Care, not suicide

I spoke this morning on Fox & Friends in response to Gov. Andrew Cuomo’s recent advocacy of suicide by physician for New Yorkers:

I spoke alongside Kristen Hanson, Community Relations Advocate for the Patients’ Rights Action Fund, as well as Dennis Vacco, former New York State Attorney General. Dennis Vacco successfully argued the landmark 1997 U.S. Supreme Court case Vacco v. Quill, wherein the Supreme Court ruled 9-0 that no constitutional right to physician-assisted suicide exists.

Suicide by physician was made lawful in New Jersey over the weekend, which is apparently what prompted Gov. Cuomo to suggest making it legal in the Empire State, too. We’re living through a time when we think we’re cleverer than we are. Suicide is suicide.

Vincent Lambert and unresponsive wakefulness

Vincent Lambert’s life hangs in the balance in French courts at the moment, as his wife continues efforts to withdraw his food and water (which would lead to his death, due to his brain injury and inability to feed himself) and his parents’ efforts to affirm his right to life and continue providing him food and water, which is all Vincent requires to live. Bobby Schindler and I spoke about Vincent on EWTN’s Pro-Life Weekly this week:

And we also wrote about the issue of care for persons diagnosed with “unresponsive wakefulness syndrome”:

It’s a simple reality that many patients who are not actively dying are nonetheless described as facing “end of life” issues, often simply due to physical or cognitive disabilities.

This is particularly true for patients diagnosed with “Unresponsive Wakefulness Syndrome,” the terminology doctors and patient advocates increasingly prefer to the more pejorative “Persistent Vegetative State” language — though both describe patients with diminished autonomy.

Why would one’s disabilities cause some medical challenges to be termed “end of life” issues? Our modern, utilitarian-minded culture judges one’s “quality of life” by asking “What can you do?” And if it’s judged that you can’t “do” enough, your “quality of life” is said to be “poor” and what for others would be considered basic health issues become strangely re-characterized as “end of life” issues.

Terri Schiavo, notably, was diagnosed PVS shortly after her 1990 collapse and was consequently referred to as a “vegetable” (implication: non-human) in the media. Otto Warmbier, more recently, was instead diagnosed UWS and, even as he died from undisclosed complications resulting from his political imprisonment in North Korea, was spoken about in a way that generally respected his basic humanity. If these two cases can be held up as examples, they illustrate the good and laudatory way in which UWS reduces the overt marginalization of patients with cognitive disability.

Unlike Otto, however, who was presumably reliant on extraordinary life support by the time he returned home, most patients, like Terri, diagnosed UWS, rely on no medically extraordinary care — and indeed, the only “life support” they require is food and water. This is often delivered by a feeding tube because in most cases such patients have lost the memory of how to swallow.

Their situation is sometimes misrepresented as if it were tantamount to supplying oxygen to an otherwise terminal patient whose body is shutting down.

Patients experiencing UWS can be better understood to be experiencing forms of physical and cognitive disability, in contrast to the dreary and misleading portrayal of them as actively suffering, near-death patients.

Since as many as 48 percent of such diagnoses may turn out to be incorrect, and as many as 10 percent or more of such patients ultimately emerge from UWS into an improved state of cognizance, it’s worth asking what “unresponsive wakefulness” means, if it doesn’t mean that someone is facing an end-of-life issue.

Terri Wallis lived for 19 years in an unresponsive state of minimal consciousness after suffering injuries from a vehicle crash. His abrupt and unexpected recovery began with his first word in nearly two decades: “Mom.”

Martin Pistorius was diagnosed as “vegetative” after coming home from school as a boy with a sore throat and slipping into unresponsiveness. Martin lived for more than a decade with full awareness but an inability to meaningfully communicate before recovering and sharing his story.

Patricia White Bull was diagnosed vegetative and unable to communicate meaningfully after complications from the birth of her son. One day, after 16 years in this state, while a nurse was adjusting her blankets, Patricia unexpectedly exclaimed, “Don’t do that!”

These are three distinct, remarkable stories, but each shares the themes of hopefulness and surprise. Each patient required a resilient and continual love, emotional patience and mental fortitude from their families and their caretakers. Their recoveries could not have been precisely anticipated, in the way that we know, more or less, that a child’s birth will surely follow nine months of pregnancy.

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.

On the other end of the life spectrum, Sheva Givre provides beautiful witness to the basic dignity of every human person, regardless of circumstance, in sharing a lesson from raising her daughter Rozie. In an era of prenatal testing influenced by a utilitarian ethic whose purpose is to end the lives of disabled persons in the womb, girls like Rozie face the same challenge that so many UWS patients face in the eyes of physicians and family decision makers: a label of diminished moral status due to diminished autonomy and physical condition.

Yet Sheva writes: “Raising a child with Down syndrome is wonderful and amazing because having children is wonderful and amazing. It makes you realize that a mother’s love is not based on a child’s ability, but on your own ability to accept and give.”

To be accepted and to receive care and attention is what every person diagnosed UWS deserves in a society that claims to care for the disadvantaged, the underprivileged and the vulnerable.

World Youth Alliance Solidarity Forum

Nadja Wolfe and Lord Pomperada from World Youth Alliance invited me to speak earlier this month at their International Solidarity Forum:

The International Solidarity Forum (ISF) is an annual training event hosted at the World Youth Alliance and United Nations headquarters in New York City. The forum brings together WYA members from around the world and subject matter experts to participate in lectures and discussions on topics relevant to ongoing international policy debates. Previous themes include Sustainable Development, Maternal Health, HIV/AIDs and Good Governance.

This year’s theme was Human Dignity and Bioethics. It was a pleasure presenting with Dr. William Breitbart of Memorial Sloan Kettering Cancer Center. His talk precedes mine, and it’s worth hearing particularly for his development of a “meaning centered psychotherapy” for advanced cancer patients. He touched on the scandal that is the Netherlands policy of legal euthanasia for huge number of people with clinical depression, psychiatric illness, psychotic illness, etc. His “dignity conserving therapy” is compelling:

World Youth Alliance has an incredible purpose, and the members I’ve met seem to be uniformly remarkable people:

WYA works at international institutions such as the United Nations, the European Union, and the Organization of American States, as well as with young people from around the world to build a culture that supports and nurtures the dignity of each human person. We bring young people to international conferences and into dialogue with ambassadors, diplomats, and political leaders.  We focus on: international policy and human rights, economic development, social development, global health, education.

WYA trains young people of every background from every corner of the world in each of these areas, training them to advocate for the human person and develop creative solutions to real world problems.

Afterwards Lord Pomperada presented each of us with a certificate, which was a nice gesture. After lunch I headed to Penn Station, and thankfully my train was one of about half heading south that wasn’t cancelled due to the snow.

Inspiriting Mount Nittany

I spoke to the University Park Undergraduate Association, the student government at Penn State, on Wednesday, February 14 (Ash Wednesday) on Mount Nittany’s significance and historical conservation efforts:

As part of the talk, I presented the students with a Square Inch Life Estate Deed to Mount Nittany. Life Estate Deeds are available through the Mount Nittany Conservancy, and are a true, legal square inch deed recorded in the Centre County Office of the Recorder of Deeds.

To learn more of the Mountain’s history and significance, be sure to read Conserving Mount Nittany: A Dynamic Environmentalism or listen to the audiobook version for free.

It was a fun talk, even though it was incredibly difficult to pack much of the substance and depth of either the folkloric or practical conservation efforts of Mount Nittany into what was roughly a 12 minute presentation. There was so much that I didn’t have time to address, particularly the relationship between Mount Nittany and Hort Woods, and some of the more interesting aspects of the “Magic of Mount Nittany” fundraising campaign of the 1980s and the narrative of the Princess Nittany legends themselves. But that’s what the book is for.

Since I served in UPUA, it has developed for the better. I’d guess there were at least 70 people in attendance. (We were sometimes lucky to meet quorum requirements to even conduct meetings in the first year.) I stayed for the entire meeting, and heard about their campus and community initiatives which each seemed to be positive and important for building a better Penn State.

2018 Students for Life conference

I visited the First Baptist Church of Glenarden today near Upper Marlboro, Maryland for the 2018 Students for Life conference, where I spoke with Catherine Glenn Foster of Americans United for Life on human dignity and how best to serve those facing or considering euthanasia and assisted suicide:

It looks like a vibrant and beautiful Christian community, based upon the sanctuary itself and the photos lining the outer hallways. Today it played host to hundreds of young people from around the country who are hungry to serve vulnerable women and men who, across the spectrum, are too often told they have choice yet are handed only one or maybe two real options.

The vigor and service mentality among young people to provide real alternatives to abortion, to euthanasia, to forms of suicide, is inspiring and precisely the sort of service needed to build a more humane culture where authentic autonomy and personal liberty is no longer achieved at the expense of a less fortunate brother or sister.

Leaving Napa Institute

The 7th Annual Napa Institute was great, and like last year I’m sorry to be leaving the presence of so many good people. What’s the point of Napa Institute? I think of it simply as helping foster relationships among Catholics from around the country (and a few internationally) while preparing people to go back out into the world with verve and confidence in their personal, family, and professional lives. I’d guess there were around 600 people here this year, but except for the Saturday night keynote dinner, it always felt far more intimate than that number suggests.

This year’s theme was “Strangers in a Strange Land,” and tied in with Archbishop Charles J. Chaput’s recent book by the same name. How should Christians live in an America that’s largely post-Christian in its instincts, lifestyle, and preferences? It’s a big question, with lots of answers that will work depending on your situation and community. One of the things that sets Napa Institute apart from other conferences is the “continuing conversations” that unfold in a beautiful setting with people over 4-5 days, combined with the fact that the speakers, panelists, etc. who tend to be higher profile generally stay throughout these days and are at the same tables as everyone else during meal times and in between sessions. Everyone is approachable, and most people are super friendly. There’s a great vibe.

I spoke on a panel on the topic of “How to Win the Issue of Assisted Suicide” with Archbishop Chaput, Fr. Robert Spitzer, and Greg Pfundstein. Matt Valliere of Patients Rights Action Fund moderated the conversation, which was a good and rewarding one:

Including a few photos from the past few days below, including one I snapped after our Friday panel with Archbishop Chaput and Bobby and Kristina Schindler. I work with Bobby at the Terri Schiavo Life & Hope Network.

I hope to be back next year.

To attract, be attractive

I’m visiting Penn State today and will be in State College this weekend to help launch the Penn State Leadership Association, the Penn State Alumni Association’s latest alumni interest group. This got me thinking about a few years ago when I was invited along with Gavin Keirans to speak to some of the student leadership in the University Park Undergraduate Association.

(I’m including a photo of Old Willow that I took recently because it was Penn State’s first student tradition, and should be a symbol of ours again.)

I first distributed copies of “Is Penn State a Real University?,” an evergreen book which I think of as a primer for great conversation about Penn State as either a “corporation to be managed” or an “institution to be governed.” When everyone in the room had a copy I spoke loosely following the notes below about the value of cultivating authority by becoming attractiveness in order to be an effective leader.

I’m posting these notes because I think there’s some continuing value when it comes to thinking about leadership. Everyone wants to be a leader, but almost no one talks about what it takes to be a follower. Yet leadership is the yin to followership’s yang. One cannot exist without the other.

A little about me

  • Helped write the University Park Undergraduate Association’s first constitution and served as an off-campus representative in the first assembly.
  • President & General Manager of The LION 90.7fm (WKPS), the campus radio station, founder of Safeguard Old State, and campaign manager for Gavin Keirans’s three student body president campaigns.
  • Chaired capital campaign to create the Robert K. Zimmerman Endowment for Student Broadcasting and helped create Nittany Valley Press.

The role of a government is governance

  • UPUA says it’s a student government, and yet most people on campus don’t know what it is and never will. And this is perfectly fine. Low voter turnout is a sign of constituency satisfaction. Only dictatorships have super high voter turnout—think Hosni Mubarak getting 100% of the vote, etc.
  • The thing is this: What you call “apathy” (low turnout) isn’t apathy at all. Students are tremendously engaged on this campus. There are 700+ student organizations. Your problem is just that they’re just not engaged with you.
  • So how can a student government govern a campus that regards its approach as irrelevant?
  • If governance is cooperative, how are you learning to cooperative with your peers?

‘Raising awareness’ is not a solution

  • The first approach to student apathy toward toward government is some form of “raising awareness”—but there’s not enough oxygen in the room to do this.
  • This model fails because it says, “Let’s plaster this finite bulletin board with more bulletins.” It’s like flooding a Facebook newsfeed—you might raise awareness, but not in a healthy way.
  • When student leaders declare year in and out that its success is dependent on people’s awareness of its existence, it’s basically acting arrogantly. It’s implying that the problem is, “We just haven’t talked about ourselves enough.”
  • There’s no modesty to this approach. There’s no humility there. No one likes going on a date where the guy spends the whole night talking. It’s unattractive.

Learn to be attractive by empowering peer leaders

  • Attractive people don’t have to work to get dates—unless they have bad personalities. And to carry the analogy out, student government is not only unattractive, it’s also got a bad personality.
  • Thought experiment: If a freshman walked up to a student leader and asked “What concretely do you do to build up Penn State?” what would the answer be?
  • Real leaders are servants. They seek to serve others by creating or building up something attractive for everyone to enjoy. Robert Greenleaf coined the term “servant leadership” nearly a half century ago. His seminal book, which is available for $10 on Amazon is “Servant Leadership: A Journey into the Nature of Legitimate Power and Greatness“.
  • Greenleaf’s suggests that real power is earned by submitting yourself to others. In other words, by making friends. And in so doing, cultivating meaningful leadership authority.
  • In this paradigm, peer-sourced authority rather than self-styled power of an office is the source of the strength of a meaningful leader, because a leader is someone others are willing to follow. Leadership requires followership.
  • What am I saying? Campus policy is the least important thing you could focus on. People are the most important focus, because they’re potential friends and allies and mentors and novelties that define the true Penn State experience.
  • Your challenge: Go out across the campus and become personal and personable (personal—this means intimately, not superficially; it means you might go to their wedding or funeral someday). Become friends with trustees and professors and deans and townspeople. Ask them to have you over for dinner. Institute personal coffees and beer meetings like professors have office hours with existing presidents of fraternities and sororities and interesting campus clubs. Go to Rotary, Kiwanis, and church association meetings. If you want to lead, these are the sorts of people you’ll need to get to follow you. And to attract them, you have to learn to be attractive.
  • Let them know you want to be friends. Let them know, “I’m here for you, whatever you need.” In this paradigm, governance becomes a team affair. You can build your own team by meeting existing leaders rather than vying for some abstract level of importance based upon policies that you end up dissatisfied with because of a lack of awareness or interest in dry policy issues.

Learning from past experience

  • What I’m talking about might seem abstract. “How can we be successful if we just make friends with people?,” you wonder. Or: “If we don’t win on policy, or even try to engage in political battles, what is there? If we’re not in Onward State for our new programs?”
  • Yet: What I’m talking about was once real on this campus, and in fact was the definitive model of student leadership starting in the 1930s in a formal way, and which existed even prior informally among class societies.
  • The institutionalized version of this leadership model was called the “All College Cabinet,” and it was a student governance model that empowered existing leaders of campus groups within a single body, with a cabinet-elected student body president and vice president. It was a combination democracy and aristocracy, and it was a tremendously dynamic model.
  • Today we act as if we’re miniature congressmen, and go on talking about ourselves and engaging in policy concerns. It’s not only self-defeating, it’s unattractive.

This community is attractive

  • The beauty of the Nittany Valley is everywhere around us. Our history lives or dies within each of us, depending on how we treat it. And the affection alumni bring back and students naturally have on entering under the shadow of Mount Nittany needs to be conveyed from generation to generation.
  • As leaders (as the elite, the aristocracy, whether you like it or not) this is your fundamental job. To make friends, to be attractive in order to attract, and as Shakespeare said, to treat the world as a stage where you are the actors—which means you’ve got to put on a show worth watching, and worth hearing about.
  • Learn our history. Visit The University Club and make friends with their general manager. Visit University Archives and ask Jackie Esposito to show you something unexpected. Linger in University House that Evan Pugh built and enjoy the LaVies and Archives in Hintz’s Robb Hall. Know and love our dynamic, shared story—and know it intimately through its personalities rather than superficialities.
  • If you come to know it in a authentic and muscular sense, not only will you not repeat its dark spots and failings, but you’ll become interesting and attractive. Freshman will want to hear from student leadership. And people will want to know you personally, which is one of the most relevant life skills you could hope to perfect.
  • And the real University is a place of people, people who come together and come to know one another for a short time, and go off with a common vision to shape the world, before fading into the pages of history’s latest chapter.