Erring on the Side of Theresa Schiavo: Reflections of the Special Guardian ad Litem

For Theresa Marie Schiavo, good science, good medicine, and the careful application of the law were not enough. Her loving parents begged the world to save the life of their brain-damaged daughter, while her devoted husband sought removal of a feeding tube to fulfill what he believed were his wife's wishes not to be maintained in a diagnosed vegetative state. As the whole world watched, legal and political armamentaria were mightily assembled and deployed. The life and death conflict ended Easter week, 2005--some asserted from painful starvation and dehydration, others said from a peaceful, natural shutting down of her systems. In October 2003, I was appointed Ms. Schiavo's guardian ad litem and was afforded thirty days to complete a report to the courts and the governor of Florida. I was charged with preparing a comprehensive medical and legal summary of her care and with making recommendations about the feasibility of conducting additional swallowing tests, which the governor of Florida considered a benchmark for assessing her condition. During that time I met with Theresa, her parents, siblings, husband, hospice staff, attorneys, and the governor, and engaged the nearly fourteen years and thirty thousand pages of legal and medical records in her case. My goal was to maintain balance and seek to represent exclusively Theresa's interests. To do this, acquiring the trust and active input of all parties was essential. There had never been a permanent guardian ad litem appointed for Theresa, even though the dispute over her guardianship had lasted more than a decade. Theresa suffered a cardiac arrest in February of 1990, possibly because of an eating disorder that may have caused the profound electrolyte imbalance diagnosed upon her admission to the hospital. Over the course of more than six previous years, she had dropped from nearly 250 pounds to 110. Subsequent to her arrest, she remained anoxic, or without oxygen, for about eleven minutes, some five to seven minutes longer than most medical experts believe is possible without suffering profound, irreversible brain damage. At the insistence of her husband, Michael, she was intubated, given a tracheotomy so she could breathe, and placed on a respirator. Had Theresa not been resuscitated and placed on a respirator, she would have died, as many do after such an event. But instead, she was caused to live, in a coma for the first two months and then in what was repeatedly diagnosed as a persistent vegetative state (PVS). She was removed from the respirator and able to breathe and swallow her saliva--reflexive behaviors--but she was unable to drink or eat food, which is characteristic of the vegetative state. She was kept functioning with an artificial feeding and hydration tube in her stomach. Throughout this period, there was no challenge to either the diagnosis of PVS or to the appointment of Michael as her guardian. For three and a half years, her husband and parents struggled together to maintain her. Within four years of her cardiac arrest, a long-shot lawsuit against a fertility doctor who had failed to detect her electrolyte imbalance resulted in a judgment of $300,000 to Michael for loss of consortium, and some $700,000 to be placed in a court-managed trust account to maintain and provide care for Theresa. Thereafter, what is for millions of Americans a profoundly private matter catapulted a close, loving family into an internationally watched blood feud. The end product was a most public death for a very private individual. Snippets of Theresa's partially clad body and manifestly disabled state were broadcast everywhere. It was like The Truman Show, the movie of a man whose daily life was watched, unbeknownst to him, by millions of viewers as part of an internationally broadcast television show, except that it was defined by anecdote, stuffed with third party hearsay, and fueled by a naturally voyeuristic media, fabulous amounts of clinical and legal misinformation, political opportunism of unprecedented scope and flavor, and vitriol that poisoned the already imploded family relationships beyond any hope of repair. …