Patients in MCS: Misdiagnosis is ethical issue
Patients in a minimally conscious state (MCS) demonstrate behaviors suggestive of consciousness episodically and intermittently, and because these behavioral signs are not reproducible, diagnostic errors can be quite high, says Joseph J. Fins, MD, MACP, the E. William Davis, Jr., MD, Professor of Medical Ethics and chief of the Division of Medical Ethics at Weill Cornell Medical College. Fins is director of medical ethics at New York-Presbyterian Hospital/Weill Cornell Medical Center in New York City.
“MCS patients are often disregarded and mistakenly diagnosed as vegetative because they look vegetative when they are not demonstrating these behaviors,” says Fins. “Some of the diagnostic error rates are quite staggering. There are cases of people who have been misdiagnosed and mischaracterized for decades.”
Of MCS patients with a traumatic brain injury (TBI) who were diagnosed as vegetative in nursing homes, 20% to 40% are, in fact, minimally conscious.1,2 “So the first major ethical problem is a proper diagnosis, to distinguish those who are conscious from those who are not,” says Fins. “I think we owe something more to a conscious entity than we owe to people who are permanently unconscious. That is an important distinction and a diagnostic imperative.”
MCS individuals may have a higher level of integrative cognitive function than they are able to manifest behaviorally. “And we have a moral obligation to identify these people,” says Fins.
Diagnosis could change
Patients who are vegetative can move into a minimally conscious state due to recovery of higher cortical function. “Most clinicians are still unaware of this, so it goes unrecognized and undiagnosed,” says Fins. According to prevailing guidelines, the persistent vegetative states become permanent three months after an anoxic brain injury and 12 months after a TBI, notes Fins. In the period before permanence sets in, patients who are vegetative often get transferred to nursing home facilities because they are not demonstrating any improvement, and at a later point in time, some of these patients become minimally conscious.
“A patient may be properly diagnosed as vegetative initially, but the diagnosis then changes to MCS and goes unrecognized,” says Fins. “It’s unlikely the nursing home director will challenge the diagnosis that came from the academic medical center, even as behaviors evolve.”
The “minimally conscious state” category came into the literature formally in 2002. “Before that, we didn’t have a category for this patient population, but, of course, it did exist biologically,” says Fins. Fins’ upcoming book, Rights Come to Mind: Brain Injury, Ethics and the Struggle for Consciousness (Cambridge Press) tells the story of some 40 patients seen at Cornell Medical Center for multimodal assessment of their disorder, and family de-briefings about their challenge to find care for their loved ones.
A related ethical issue involves the diagnostic and therapeutic imperative, as more is learned about how patients recover and how to maximize any residual cognitive capability, says Fins. A number of studies have shown that certain drugs can either accelerate recovery or can actually improve a patient’s level of consciousness.3-5
Patients are also subject to reimbursement strategies that do not adequately cover their needs. “We have a kind of somatic-based reimbursement structure. The patient’s brain may recover long before their body manifests that they are getting better, and we are paid based on those manifestations,” says Fins. “These people are subject to the malignant bureaucratic machinations of what is called medical necessity — if you don’t demonstrate behavior, then we’re not going to pay for it. That is something that needs to be changed.”6
Range of recovery
The right to die movement got started in the context of severe brain injury, but some misconceptions exist due to it being over-generalized to a patient population who may actually improve.7 “Not all brain injuries are invariably catastrophic,” Fins underscores.
It’s important to realize that there is a continuing range of recovery that can occur, from being vegetative all the way to full recovery, says Fins. “We would rather look for the happy ending than the more complex, intermediate ending, because it absolves us of our guilt,” he explains. “Though nobody would choose to be in this brain state, there are people for whom heroic measures did bring a great curative result. We have to distinguish between what we would hope prospectively and what we have to do for the patient population that currently exists.”
The level of scientific excitement that currently exists is “totally unmatched” by the level of care that the average American receives if he or she has severe brain injury, however, says Fins. “What happens in chronic care is really a national tragedy. It is something we really need to do a lot more about, both for the civilian and the military population,” he argues. “It should be a golden opportunity to improve quality care, but it still hasn’t been a priority.”
Patients in chronic brain states can, in fact, get better over time, and there may be ways to facilitate those recoveries, but this area of research is “woefully underfunded,” according to Fins. “That is where the action should be, but it’s hard work, and there is a low number of programs that work in this area,” he says.
1. Andrews A, Murphy L, Munday R, et al. Misdiagnosis of the vegetative state: Retrospective study in a rehabilitation unit. BMJ 1996;313:13.
2. Schnakers C, Vanhaudenhuyse A, Giacino J, et al. Diagnostic accuracy of the vegetative and minimally conscious state: Clinical consensus versus standardized neurobehavioral assessment. BMC Neurol 2009;21(9):35.
3. Fins JJ. Brain injury: The vegetative and minimally conscious states. In: Crowley M, ed. From Birth to Death and Bench to Clinic: The Hastings Center Bioethics Briefing Book for Journalists, Policymakers, and Campaigns. Garrison, NY: The Hastings Center; 2008:15-20.
4. Shiff ND, Giacino JT, Kalmar K, et al. Behavioural improvements with thalamic stimulation after severe traumatic brain injury. Nature 2007;448:600-603.
5. Giacino JT, Whyte J, Bagiella E, et al. Placebo-controlled trial of amantadine for severe traumatic brain injury. N Engl J Med 2012;366(9):819-826.
6. Fins JJ. Wait, wait ... Don’t tell me: Tuning in the injured brain. Arch Neurol 2012;69(2):158-160.
7. Fins JJ. Constructing an ethical stereotaxy for severe brain injury: Balancing risks, benefits and access. Nat Rev Neurosci 2003;4(4):323-327.
• Joseph J. Fins, MD, MACP, Chief, Division of Medical Ethics, Weill Cornell Medical College and Director of Medical Ethics/Attending Physician, New York-Presbyterian Hospital/Weill Cornell Medical Center, New York, NY. Phone: (212) 746-4246. E-mail: email@example.com.