Throughout the early months of 2005, peaking in late March as this is being written, the attention
of the nation has been focused, persistently if not exclusively, on the medico-legal-political and quasi-religious
drama of Terri Schiavo, a 41-year-old woman who, according to the overwhelming consensus of the medical experts who have examined her, has been in a persistent vegetative state (PVS) since 1990, the year she suffered a cardiac arrest. Whether or not the feeding tube surgically implanted in her stomach her only form of life-support should be withdrawn has been the primary issue in the protracted legal battle between her husband, Michael Schiavo, and her parents, Robert and Mary Schindler. Reminiscent of the interminable case of Jarndyce v. Jarndyce in the British High Court of Chancery that, according to Charles Dickens in Bleak House, "became so complicated that no man alive knows what it means," the litigation concerning the withdrawal of artificial nutrition and hydration from Ms. Schiavo has come before at least 20 judges at the time of this writing, not to mention the Florida Supreme Court and the U.S. Supreme Court, both of which declined on multiple occasions to intervene and challenge what the lower state courts had determined.
The litigation, and the media frenzy that has recently attended it, have afforded us two simultaneous manifestations of "March Madness." The Schiavo case forces us to consider, or more accurately from an historical perspective, reconsider, a number of critical questions at the confluence of medicine, law, and bioethics. We will do so in the context of trying to sort out the details of Ms. Schiavo's protracted and convoluted medico-legal saga.
Question: Is there any reasonable doubt about Ms. Schiavo's diagnosis and prognosis?
One of the remarkable and significant aspects of the Schiavo case is that judges and medical experts, over a period of seven years, have established and maintained a strong consensus position that Ms. Schiavo has been in a PVS for most, if not all, of the 15 years since her cardiac arrest. The cause of the PVS was severe hypoxic-ischemic encephalopathy. CT scans of her brain reveal severe atrophy of her cerebral hemispheres, and flat electroencephalograms indicate no functional activity of the cerebral cortex. The most salient feature of a PVS from a lay perspective is the prognosis, which is that the patient has permanently lost the capacity for conscious experience, and hence any possibility for interaction (meaningful or otherwise) with others or with his/her environment. Public opinion surveys prompted by previous high-profile cases involving PVS patients, in particular Karen Quinlan in 1976 and Nancy Cruzan in 1990, as well as more recent ones, consistently reveal that the overwhelming majority of Americans would not wish to have their life sustained in a state of permanent unconsciousness.
At a rehearing of the case in 2002, the Schindlers presented testimony by a neurologist and a radiologist that appeared to challenge, if not the diagnosis of PVS, at least its prognosis of permanent unconsciousness. These witnesses contended that her condition might be improved through the administration of hyperbaric oxygen or vasodilators. Their testimony was not deemed persuasive by the courts because, in part, there was no objective data to support it.
Question: How has this case continued so long if there is such a strong consensus on the medical and legal issues?
The Schindlers have been remarkably successful in enlisting the moral, political, and perhaps the financial support as well, of the socially conservative and politically influential "right to life" groups across the nation. They also found a highly influential and well-positioned advocate in Ms. Shiavo's home state of Florida, i.e., Governor Jeb Bush. When the gastrostomy tube was removed pursuant to court order in October of 2004, the Florida legislature passed (in one day) a new and special statute (dubbed "Terri's Law") that empowered the governor to order the reinstatement of artificial nutrition and hydration in direct opposition to the court order for its removal that had been affirmed by the Florida Court of Appeals and implicitly adopted (by its refusal to review the appeal) by the Florida Supreme Court. The new law was immediately and successfully challenged by Michael Schiavo, but by then artificial nutrition and hydration was again being administered. Governor Bush appealed the decision of the Florida Supreme Court holding that "Terri's Law" was an unconstitutional violation of the separation of powers among the 3 branches of state government to the U.S. Supreme Court, which declined to hear the case. Once again, the feeding tube was ordered removed, and that took place on March 18, 2005.
When the Schindlers were unable to persuade any court to reconsider their case, their supporters began to press the U.S. Congress to intervene. Once again, influential figures in high places rallied to their cause. Bill Frist, the majority leader of the Senate and a cardiac surgeon, viewed videotapes of Ms. Schiavo and offered his opinion that she was not in a PVS. He was joined by a chorus of physicians in the House of Representatives, who did not hesitate to assert, also without ever physically examining Ms. Schiavo, that she retains cognitive ability and should receive the therapy that the Schindlers wish for her. In an unprecedented series of events, some members of Congress returned to Washington from the Easter Recess and late on Sunday night, March 20, 2005, debated and passed a bill with the title "For the relief of the parents of Theresa Marie Schiavo" (S 686). President Bush had already returned from his Texas ranch for the express purpose of being immediately available to sign the bill into law. The gist of the legislation was to direct the U.S. District Court in the Middle District of Florida to entertain a suit "for the alleged violation of any right of Theresa Marie Schiavo under the Constitution or laws of the United States relating to the withholding or withdrawal of food, fluids, or medical treatment necessary to sustain her life."
However, as with "Terri's Law" in Florida, Michael Schiavo was successful in challenging the legislation when the U.S. District Court found after a hearing that the Schindlers had failed to meet the burden of proof imposed under federal law in order to obtain a temporary restraining order that would compel reinstatement of nutrition and hydration. The District Court ruling was affirmed by the U.S. Court of Appeals for the 11th Circuit, and the U.S. Supreme Court once again declined to review the decision.
Question: Are there lessons in the Schiavo case for
patients and their physicians who wish to avoid such disputes?
There is already evidence that the Schiavo case has caused people without written directives to make inquiries about how to prepare them, and to discuss their views with family members. However, advance care planning must be realistic. There is no fail-safe mechanism. Even if Ms. Schiavo had executed a typical Durable Power of Attorney for Healthcare designating her husband as her proxy, it would not have prevented her parents from challenging the appropriateness of his decision to discontinue artificial nutrition and hydration, or the accuracy of the diagnosis of and prognosis for PVS upon which the decision was based. What it might well have done, however, would have been to dissuade politicians at the state or national level from insinuating themselves into the process.
What we know from extensive experience, including the Wendland case in California, is that verbal expressions never reduced to writing are virtually worthless if and when courts get involved. Although it is a hopelessly unrealistically view, courts seem to believe that laypersons think and act like lawyers, i.e., they put anything they are serious about in writing. Based on this professional bias, judges (who after all are lawyers) have demonstrated a propensity to dismiss oral directives as nothing more than "emotional responses to distressing situations," unworthy of directing care in times of grave or terminal illness. Also, despite the fact that the patients in the highest profile cases have been young, apparently healthy women at the time of their initial injury or medical emergency, thus strongly suggesting that young adults should be encouraged to execute directives, courts have tended to discount declarations by such persons that they would not wish their life sustained if they were to become gravely disabled and unable to engage in activities that give meaning to their life. The Catch 22 element of such a posture is that it discourages the healthy patient from providing us with the best available evidence of what they would wish if such a tragedy should some day befall them and they can no longer speak for themselves.
The best advance care planning is done by patients in conjunction with their family and with their personal physician. The most effective advance directive is one that not only designates a proxy, but also reflects the patient's personal values, and that is grounded upon a basic understanding of the general circumstances in which various forms of life-sustaining treatment are provided. Only when we bring advance care planning and the crafting of advance directives into the core of the physician-patient relationship will they have a realistic possibility of fulfilling their potential to be instruments by which we preserve, protect, and defend the patient's recognized right to prospective autonomy.