Every year, I write to honor my sister, Terri Schiavo, on March 31st, the anniversary of her death, and reflect on the state of our nation when it comes to the treatment of our medically vulnerable.
For those who do not remember, Terri, at the age of 26, experienced a still unexplained collapse while at home alone with her husband, Michael Schiavo, which resulted in a severe brain injury. Despite widespread characterizations that suggested she was near death in the years after her injury, Terri was not dying, and did not suffer from any life-threatening disease. She was neither on machines, nor was she “brain dead.”
Sadly, after a few years of caring for Terri, Michael, who was Terri’s guardian, lost interest in his brain injured, but otherwise healthy, young wife, and eventually petitioned the courts for permission to deliberately starve and dehydrate her to death.
On the order of Judge George W. Greer, Terri was deprived of water and food, and after 13 days, she died on March 31st, 2005 of severe dehydration.
We commemorate “Terri’s Day” each spring to honor her memory and pray for all of our medically vulnerable brothers and sisters. This year, EWTN is commemorating “Terri’s Day” on April 7th through an internationally televised mass with Archbishop Charles J. Chaput, followed by a special interview with Fr. Mitch Pacwa, the Archbishop, and me.
The Network’s Impact
In response to Terri’s death, my family established the Terri Schiavo Life & Hope Network to advocate for medically vulnerable persons. Since the Network’s founding, we’ve been honored to have helped more than 2,500 patients and families access the advocates and resources they need to fight in their time of crisis.
Too often, medically vulnerable persons face having their basic care denied, as rising health care cost, and a “quality of life” mentality continue to influence the care they receive.
It’s not coincidental that every year since the Network’s founding, calls to our 24/7 Crisis Lifeline increase. Worse than the calls themselves is the nature of so many of them.
One example is the recent case of Tabetha Long, a young woman who experienced cardiac arrest that resulted in an anoxic brain injury. Tabetha’s doctors were optimistic with her initial test results having varying degrees of responsiveness.
Incredibly—and what is still difficult to explain—her mother, who was making her medical treatment decisions, admitted her daughter into hospice where, subsequently, her food and water were stopped. Instead of the chance for rehabilitation, she was denied food and water.
Thankfully, Tabetha’s boyfriend began asking questions, and we were able to identify a supportive attorney for Tabetha who convinced courts to intervene, remove Tabetha from hospice, and restore her food and water. Since then, she has been discharged and is now living at home.
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In many respects, Tabetha’s case is not unique. It underscores the way that politicized language can obscure and mislead, rather than speak to the truth of someone’s situation.
Life-Affirming Care, Threatened by Politicized Language
Phrases like “quality of life,” and “end of life” are often used to justify the stoppage of basic rehabilitation. Often, “end of life” issues are better described simply as “life” issues. The types of patients we assist are often facing what others describe as “end of life” issues, not because they are actively dying, but because someone is actively trying to end their life through denial of care, as we saw in Tabetha’s situation.
Increasingly, that might include patients who are trying to end their own lives, and states that have legalized that, are failing their citizens, evidenced with physician assisted suicide. In 2017, 24 states already have, or plan on proposing, physician-approved suicide. This does not include the six states that presently permit this practice: Colorado, Oregon, Washington, Vermont, Washington DC, and Montana. And Oregon is actively trying to expand its “Death Law,” placing more vulnerable persons, who often require counseling and treatment, at risk of an early death.
The risks of our changing laws and the medical and legal mentalities that these changes encourage are often downplayed by advocates of assisted suicide, denial-of-care, and healthcare rationing. Yet there are lessons from abroad that demonstrate the real, tangible threat to medically vulnerable persons that these changes will cause.
Lessons From Our International Brothers And Sisters
While Americans debate the so-called “right” to death, internationally, many of our Western peers have moved toward a death-on-demand culture where a patient’s situation is considered “end of life” simply based on that patient’s desire to die—often regardless of age or circumstance.
In Canada, laws justifying these practices are largely entrenched. In Europe, particularly in the Netherlands, things are worse.
For example, a Dutch doctor was recently cleared of criminal wrongdoing after she asked the family of an elderly woman with dementia to hold their mother down so she could euthanize her.
It was reported that the patient “fought desperately” to live. This was eventually reviewed by a Netherlands ethics committee that concluded that this physician “acted in good faith.” A daily column could be written exclusively highlighting examples like this, and there would be no lack of subject material.
In America, we haven’t yet reached this point, but for those paying attention, there’s no question where “Death with Dignity” laws will lead.
A Need for Heroic Advocates to Combat Fatal Indifference
The larger theme to the issues the Terri Schiavo Life & Hope Network addresses is that medically vulnerable persons—those people who are disabled or unwell in some way, but not actively dying—always deserve support, treatment, and access to rehabilitation, and any laws that justify death as medicine will eventually lead to many instances of that “medicine” being imposed absent any consent from the patient.
To protect oneself from such situations, Advanced Directives are often held up as a solution. While these documents are important, hospital ethics committees are increasingly empowered to ignore or re-interpret Advanced Directives to suit whatever sort of treatment or non-treatment that a physician might prefer to administer.
What’s far more important is also less tangible: real, trusted relationships with people who are explicitly ready and willing to step forward in a time of crisis to be a heroic advocate for you if you’re not able to speak for yourself.
As we mark the anniversary of my sister’s death, it’s my hope that every American identifies someone they trust as their heroic advocate. There’s no guarantee of success, as my own family’s struggle on behalf of Terri unfortunately demonstrates, but it gives us a practical, fighting chance in the face of fatal indifference.
In the meantime, I’ll continue to advocate in my sister’s name for every medically vulnerable person who needs help.