Bobby Schindler is president of the Terri Schiavo Life & Hope Network and associate scholar at the Charlotte Lozier Institute. Bobby advocates for the medically vulnerable in honor of Terri Schiavo, his sister. A full-time advocate, speaker, and writer, Bobby and the Terri Schiavo Life & Hope Network have been instrumental in providing resources and support to more than 2,700 patients and families at risk of euthanasia, assisted suicide, and denial-of-care situations from physicians, hospitals, insurance companies, and others. In this interview he discusses the ethics of providing food and water to medically vulnerable patients, and the importance of building up a culture of life in our everyday actions.
Bobby Schindler, M.S.
When people hear the term “pro-life” they generally think about the abortion issue. Can you tell us about the work you are doing in other vital areas of the pro-life movement?
Bobby Schindler: Far too often, “pro-life” just means “abortion” in the minds of many people. But to be pro-life is to embrace life across the whole spectrum from the moment of one’s conception to the moment of one’s natural death. You will sometimes hear the phrase “whole life” or “consistent ethic of life.” In any event, our work at the Terri Schiavo Life & Hope Network concerns issues of basic care, euthanasia, and forms of physician-enabled suicide.
The Terri Schiavo Life & Hope Network itself is a nonprofit organization founded in 2005 as a response by my family to my sister Terri Schiavo’s death by denial of basic care. Our mission is “upholding human dignity through service to the medically vulnerable.” We express this mission through advocacy of essential qualities of human dignity—particularly the right to food and water, the presumption of the will to live, due process against denial of care, protection from euthanasia as a form of medicine, and access to rehabilitative care. Our Crisis Lifeline, meanwhile, provides patient and family advocacy for persons facing denial of care, as well as attorney and physician referrals, spiritual and emotional support, and ethical guidance.
Since our founding, we have been fortunate to encounter so many good people, and to have served more than 2,700 patients and families in need of all of sorts of assistance.
What is the difference between “ordinary care” and “extraordinary medical treatment” especially as it relates to providing food and water for medically vulnerable persons?
Bobby Schindler: First, a distinction needs to be made between ordinary or proportionate treatment, extraordinary or disproportionate treatment, and basic care.
Basic care is care that should always be accepted by or provided to a person such as food and water, and bathing. Similarly, ordinary and proportionate treatment refers to ordinary and common medical treatments that offer hope of benefit and are not overly burdensome to the patient. Extraordinary or disproportionate treatment is medical treatment that is neither obligatory nor necessarily good for a person depending on his or her circumstances.
There is an incredibly important distinction to be made between refusing extraordinary or disproportionate treatment—either when death is truly imminent or when one would not benefit from such treatment—versus refusing ordinary and proportionate medical treatment or basic care with the intent to cause death.
It is currently legal in every U.S. state to withhold or deny food and water by means of a feeding tube to patients who are not actively dying and who are not facing any active “end of life” issue. In other words, it is presently legal in every state to deliberately bring about the end of a patient’s life by denying a non-terminal patient food and water. We tend to classify these cases as “end of life”—but that classification often papers over the fact that it was a patient, family member, physician, or the medical system itself who sought to intentionally end a life.
The intentional withholding of food and water, with the intent to bring about death, flies in the face of the inherent function of medicine as a fundamentally life-affirming, curative, healing, and caring profession; it also ignores a historic precedence in medical understanding which long held that as long as someone could benefit from food and water—meaning that it was nourishing them, they could physically metabolize it, and that it wasn’t causing them disproportionate discomfort, etc.—then it would be wrong in principle to deny this vital and basic form of care.
The accepted understanding of providing food and water as basic care shifted in a series of medical and legal changes over the course of the 1980s; these changes resulted in tube-supplied food and water being reclassified from “care” of a basic, nursing variety, to being considered a “medical treatment” functionally equivalent to artificial life support similar to a ventilator.
What steps can individuals take to protect themselves from being deprived of food and water in medically vulnerable situations?
Bobby Schindler: The best way an individual can ensure access to food and water, as well as other forms of appropriate care, is to execute a health care power of attorney. A health care power of attorney is a document that allows you to designate a specific, trusted person to make critical medical decisions if you are not able to speak for yourself. It is a simple and smart way to ensure that ethical and appropriate decisions are made by someone trusted and known.
Why avoid an advance directive or living will? These types of documents can be easily misinterpreted by health care providers, or even ignored in extreme situations; these documents can only speak narrowly to specific and hypothetical situations that may not apply in real world circumstances.
What cultural and societal factors do you see as the most important in strengthening the culture of life?
Bobby Schindler: Naturally, no one wants to find themselves in a situation of diminished autonomy or independence, let alone disability or injury. But in our daily lives, we can do better by choosing to love, care, comfort, and encourage individuals facing these trying situations.
What this means, practically speaking, is developing a willingness to heroically witness a culture of life and love in our own lives, in our own families, and in our own neighborhoods. Just as important as public advocacy, legislative efforts, and so forth, are concrete actions like taking an ailing family member into our homes, helping care for them, looking after them, and visiting and loving those forgotten in hospice, nursing homes, and other facilities.
A healthier, more humane culture: that is what all people in a human society ultimately desire, and we can all work toward that by being more loving and neighborly than cynical and ideological with one another. And along the way, we might just start speaking a single and shared language with one another once more—one that affirms life, love, and compassion.
Why are you pro-life? If you had 60 seconds to explain to someone why you have pursued the work that you have throughout your career, what would you tell them?
Bobbly Schindler: I grew up in a Catholic family and my formation, both through my faith and family life, certainly helped me understand concepts like “human dignity” and “respect for the human person” differently than some of my secular friends who tended to prioritize autonomy or physical independence, sometimes at the expense of all other values.
However, it was really my family’s decade-long struggle to provide life-affirming care for my sister, Terri, that impassioned me to dedicate my life to advocate for medically defenseless persons. Indeed, as older generations pass away and I grow older myself, I’ve seen too many friends and fellow Americans embrace a corrosive, compromised sense of liberty; namely, the liberty of the strong to impose their will on the weak.
In some situations, continuing a person’s treatment near the end of her natural life might become burdensome and justify cessation—but that never means the person herself has become burdensome. In other situations, a person who needs time, love, care, and rehabilitation desperately needs a heroic advocate who recognizes that a temporarily diminished quality of life should never obscure that a whole life, with a bright future, still lies ahead with the right care and encouragement.
Simply put, every human life is fundamentally valuable simply because it is human. We are each a member of the human family, and to the degree that we exclude certain of our brothers and sisters from membership in that family, as Carter Snead at Notre Dame’s Center for Ethics and Culture so often points out, we risk creating a terribly unjust and frankly oppressive society. We can do better.
Bobby Schindler’s full biography can be found here.