BreakPoint: Minimally Conscious, not Minimally Human

Caring for the “Smallest” of Lives

What gives human life value? How we answer that question will determine who lives and who dies. Stay tuned to BreakPoint.

In the movie “Monty Python and the Holy Grail,” comedian Eric Idle leads a cart full of dead bodies through a plague-ravished medieval village yelling, “Bring out your dead!” Python’s John Cleese approaches the cart carrying a very old man on his shoulder. Cleese points to the old man and says “here’s one!” whereupon the supposedly-dead man protests, “I’m not dead.”

By way of proof, the old man says, “I think I’ll go for a walk.” But the characters played by Idle and Cleese are busy men who can’t be bothered. In the end, the old man ends up on the cart.

When I saw that scene as a teenager, I thought it was hysterically funny. Now, not so much—especially since the way we decide who lives and who dies these days is getting nightmarishly scary.

What brought the Python skit to mind was a compelling article in the New York Times by physician and bioethicist Joseph J. Fins entitled, “Brain Injury and the Civil Right We Don’t Think About.”

In it, Dr. Fins tells the story about a young woman named Maggie. While still in college, she had suffered a “complex stroke” involving “areas deep in her brain.”

As a result, she was thought to be in a “vegetative state,” a state “most of us associate with … the legacies of Karen Ann Quinlan, Nancy Cruzan and Terri Schiavo.”

Medically speaking, people in a vegetative state are “able to regulate their heartbeat and breathing without assistance,” but otherwise don’t display “any meaningful responses . . . or show [any] signs of experiencing emotions.”

But it turns out Maggie was not in a vegetative state. She was in a “minimally conscious state,” or MCS. People in a MCS “demonstrate intention, attention and memory.” In Maggie’s case, she was even able to communicate through eye blinks.

The problem is that these demonstrations of consciousness often happen intermittently, so when family members tell medical staff about them, these reports are often written off as “wishful thinking.”

MCS was not formally recognized until 2002, which prompts a disturbing question: How many people whose food and water were withdrawn were conscious of what was happening to them?

A study Fins cites suggests that the answer could be “a lot.” The study “found that 41 percent of patients with traumatic brain injury … and thought to be in the vegetative state were in fact in MCS.”

Dr. Fins goes on to point out the human brain is remarkably resilient. His colleagues documented how Maggie’s brain rewired itself over the years, enabling her to interact with others. That raises the question of how willing we are to provide folks like Maggie the medical and rehabilitative care they need to live what many among us might consider to be very limited lives.

But as Dr. Fins writes, “What is at stake here is more than a simple insurance question or access to care. It is a more fundamental question of basic civil rights, leaving conscious individuals isolated and abandoned.”

Even something as simple as pain control is often denied these people, who are “unable to cry out in pain.” This Fins says, “constitutes a disrespect for personhood that should be beyond the pale in any civilized society.”

Maggie eventually passed away. But as her mother told Dr. Fins, for her daughter it was “enough to have a life, even a small life,” adding, “I think a small life is O.K.”

It certainly is. In fact, every life is holy. Not because of what a person can or cannot do, enjoy or not enjoy, but because each and every one of us bears the image of God. And how we treat even the smallest of lives shapes the society in which we live—and our souls as well.

Minimally Conscious, not Minimally Human: Caring for the “Smallest” of Lives

As Eric emphasizes, the imago Dei is in everyone. Dr. Fins’ research demonstrates yet again  how important our respect for life should be.

Resources

Brain Injury and the Civil Right We Don’t Think About
  • Joseph J. Fins | New York Times | August 24, 2017

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  • Steve

    Thank you Eric. We must continue to be vigilant to advocate for life as society gradually whittles away at the rights of the most vulnerable. It would be a different world if people put themselves in the position of the person in the MCS or the nonagenarian in poor health or the fetus awaiting birth. If decisions about life were made with that in mind we might have a more life-affirming culture. John Rawls wrote about the “veil of ignorance”. Essentially this was a thought experiment in which an individual did not know what his/her situation was going to be but they had to make an ethical decision nonetheless. For instance, would someone be “pro-choice” if they did not know whether or not their mother would wish to abort? Would they be in favor of discontinuing life support in the MCS individual if they did not know whether or not they were going to have a brain injury?
    As society becomes more secularized and turns away from God and transcendent principles of right and wrong, we find that we make ourselves into God. This leads down paths of destruction as we have seen in the murderous 20th century and the abomination that is abortion.
    I urge everyone to read Alexander Solzhenitsyn’s speech upon receiving the Templeton Award in the early ’80s. In it he describes what happens to society when “men have forgotten God.”
    And no, I am not talking about imposing a particular religion upon the whole society. I am talking about returning to basic principles founded in transcendent truth. C. S. Lewis would call this “turning back the clock” in order to correct our path.

  • Just One Voice

    Thanks Eric.

    Heh, this was one of those articles where I pause and think, some groups are fighting so viciously for their right to live this kind of life or that kind of life. WELL WHAT ABOUT THE BASIC RIGHT TO LIVE?!

    Indeed, “the way we decide who lives and who dies these days is getting nightmarishly scary.” Some of these doctors need to get off their high horse. It’s amazing they haven’t fallen of the horse yet, considering how drunk they are on themselves.

    *end rant**pause*

    I have a soapbox about this whole thing, seeing that I’ve suffered from epilepsy my whole life. I have no doubt there were times where, in some peoples’ eyes, I would’ve been in that pool of “should he live or should we throw him out?”

    Well, here I am in my mid-30s, getting my third college-level degree, married, two kids, responsible home-owner, etc.

    Thinking of 1 Corinthians 8:1-2 …we know that “all of us possess knowledge.” This “knowledge” puffs up, but love builds up. If anyone imagines that he knows something, he does not yet know as he ought to know.

  • Thomas A. Szyszkiewicz

    The 1944 film Arsenic and Old Lace is another one of those movies that was prophetic about euthanasia, though at the time they thought they were just being farcical.

  • Phoenix1977

    “A study Fins cites suggests that the answer could be “a lot.” The study “found that 41 percent of patients with traumatic brain injury … and thought to be in the vegetative state were in fact in MCS.””
    That’s quite a scientific answer: “a lot” …

    “Dr. Fins goes on to point out the human brain is remarkably resilient. His colleagues documented how Maggie’s brain rewired itself over the years, enabling her to interact with others”
    And does Dr. Fins also described all the suffering Maggie’s body went through during those years? Or her psychological suffering for being aware but not able to interact or communicate?

    “Even something as simple as pain control is often denied these people, who are “unable to cry out in pain.” This Fins says, “constitutes a disrespect for personhood that should be beyond the pale in any civilized society.””
    I completely agree. So I take it Dr. Fins also developed a way to register pain in MCS patients? Because if we simply give them the maximum of painkillers we will turn them into a vegetative state automatically. That is, if we don’t kill them by overdosing them.

    “But as her mother told Dr. Fins, for her daughter it was “enough to have a life, even a small life,” adding, “I think a small life is O.K.””
    Maggie’s mother gave her interpretation of the limited ways Maggie could communicate. However, who says that was indeed what Maggie felt? Only those close to Maggie could interpret her communications and even than we can never be sure her brain didn’t rewire itself in a wrong way. After all, stroke patients are known to develop psychiatric problems like bipolar disorder, depression and sometimes even dissociative personality disorder. Virtually all loved ones of stroke patients say the patient is no longer the same person as they were before the stroke. Not to mention the number of patients nowadays diagnoses with vascular dementia now that more and more stroke patients survive their stroke.

    Articles like this are dangerous. They give patients families false hope. I can’t count the number of times patients loved ones are coming to see me with prints of these kind of stories, asking me if this could also be the case for their loved ones. I see the glimmer of hope in their eyes, given to them by people with agendas that are not in the patient’s best interest or that of their families. And I hate to have to be the one to take that hope away from them again. So, Eric and others, please stop feeding patients false hope with wonder stories like this one and leave the diagnosis of patients and talking to their loved ones to the ones who actually have had an education in that field. It saves both patients families and doctors a lot of heartbreak.

    • EBurkeDisciple

      The God of science and “the experts” has demonstrated their need and, thank the all mighty, their willingness to revise the facts of science on a regular basis. Your faith, no, your ultimate confidence is misplaced.

      • Phoenix1977

        At least my confidence has a basis in reality. What is yours based on?

        • Gina Dalfonzo

          The tone is getting a little out of line here, you two. Let’s rein it in, please.

    • Steve

      Patients and families need to be more educated these days otherwise they may encounter doctors who find it more expeditious to end their lives rather than treat them

      • Phoenix1977

        Even if patients and there families are more educated it won’t make a difference. Life support, as we have seen in the case of Charlie Gard, and other procedures are medical treatments and therefor at the discretion of doctors. They cannot be demanded by patients. So if doctors “find it more expeditious to end their lives rather than treat them” there is very little a patient or their families can do about it.

        • Steve

          So the doctors have the final say in your opinion? That is not how it works in the U.S. In fact, doctors are lead by a standard of care which they must provide. If they don’t they can have their licenses revoked. For instance, if a doctor does not think that an older patient should be intubated, and yet it is medically indicated and the patient wants it, the doctor is required to do it under the standard of care. If they do not, they can be sued and lose the right to practice.
          Your logic is interesting Phoenix. On one hand you say that patients cannot demand treatments if the doctor does not want to do it and yet in many of your arguments in favor of abortion and euthanasia you argue that doctors may be required to perform these procedures if the patients wish to have them.
          Which will it be, tyrannical doctors or puppets?