Progress on ‘unresponsive wakefulness’

Richard Doerflinger writes on the American Academy of Neurology’s recently released guidelines on care for patients like Terri Schiavo:

Court cases involving patients like Nancy Cruzan, Nancy Ellen Jobes and Terri Schiavo have established a broad right to discontinue feeding and let patients in a vegetative state die of dehydration.

Now enters the American Academy of Neurology with new guidelines on treatment of these patients, developed along with other experts and the National Institute on Disability, Independent Living and Rehabilitation Research. This group’s findings and recommendations are game-changing:

  • A more descriptive term for “vegetative state” is “unresponsive wakefulness syndrome.” (This will be welcomed by families who don’t appreciate their ailing loved ones being compared to broccoli.)
  • There is a significant chance for rehabilitation (sometimes allowing patients to return home and resume employment) even in patients who have been in this state for a year or more, so “continued use of the term ‘permanent vegetative state’ is not justified.” The term “chronic” should be used, as it does not imply irreversibility. Protocols are recommended for enhancing the prospects for recovery.
  • Studies show that the likelihood of misdiagnosing the condition is about 40 percent. This includes cases where patients diagnosed as “vegetative” actually had locked-in syndrome, where they cannot respond but are fully aware (so presumably they can hear their doctors calling them vegetables).
  • One study found that 32 percent of patients with severe traumatic brain injury died in the hospital — but 70 percent of the deaths were due to withdrawal of life support, and such withdrawal had more to do with the facility where care was provided than with the severity of the symptoms.

In short, our medical system has been giving up on far too many of these patients, prematurely ensuring their deaths based on faulty diagnoses and self-fulfilling hopeless predictions.

Bobby Schindler and I wrote earlier this year on the increasing shift from describing brain injured persons as “vegetative” to instead experiencing “unresponsive wakefulness:”

What was essential in their recoveries from the standpoint of their families and caretakers was, first, a willingness to acknowledge a certain powerlessness — We cannot always make our loved ones better by our own power — and, second, a willingness to embrace uncertainty about their ultimate fate — Are they still really ‘with us’? Will they ever fully recover?— yet an even stronger willingness to live hopefully and with the sort of care that could provide an environment for life and for recovery.

Every person intuitively knows in his or her heart that what makes the special people in our lives so special is not what they do for us, but instead who they are. Every person who matters to us is a gift, always unearned, and often unexpected, whose particular value is incalculable and priceless.

Yet our medical culture is designed increasingly to also be an accounting culture, which necessarily introduces some temptation to view those for whom it was originally created to care unconditionally not as gifts, but as products.

In aggregate, this results in treating patients as a sort of raw human material whose potential future worth, just like a rising or falling stock, dictates their present value.

For example, unresponsively wakeful persons are not “attractive investments” in a profit-driven medical and accounting culture, and this means that families facing such a diagnosis will have to be particularly brave in providing the sort of safe havens and environments for potential recovery from which Terri Wallis, Martin Pistorius and Patricia White Bull each benefited in their own way.

For a society wishing to be humane, no “unresponsively wakeful” patient who is not dying can be allowed to fall victim to an imposed death of starvation and dehydration by removal of so-called “artificial” food and water. It is neither a natural nor a simple way to die.

Encouraging to see the American Academy of Neurology rejecting the sort of medicine-governed-by-accountants culture and But what can they do in this condition? thinking that has led to the deaths of Terri Schiavo and countless others.

Obianuju Ekeocha at Georgetown

Attended Obianuju Ekeocha‘s talk at Georgetown tonight. Uju is one of best pro-life advocates in the world, and having followed her for a while it was great to hear her speak and meet her for the first time. I was on a conference call on my way to the talk and unfortunately missed the first 10-15 minutes, but recorded the rest. I think Georgetown Right to Life streamed or recorded the entire talk. Uju riffed on some of the themes of her book “Target Africa: Ideological Neo-colonialism of the Twenty-first Century” and spoke with the joy and warmth that should mark every advocate of life.

Tonight was also my first time in Gaston Hall, finished around 1901 I think. What an incredible environment. The whole play conveys some of the best things about any real university: What you think matters. What you say matters. How you live matters.

Obianuju Ekeocha (Uju), the founder and president of Culture of Life Africa, has dedicated her life to promoting the sanctity of life, blessings of motherhood, and right to family. The youngest of six children, Uju was born in southeast Nigeria. She earned her Master’s degree in biomedical science from theUniversity of East London and her Bachelor’s degree in microbiology from the University of Nigeria. She served as a medical laboratory scientist with the University of Nigeria Teaching Hospital, and in 2006, she moved to the United Kingdom to begin her work as a biomedical scientist in hematology.

Culture of Life Africa facilitates numerous pro-life conferences and March for Life rallies in Africa. This has been made possible through Uju’s close affiliation with African members of Parliament, United Nations delegates, ambassadors, and decision makers on pro-life and pro-family issues.

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Autonomy of violence

Bobby Schindler articulates a view of autonomy that he and I have been talking through for a while, which is that an “autonomy of violence” and self-harm pervades life and ethics issues. He writes in CatholicPhilly.com about this, and includes a survey of practical examples around the world that’s worth looking over if you’re not familiar with what’s happening:

Attacks on autonomy and human dignity appear to be intensifying.

Autonomy, of course, refers to our ability to act as independent human beings, with an innate and inviolable human dignity inherent to each of us, regardless of our physical, medical, emotional, psychological, or financial circumstances.

It seems as if so many, however, are intent on reconsidering autonomy to mean something like an “autonomy of self-harm.” In other words, many are using autonomy as a means to advocate for forms of euthanasia and assisted suicide.

Yet autonomy has traditionally referred to human good; our ability and desire as well as power to achieve a good life in cooperation with our loved ones, neighbors, fellow citizens, and others. It’s a tragic and perverse situation to use autonomy as a rhetorical battering ram for advocating the rights of human beings to intentionally end their own lives.

As so much of our attention is focused on dramas of the political arena, stories which ought to be receiving attention are simply not. Certainly, meaningful public dialogue surrounding issues like autonomy and human dignity are not taking place in any sustained manner. …

Autonomy means nothing if we allow laws or medical perspectives to compromise the innate and inviolate human dignity each person possesses, regardless of their state of health. When someone is encouraged to accept euthanasia or assisted suicide, and even worse, when individuals are forcibly euthanized against their will or without consent, the power of law and medicine become weapons rather than shields.

No humane society can accept the normalization of intentional human killing.

In practice, we’re too often favoring a simplistic “might makes right” sort of ethics when it comes to life and death issues, where autonomy exists in a limited way—enabling a sort of “autonomy of the powerful” to impose themselves and their judgments on comparatively weaker persons.

The same thing, with white gloves

I missed the initial report last month when Pope Francis spoke bluntly about the use of abortion as a eugenic instrument:

Pope Francis on Saturday called the practice of having an abortion after pre-natal tests have discovered possible birth defects a version of Nazi attempts to create a pure race by eliminating the weakest.

Francis made the comparison in a long, off-the-cuff address to a members of a confederation of Italian family associations.

“Children should be accepted as they come, as God sends them, as God allows, even if at times they are sick,” he said.

Francis then spoke of pre-natal tests to determine if a fetus has any illnesses or malformations.

“The first proposal, in that case, is ‘Should we get rid of it’? The killing of children. And to have a more tranquil life, an innocent is done away with,” he said.

“I say it with pain. In the last century the whole world was scandalized by what the Nazis did to pursue the pureness of the race. Today, we are doing the same thing, with white gloves.”

Under Nazi eugenics programs, hundreds of thousands of people were forcibly sterilized and tens of thousands killed in an attempt to “clean” the chain of heredity of those with physical or cognitive disabilities.

Good for Pope Francis for speaking so clearly on this. Our individualistic, autonomy-cherishing, consumerist attitudes need these sort of gut-checks.

If we’re going to accept the logic that we can eliminate developing human persons due to predicted characteristics or disabilities, it’s hard to understand why we shouldn’t also accept Peter Singer’s logic that we should be able to eliminate born-but-undesired or born-but-ailing human persons for the same reasons.

And that would lead, certainly, to a freer and more autonomous society, but it would also be a liberty obtained by the strong at the expense of the weak in a society wherein no one’s rights are ultimately secure.

To Vita Institute

I’m in Charlotte right now on a layover, headed to Notre Dame for the next week or so. Notre Dame’s Center for Ethics & Culture is hosting its Vita Institute, which I’ll be a participant in this year. I attended Vita Institute’s New York one day seminar earlier this year, and that made participation in the full program attractive:

The Notre Dame Vita Institute is an intensive interdisciplinary training program for leaders in the national and international pro-life movement. Through engagement with our premier faculty, interaction with other pro-life leaders, and exposure to award-winning community outreach programs, the Vita Institute aims to further enhance participants’ expertise and prepare them to be even more effective advocates on behalf of the unborn.

Held for a week every summer on Notre Dame’s beautiful campus, this program is wholly unique: it provides participants with the opportunity to study the fundamentals of life issues with world-renowned scholars across a wide range of disciplines, including social science, biology, philosophy, theology, law, communication, and counseling. Lecture topics include:

  • The Personhood Debate in Contemporary Philosophy
  • Abortion Jurisprudence
  • Basic Human Embryology
  • Dos and Don’ts of Public Policy on Human Life
  • Helping the Abortion-Minded Woman Choose Life
  • Legislative Strategies for the Current Decade and Beyond

It’s often pointed out that the “right to life” is the right that makes every subsequent right possible. As a culture, we should be doing everything we can to support mothers and fathers facing unexpected pregnancies as much as we provide meaningful care for the aging, elderly, and disabled, and everyone in between through better community life and better social and political responses to crisis.

The promotion of suicide as a good and legitimate response to old age’s feelings of loneliness or doubt about the meaning of life as one’s abilities fade is particularly tragic to me. We celebrated Dr. David Goodall’s recent suicide and mourned and lamented Anthony Bourdain’s within the span of four weeks, all the while ignoring the essential questions of meaning, purpose, and appropriate responses to psychological distress that certainly impacted both decisions.

As long as we perpetuate violence against human life in the name of “autonomy” or “self-actualization” or “health and wellbeing,” we’re falling short of our ideals as a people—and worse, we’re lying to ourselves about the nature of what we tolerate in the pursuit of those ideals.

These are some of the reasons I’m eager to spend the next week participating in this year’s Vita Institute. I might share some of that experience, and will at least share some scenes from Notre Dame and South Bend along the way.

Pursuing what seems good

Ireland has voted to repeal the 8th Amendment to its constitution, which was passed in September 1983 to strengthen its existing law to “recognise the equal right to life of the mother and the unborn.” The specific language:

The State acknowledges the right to life of the unborn and, with due regard to the equal right to life of the mother, guarantees in its laws to respect, and, as far as practicable, by its laws to defend and vindicate that right.

In practice, this amendment was designed to ensure that the principle of equality of human life was recognized at the highest level, and wouldn’t be threatened by judicial or legislative actions. In practice, this meant abortion was permitted only in situations where a mother’s life was in jeopardy. The language above recognizing basic equality passed in 1983 with 67 percent of the vote, and the rejection of basic equality just passed with what looks like 67 percent of the vote. The Save the 8th campaigners on the referendum result:

The 8th amendment did not create a right to life for the unborn child—it merely acknowledged that such a right exists, has always existed, and will always exist.

What Irish voters did yesterday is a tragedy of historic proportions. However, a wrong does not become right simply because a majority support it.

We are so proud of all of those who stood with us in this campaign—our supporters, our donors, our families, and our loved ones. This campaign took a huge personal toll on all of us who were involved, and we have been so grateful for their support.

The unborn child no longer has a right to life recognised by the Irish state. Shortly, legislation will be introduced that will allow babies to be killed in our country. We will oppose that legislation. If and when abortion clinics are opened in Ireland, because of the inability of the Government to keep their promise about a GP led service, we will oppose that as well. Every time an unborn child has his or her life ended in Ireland, we will oppose that, and make our voices known.

Abortion was wrong yesterday. It remains wrong today. The constitution has changed, but the facts have not.

We naturally pursue what we believe is the good, so Ireland’s swing on this particular issue in the space of a quarter century, as it related to what its people define as “the good”, is incredible. It suggests, to me, a continuing triumph of a particular sort of libertarianism, and probably continuing problems in Western nations as people try to sort out whether justice is ultimately a contingent and relative thing, or whether any universal or natural justice exists that reason and law should endorse.

Not choice, but violence

Who are the victims of suicide? There are the persons themselves, who die by their own hand or by instructions to other hands in the case of so-called assisted suicide. They are certainly victims. But what about every person touched by the person who is lost? All these are victims, too. Jason Cipriani shares:

I delivered the speech with confidence, but I did get choked up as the words my mother told me that day came out of my own lips “your dad killed himself this morning.” And again as I talked about turning to my grandma on that day, seeing her completely broken down (something that never happened), hearing her say “I’m really sorry boys. I know exactly what you feel, my mom took her own life as well.” …

A few days later I received my critique sheet which included helpful tips and pointers on improving my public speaking skill set, along with a grade. I don’t remember my grade, I don’t remember one critique listed on that piece of paper. The only thing I remember seeing was “I am a victim of suicide, too. I’m sorry for your loss.”

A victim of suicide? Huh. I’m not the victim, my dad was… wait. I am a victim. I have to deal with the emotional scars created by my dad’s decision for the rest of my life.

Those words and the change in perspective they brought regarding my father’s suicide have changed my entire outlook on life. As silly as that sounds. …

I guess, really, it gave me a title. It gave my emotions, my pain, my hurt, my anger, my sadness, my years of depression growing up.. it gave it all a title. You know how people that are chronically sick without a diagnosis feel relief when a doctor is finally able to identify the diseases attacking their body? I can only guess I felt the same way.

After Michael Novak died, Elizabeth Bruenig shared something he said to her a few weeks prior: “A kind word not spoken takes something out of the fabric of what should’ve been.” A life not lived, but willfully concluded, takes something out of the fabric of what should’ve been for every person who knew them, and many who would have. It is a scandal that journalists and media who are too ready to share the desires of euthanasia and assisted suicide advocates do not hold their feet to the fire on the true nature of what they’re promoting. Not choice, but violence.

French Catholic dialogue

It seems likely that France will make at least some forms of euthanasia and suicide legal later this year, which is why President Macron’s explicit invitation to Catholics to participate in the French public debate on bioethics leaves me feeling conflicted:

French President Emmanuel Macron stressed the importance of a Catholic voice in the country’s political debates, particularly on bioethical issues, in an address to the French bishops April 9.

“What I want to call you tonight is to engage politically in our national debate and in our European debate because your faith is part of the commitment that this debate needs,” Macron told French bishops in a rare public meeting between Church and government leaders in France.

While France was once referred to as the “eldest daughter of the Church,” the country’s legal secularism has required strict neutrality of the state in religious matters since 1905.

In his speech Monday, however, Macron spoke of the important philosophical need for the Church’s voice.

“What strikes our country … is not only the economic crisis, it is relativism; it is even nihilism,” said Macron.

“Our contemporaries need, whether they believe or do not believe, to hear from another perspective on man than the material perspective,” he continued, “They need to quench another thirst, which is a thirst for absolute. It is not a question here of conversion, but of a voice which, with others, still dares to speak of man as a living spirit.”

Father Joseph Koczera, an American priest based in Paris, told CNA that in some ways, Macron’s speech “was quite remarkable.”

“This is a clear challenge to a particular style of French secularism that suggests that, [since] the state must remain neutral, perspectives informed by religion should not be invoked in political debates,” Koczera said.

Macron stressed that “Secularism does not have the function of uprooting from our societies the spirituality that nourishes so many of our fellow citizens.”

“To deliberately blind myself to the spiritual dimension that Catholics invest in their moral, intellectual, family, professional, social life would be to condemn me to having only a partial view of France; it would be to ignore the country, its history, its citizens; and affecting indifference, I would derogate from my mission,” he said.

Macron’s speech comes as bioethical debates continue in France, with parliament preparing to reform its bioethics laws.

It’s a great thing that President Macron is inviting Catholics back to a place in public discourse. But if it ends up merely being a further way to condone an anticipated legalization of forms of euthanasia and suicide by underscoring that “Catholics were given a chance to voice their positions,” after all meaningful decisions had already been made, then it would be an example of cynical political use, rather than meaningful outreach and dialogue. We’ll see.

What Newsweek knew

There’s this debate in America, or what I think is often a sort of pretend debate, about the moral status of the human life that’s in the womb of a pregnant woman. That is, about what precise it is that a woman is pregnant with.

We’re left with two troublesome factions in American life, neither of which do a good enough job stating what they’re after, but one of which tends to purposely confuse in its use of language by making an issue that is obviously about the value of human life into a question of the choice of the strong triumphing over the contextually weak.

The common sense civic debate Americans should be having, which boils down to how one of the wealthiest and most privileged societies in human history should be creating a wide and broad social safety net to ensure that no unexpectedly pregnant woman is encouraged to abort her child because we’re able to provide her with a continuum of care that ensures her life is not “over” due to that child—from incredible welfare benefits to education/workforce training, to child stipends until the child is of a certain age, to housing, etc. But we don’t have that conversation, and that’s largely a scandal and fault of Planned Parenthood and other “choice” advocates who in practice offer only one choice: abortion. They receive more than a billion in public funding annually, and pro-choice attitudes dominate in the media, and yet they’re not using their power and influence to broaden the public debate about the range of options that should be offered to pregnant woman. At minimum, that’s a failure of imagination.

And in the meantime, Americans sometimes debate about what exactly is in the womb. Is it a person deserving of legal protections our constitution claims to offer? Or does is have a lesser moral or legal status? Are 20 week limits on abortion, when we believe the creature can feel pain, for instance, extreme? That’s what we’re debating today.

The development of 4D ultrasound, and of modern medical technologies, help us see into the womb in ways that were impossible when Roe v. Wade was decided. We know more today than Americans could have then. That’s what I grew up hearing.

Yet here’s what Newsweek featured on its cover in 1975:

1975-03 Newsweek Cover

That’s a human life at four months. And it was featured on the cover of a major news magazine months after Roe v. Wade was handed down. Do we know less in 2018 than what Newsweek knew in 1975? We know what’s in the womb, and it seems like we’ve always known. Psychologically, biologically, scientifically we know what abortion does. The questions are all political and cultural and social.

Why we don’t at least mandate that Planned Parenthood be funded to aggressively promote adoption and women’s education and workforce training and childhood stipends, etc. as much as it does abortion is anyone’s guess.

‘Living Wills’ should foster a patient’s will to live

Bobby Schindler and I write at National Catholic Register on Italy’s recent adoption of Advance Directives, or “Living Wills”:

Advance Directives, to the extent that they enable a mentally and physically competent person to outline their authentic and life-affirming medical wishes in advance of situations where their judgement may be compromised, can be good and useful instruments for ensuring that health care be life-affirming and not needlessly extraordinary in nature. What makes Italy’s Advance Directive law so troublesome is its embrace of a euthanasia logic that permits, or even encourages, patients to fatally deny themselves food and water, and further its aggression and violence against the conscience rights of physicians and health care workers whose right to dissent is not recognized. Every one of those more than 700 physicians who appealed for Eluana’s right to basic treatment may one day be forced to choose between intentionally bringing about the death of another Eluana, on the one hand, or being branded an extremist and consequently forced out of medicine, on the other.

Whether one is Catholic, or Protestant, or secular and unreligious, it represents a distortion of medicine’s purpose to conflate Advance Directives and the principle of medical planning with the ability to self-deny or to be denied food and water, which represents neither a costly nor an exotic form of care.

At the true end of life, the human body becomes incapable of metabolizing food and water, which is ultimately why the issue of “food and water” – as if it were an “end of life” issue by its nature – is disingenuous. Characterizing food and water as necessarily an “end of life” issue is a distortion of the reality facing millions of persons reliant on feeding tubes throughout the world each year. A young and recovering alcoholic, for instance, may be reliant on food and water by feeding tube for many months, or even years. In no traditional sense would this person be facing a fundamentally “end of life” issue, yet legislation like Italy’s encourages both the public and the patient to consider such situations in a much more fatalistic way—in a way almost certain to degrade a vulnerable patient’s will to live.

In societies that still officially oppose suicide and recognize the need to offer crisis counseling and emergency support to men and women captured by often fleeting moments of suicidal thinking, we should take the same approach of offering life-affirming care to medically vulnerable patients. Indeed, the daily lives of vulnerable patients may in fact be more consistently grinding on their will to live, especially in cultures like Italy’s whose law now rhetorically implies questions like, “Why not put a permanent end to anxiety? To periodic suffering? To moments of discomfort? To the need for rehabilitation?”

Italy’s parliament should do better by allowing for advance directive planning that fosters a will to live among vulnerable patients, continues to proscribe intentional life-taking, and cultivates life-affirming clinical environments where the conscience rights of physicians and health care workers are paramount in service of medicine’s basic purpose to cure, heal and comfort.

Read the entire piece.