The Struggle for Consciousness

by Moheb Costandi

November 9, 2015

Joseph J. Fins [photo: the Society for Neuroscience]

In the past decade or so, advances in technologies such as functional magnetic resonance imaging (fMRI) and positron emission tomography (PET) have had a major impact on our understanding of disorders of consciousness, enabling doctors not only to diagnose patients’ conditions and better predict their potential progress, but also, at least in some cases, to communicate with less-than-fully-conscious patients.

These advances pose major ethical challenges for patients' families and caregivers, clinicians and insurers, including when to provide life-sustaining treatments and how to make end-of-life decisions [see The Ethics of Unconsciousness]. Dana Alliance member Joseph J.  Fins addressed these issues in the David Kopf Lecture on Neuroethics at the annual meeting of the Society for Neuroscience in Chicago last month. Fins is also on the board of directors of the International Neuroethics Society, and received a Dana Foundation imaging grant in 2005; his latest book is Rights Come to Mind: Brain Injury, Ethics, and the Struggle for Consciousness.

Fins began by describing the case of Maggie Worthen, who in 2006 suffered a severe brain stem stroke that extended up into the thalamus, just days after completing her final exams at Smith College in Northampton, Mass. Maggie's doctors diagnosed her as being in a persistent vegetative state, said that her condition was unlikely to improve, and suggested to end her life support.

The decision came down to Maggie's mother, Nancy, who was adamant that Maggie retained some consciousness. Eighteen months after her stroke, when Maggie was still considered to be in the persistent vegetative state, Nancy took her to Weill Cornell Medical School. Within days, Fins and his colleagues, using a neural prosthesis, established that Maggie was indeed still conscious, and could respond to their questions by moving her eyes.

“Those downward eye flicks don't look like much, but getting Maggie to that point was a Homeric odyssey that overcame social stigma and an indifferent healthcare system,” said Fins, “and drew upon some of the most exciting developments in systems neuroscience.”

Patient autonomy, including making their own decisions, plays a central role in modern medical ethics, Fins said, noting that the apparent loss of conscious awareness acts as a trigger, changing who makes those decisions in such cases. 

He argues that society neglects people with severe brain injuries. 

Four decades of change

The persistent vegetative state was first described in a 1972 paper by neurosurgeon Bryann Jennett and neurologist Fred Plum, who defined it as a condition of  “wakeful unresponsiveness... where the eyes are open but there is no awareness of self, others, or the environment.” In the years that followed, this paper, together with the landmark 1976 case of New Jersey resident Karen Ann Quinlan, led to the emergence of the right-to-die movement in the United States and, with it, new legislation.

Since then, legal cases that invoke this legislation have invariably been based on patients' apparent loss of consciousness and autonomy, and the vegetative state has played a central role in the right-to-die debate.

One of the bigger challenges for doctors treating people who have disorders of consciousness is how hard the conditions are to diagnose. We now know that more than 40 percent of patients who are diagnosed as being in a persistent vegetative state are actually minimally conscious; this has profound implications for prognosis, setting expectations as to how far a person will heal. What's more, some patients diagnosed as being in a persistent vegetative state, and so deemed unlikely to recover, do become minimally conscious months, and in some cases even decades, later.

Patients’ families thus have to navigate this diagnostic maze, uncertain if, and to what extent, their loved ones will recover from their injury and, according to Fins, dealing with a healthcare system that is consistently failing them.

Due in part to the complex nature of consciousness disorders, the lack of knowledge about them, and the “lingering nihilism” regarding severe brain injuries, patients who have the potential to recover are often subject to decisions to uphold or withdraw life-sustaining therapy, and their families asked about organ donations, without being given the chance to express their own desires.

“Patients like Maggie are routinely misdiagnosed and placed in what is euphemistically called custodial care,” said Fins. “We've been treating them like they're in exile from the human community. That's inhumane and unjust, and a national scandal that we need to correct.”

Fins has been at the forefront of researchers' efforts in using neurotechnologies to improve diagnosis of patients with disorders of consciousness, and has also spearheaded attempts to both raise awareness about the conditions and provide patients with the kind of care and treatment they need. 

The right to human contact

It is, he argued, an ethical imperative that we view consciousness as a fundamental civil right, that patients with consciousness disorders be diagnosed accurately, and we should not segregate them from their loved ones, or deprive them of access to any treatments that might facilitate recovery or foster their ability to engage with others.

“It's cruel to deprive a conscious individual of the opportunity to experience human companionship and community,” said Fins. “That possibility is extinguished when consciousness--that spark of personhood upon which our collective relationships hinge--is overlooked or ignored.”

“We can and must do better, and neuroscience is beginning to provide the tools to make this possible, but the question is: Will society be ready for the consequences?” he said. “I have faith in what my scientific colleagues might achieve, but I'm less certain that society will embrace the civil rights of these individuals. That struggle needs to begin now, lest we lose the opportunity make a difference for them and their families.”

 Disclaimer: Moheb Costandi sits on the Board of Directors of the International Neuroethics Society


reply to Ms. Faulkner

Ms. Tierney

9/19/2016 10:39:08 AM

Your sister's, your so so sad and difficult situation, well I am honored that you reached out, let others hear about your struggles. That said, you are a hero. With your help, me without a crystal ball, I predict your sister will recover far beyond expectations. Words cannot convey how I admire you. There are no bad guys here, just super-girl, love, and hanging in, day after day. A hero.

minumally consiouness

gayle faulkner

12/4/2015 10:25:06 AM

my sister is in nursing home with this problem, for 1 yr as of 17th of Dec. Drs told us she would never regain a conscious state, to just let her go. I refused. Medicaid has pulled all therapy from her telling us that's as far as she could go. I have been with her almost 24/7 . I noticed her starting to cry about 3 mos. ago and started playing music and talking to her telling her what is happening. About a month ago, i insisted on her trach being removed, and now to pull oxygen off. Her oxy level is at 97. She is talking now and when she is awake, is very aware of what is happening. I tell her why, and where she is. She is wanting to go to church and she remembers the people from her past. It is amazing how her brain is opening up. I am working on her arms and legs since they are posturing from no therapy. It is tragic that the therapy was withdrawn , like she is a vegetable and doesn't deserve it. Can you help me in any form of uplifting me because I have fought for every little thing for her and I need more info to help get her the help she needs. She is trapped in a body that doesn't work,but her mind is coming back. Thanking you for your response.