Imagine that you are fully conscious, but your family, friends and healthcare workers all believe you are vegetative. You hear people discussing euthanasia, cessation of medical treatment, or moving you to a long-term care facility, none of which are able to monitor for signs of recovery. Illness is intrinsically terrifying, but nothing terrifies more than to be fully aware while those you love and those who decide your medical fate regard you as nothing more than an insentient collection of water, calcium and organic molecules.
Fifteen years ago, it was discovered that more than 40 percent of patients diagnosed as “vegetative” — since renamed unresponsive wakefulness syndrome — are actually capable of consciousness. They were misdiagnosed.
This year, results of a multisite study revealed that 25 percent (60 of 241) of patients who fail to exhibit behavioral indications of consciousness are able to understand and respond to instructions, such as “wiggle your toes,” in a way detectable by brain imaging. It does not matter that the toes cannot move, what matters is the patient’s ability to imagine them moving, because the imagining can be captured by a brain scan. This study was carried out at large, well-funded, well-equipped research hospitals, so we can plausibly infer that the number of patients who are covertly conscious is higher than 25 percent.
Despite ever more research indicating that large numbers of comatose or vegetative patients have been misdiagnosed, most diagnoses continue to be based on scant observations of behavior and dated brain-imaging techniques.
What is true for diagnosis is equally true for prognosis and therapy. Even if the diagnosis is accurate, this leaves open the question as to whether there is any hope for recovery. Some patients emerge from vegetative state years, even decades, after the diagnosis. However, routinely patients are moved out of the hospital and shunted off to a nursing home in less than 30 days. For the bean counters, the sooner these patients leave the hospital, the better. However, accurate prognoses cannot be rendered within one month and patient neurological status invariably deteriorates in nursing homes.
What makes these facts especially tragic is that newer prognostic methods, some as simple and inexpensive as sniff reactions to foul odors, have recently been described.
The status of therapies is no better. Lack of a widely effective therapy combined with the desperation of family members creates opportunities for ill-advised use of expensive, clinically unproven methods. When these methods are not covered by National Health Insurance, families confront a heartbreaking plight: pay for a therapy that is statistically as likely to be harmful as salubrious or do nothing. The need to justify prolonging a hospital stay often compels family members to choose the former.
A dozen years ago I created a graduate institute at Taipei Medical University and a research center at Shuang Ho Hospital, both dedicated to the investigation of the brain and consciousness. The motivation for both, especially the Brain and Consciousness Research Center, was to provide infrastructure for a nationwide clinical trial on vegetative state. Creating the institute and the center required nonstop grant writing, expensive equipment purchases, creation of a patient recruitment network, coordination among seven departments within the hospital and fundraising.
As the founder-director, failures are my responsibility. However, we did make some progress due to the selfless contributions of numerous scientists and clinicians.
On July 14 last year, without any prior consultation, the superintendent of Shuang Ho Hospital, a public institution managed by Taipei Medical University, abruptly announced the closure of the Brain and Consciousness Research Center. Ironically, in June last year the Ministry of Education (MOE) announced the award of a grant to Taipei Medical University specifically for brain and consciousness translational research, a grant secured, in part, because of the vegetative state clinical trial. After securing the MOE grant, the center that was actually doing brain and consciousness translational research was closed. Hence, the clinical trial was terminated. When the center was closed, the account for donations earmarked specifically for use by the center, an account duly registered with the Ministry of Health and Welfare (MOHW), contained more than US$750,000.
Moving forward, what is needed is a medical center that, as a primary mission, takes seriously the investigation of ways to improve diagnosis, prognosis and therapy for comatose and vegetative patients. This requires close integration among neurology, neurosurgery, radiology, nuclear medicine, rehabilitation, ENT, long-term care facilities and basic scientists skilled in multimodal brain imaging and modulation.
I have apprised former president Tsai Ing-wen (蔡英文), President William Lai (賴清德), members of their Cabinets and members of the legislature of this need. Lai instructed his team to consider my proposal, but on Wednesday last week the MOHW formally replied that they are disinclined to take any action. For the sake of these patients and their families, I implore Lai to reverse the MOHW’s decision and resolve to act on this proposal, boldly and quickly.
No individual clinician or scientist can keep pace with the accelerating growth in knowledge that pertains to vegetative state. Proper understanding, assessment and treatment requires coordination among many areas of specialization, hence the need for a medical center that takes this as its mission.
Resources are limited. Decisions regarding distribution of resources are difficult. However, Taiwan is well positioned to act on this problem without incurring excessive costs. First, there is no need to begin from scratch. The now defunct Brain and Consciousness Research Center created an infrastructure and collected complete datasets on more than 80 patients. Second and equally important, mistakes in the original design and implementation can be instructive for the to-be-designated successor.
Third, Taiwan’s national healthcare provides a platform that makes nationwide implementation of this project feasible.
Fourth, although there is a tendency to prioritize work on dementia, many of the cognitive functions that are affected in dementia are intrinsically related to consciousness. To better understand consciousness is to better understand dementia.
Twelve years ago, when I began this journey, ignorance was the accepted norm. It is no longer acceptable. No single scientist or clinician is blameworthy, because proper care requires an integrated and coordinated approach. Regrettably, that is still lacking. I owe it as a human being to advocate on behalf of a Keelung teenager locked inside her body, as well as the thousands of others in our island nation who share her tragic condition, and the hundreds of thousands on this globe who have met the same fate. Again, I implore Lai to reverse the MOHW’s decision. We have the capability and the knowledge, we only need to summon compassion and the will to act.
Timothy Lane is a researcher at Academia Sinica and an associate editor for the journal Consciousness and Cognition. He designed and implemented a nationwide clinical trial on vegetative state in Taiwan.
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