Terri Schiavo. Her name — my sister’s name — is seared into the national memory as a face of the right-to-life movement, but it’s now been more than a decade since her death. Many are now too young to remember her witness, or they have forgotten.
At the age of 26, Terri experienced a still-unexplained collapse while at home alone with Michael Schiavo, who subsequently became her guardian. After a short period of time, Michael lost interest in caring for his brain-injured but otherwise young and healthy wife. Terri was cognitively disabled, but she was not dying, and she did not suffer from any life-threatening disease. She was neither on machines nor “brain dead.” To the contrary, she was alert and interacted with friends and family — before Michael placed her in a nursing home and eventually petitioned the courts for permission to starve and dehydrate her to death.
It was this decision by Michael that made my sister’s story a national story rather than simply a family story. It was this decision — to deprive my sister of food and water — that transformed our family’s struggle. Rather than trying to work with Michael to care for and rehabilitate Terri as aggressively as possible, we now were battling against Michael to fight for my sister’s life.
Michael finally testified, after many years of legal maneuverings against my family, that Terri had told him before her accident that she would not have wanted to live in a brain-injured condition. It was this hearsay evidence that led the media and others to deny Terri’s right to life, and instead speak of “end of life” issues and advocate for her “right to die.” On the order of Judge George W. Greer, and despite the efforts of Saint John Paul the Great, a president, Congress, and a governor, Terri was deprived of water and food. After 13 days, my sister died of extreme dehydration on March 31, 2005.
We couldn’t save my sister, though millions of advocates did succeed in speaking for the fundamental dignity of every human life, regardless of circumstance or condition.
It was the trauma of our experience fighting for my sister that led my family to create the Terri Schiavo Life & Hope Network a decade ago, both in memory of my sister and in service to medically vulnerable persons today. Unbeknownst to my family at the start of our struggle, the method of Terri’s death — the fatal denial of food and water — was not altogether uncommon. It has only become more common in the decade since her passing, as Wesley J. Smith so routinely documents.
Indeed, new “rights” to death are paradoxically being enshrined through the international medical system, reshaping a vocation meant to care for and heal the sick into one that eliminates suffering by eliminating the sufferer. Increasingly, medical professionals do this — end life — even without the patient’s consent. A stranger, in other words, may very well decide how and when you die.
It was once true, for instance, that food and water were considered “basic and ordinary care.” Yet now the presence of a tube (as distinct from a spoon) to deliver food and water means that basic nourishment is considered “extraordinary” and a form of “medical treatment.” Yet tubes are often used for the same reason that automation is revolutionizing the work force: They’re cheaper and more efficient than round-the-clock human care. It is now legal in every U.S. state to deny food and water, leading to fatal dehydration. This is simply one step on the path to controlled and regulated access to all forms of food and water, including whatever a bureaucrat decides can be placed on your mother’s nursing-home supper tray.
Hospital ethics committees are often leading the effort to reshape medicine, giving themselves unilateral power to decide whether a patient deserves to receive treatment or whether life-affirming treatment will continue when there is a dispute within a family. The tragic case of Chris Dunn, who was filmed last year literally begging for his life in a Texas hospital, illustrates all too well what happens when an ethics committee decides to appoint itself as a legal guardian in order to deny treatment — even when such a course is opposed, as it was in Dunn’s case, by both the patient and his guardian-mother.
Not only is death often imposed, it is now also encouraged as if death itself were a form of medicine. As of last year, more than half the states in the country were considering a form of physician-assisted suicide legislation. It appears likely that suicide will, within the next five years, be enshrined as a personal “health” right in most of the country. In this, we would only be following some of our European neighbors. In the Netherlands and Belgium, as Wesley Smith recently documented, Alzheimer’s patients, infants with disabilities, the aged, and the chronically ill are routinely encouraged to die or have death imposed upon them.
Brittany Maynard, who committed suicide in November 2014 after already having outlived her doctor’s terminal-brain-cancer prognosis, was able to choose her death by suicide, but how many now will die not because they embrace that sort of death but because they feel pressured — by smiling physicians or hovering children and heirs — to accept it? To die without hope seems the furthest thing from death with dignity. Other, less fortunate patients will face what Smith explains is considered “termination without request or consent,” a wonderfully anodyne way to describe murder through terminal sedation or the denial of food and water.
My experience in fighting for my sister, and the experiences of assisting more than 1,000 patients and families through the Terri Schiavo Life & Hope Network over the past decade, have strengthened my resolve and my belief that we can do better as a culture, and for those requiring authentic medical treatment, than what our present attitudes and laws suggest.
It’s why the Terri Schiavo Life & Hope Network affirms essential qualities of human dignity, including the right to food and water, the presumption of the will to live, due-process rights for those facing denial of care, protection from euthanasia as a form of medicine, and access to rehabilitative care. Each of these were rights my sister was denied, and they are rights of every patient that are often at risk or contested outright.
As we mark the anniversary of my sister’s death, I’m hopeful that we can remember some of these genuine means of upholding human dignity. If we do, we can be assured that when we face crisis in our own lives and the lives of those whom we love, we will meet the moment with a dignity and grace that elevates us in our weakest moments — regardless of the outcome.
That was the promise of medicine once, and it’s what my sister continues to inspire me to fight for daily.