by Craig Klugman, Ph.D.
Today acknowledges the tenth anniversary since the final death of Terri Schiavo. Her feeding tube was removed on March 18 and her body took its last breath on March 31, 2005.
This case was one of the most divisive in bioethics history. The issues in this case of removing feeding tubes and deciding who was the appropriate decision-maker had been largely settled by previous cases and experiences. What made this case unique was that a private family matter was thrust onto the international stage by political and money interests who saw an opportunity to further their own agendas at the cost of a family’s privacy and dignity. Politicians passed laws, made speeches, and overreached their constitutional powers to gain the limelight.
In the decade since her death, much has changed in the end-of-life landscape:
- Physician-assisted suicide (now often called doctor-assisted-suicide) is legal in three U.S. states (Oregon, Washington, and Vermont) and is not illegal in two others (Montana and New Mexico). The Canadian Supreme Court laid the groundwork for legalized assisted suicide in that nation. Brittany Maynard moved to Oregon. Suffering from terminal brain cancer, she took her life under the Death with Dignity act.
- Then-Governor of Florida Jeb Bush—who signed Terri’s law and tried to overrule the courts and Terri’s legal guardian—is a 2016 GOP Presidential candidate.
- Terri’s family created a foundation in her name, The Terri Schiavo Life & Hope Network. Its goal is to “develop a national network of resources and support for medically-dependent, persons with disabilities and the incapacitated who are in or potentially facing life-threatening situations.” They have been involved with the Jahi McMath case, overseeing moving Jahi’s body from California to a facility in New Jersey. The Network also gave the McMath family an award for their efforts. Jahi was declared brain death on December 12, 2013. A death certificate was awarded on January 3, 2014. The family is maintaining Jahi’s body and has sued to have her death declaration overturned.
- The POLST movement has swept across the country in the last ten years. POLST provides a patient-centered document that states surrogate decision-makers, DNR desires, and end-of-life wishes in a short document that stays with the patient. All but five states have a POLST program enacted or in development.
- Marlese Muñoz in Texas died from a pulmonary embolism. But because she was pregnant her family was forbidden from doing what she would have wanted and what they wanted—to remove the life support that kept her body functioning. Instead, Muñoz was maintained as an incubator for a fetus, that it turns out was not viable.
- The Institute of Medicine released “Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life” (2014). This report called for better quality and integrative care, increased communication, reconfigured funding priorities, and improved public education.
- Attempts to have health insurance pay physicians to hold conversations with their patients was stonewalled by the “death panels” claims.
- A national model, Respecting Choices by Gunderson Health in Wisconsin has moved the focus from advance directive documents to advance care planning conversations.
Ten years after Terri Schiavo died, the landscape of death and dying has become more progressive and more conservative. The divide on what death can and should be has only grown. The legacy of Terri Schiavo is that dying is more political than ever.
The lesson I take from this case is that dying is a personal and a medical issue. There is no role for politicians in this matter. A family’s grief should not become a plank in a campaign platform.
Even Terri’s burial was a point of contention between her husband and her parents. Michael Schiavo secretly interred her remains to avoid another drawn out legal battle. Her tombstone reads:
Born December 3, 1963
Departed this Earth
February 25, 1990
At Peace March 31, 2005
I Kept My Promise
Rest in peace Terri. May we all keep our promises.