novel advances in neuroscience, it is essential to restructure the existing payment schema for rehabilitation. Medical necessity, a reimbursement construct found in federal law, currently delineates the amount of rehabilitation, access to novel therapies or interventions, and places patients receive care; unfortunately, this reimbursement model is not responsive to the biological means by which brains recover and denies both patients and families the care needed to facilitate improvement.
Given the severe segregation of this group within the health care system, advocates ought to adopt a civil rights argument that recognizes these patients right to consciousness. The Affordable Care Act (ACA), given its focus on efficiency, will likely not support the interventions needed to uphold this right; indeed, the ACA added rehabilitation as an afterthought. To advance this civil rights movement, advocates should first define these patients as a class, worthy of civil protections and thus, falling within the purview of the Americans with Disabilities ACT (ADA). They should then discuss rehabilitation through the lens of educational reform, fostering the developing processes of recovery and treating rehabilitation centers as schools. By participating in such a movement, patients and surrogates may gain an adequate voice to combat their marginalized position in society. They may then be able to repeal problematic discharge or treatment decisions and guardianship laws which deny the patient’s right to consciousness, as well as advocate for interventions that restore functional communication and the patient’s subsequent integration in the community.