Now that he has finally officially declared his candidacy, Jeb Bush's (R) flouting of election law by campaign fundraising prior to making it official is only another in his long history of ethical and constitutional violations. The former governor of Florida is associated, in my areas of medical specialization in artificial feeding and medical ethics, with one the most defining cases and greatest executive overreaches of our time. His dictatorial actions — pushing legislation and using executive powers to strip Terri Schiavo of her civil rights — belie a different character than that of the more reasonable and moderate Bush that we are hearing about. What does this say about the kind of president he might be?
Terri Schiavo made national news when her husband, Michael Schiavo, sought to have her feeding tube removed so she could be allowed to die. His request came eight years after she had suffered a cardiac arrest that left her in a persistent vegetative state with an estimated 80 percent of her brain lost. Michael Schiavo's request was supported by his, and others, recalling Terri saying that she would not want to be kept alive by artificial means or with tubes. Her mental state, according to her husband and doctors, had not improved despite years of aggressive rehabilitation. After hearing testimony about her prior statements from Michael, and related testimony from nearly 20 others, the court concurred that her condition was permanent, agreed that she had made statements consistent with a desire that she not be kept alive "attached to machines," appointed her husband as her surrogate and approved the removal of the tube.
Her parents, Robert and Mary Schindler, objected to the court's decision and appealed. Understandably, they were extremely concerned about their daughter and were desperate that she not be allowed to die. They fervently believed that Terri shared in their devout religious beliefs that would preclude taking action that would result in her death, and challenged Michael's statements. Moreover, they were certain that they had witnessed Terri responding to them and refused to give up on the possibility of her recovering, no matter the medical prognostications.
The tube was reinserted, and a years-long legal battle ensued that involved 14 appeals, five federal lawsuits and numerous motions and petitions, including a brief written by Bush in support of the Schindlers' efforts to prevent the removal of the tube. After all appeals had been exhausted, Bush pushed through emergency Florida state legislation giving him extraordinary powers over Terri Schiavo's body. Bush used these powers to demand the reinsertion of her feeding tube, despite her statements as transmitted through her husband and accepted by the courts that she would not want to be maintained in this state.
We apply our beliefs to the care of people facing illness and death in countless ways. For some, life as defined by the beating of the heart and is considered worth saving with any and all measures, irrespective of the person's overall condition or mental function. Moreover, prolongation of life is paramount and the withdrawal of life support, including artificial feeding, may result in such severe consequences as the loss or damnation of the soul. At the other extreme, the quality of life — for example, living independently — is paramount, and the idea of being kept alive through artificial means abhorrent and unacceptable.
As physicians and medical ethicists, we deal with these agonizing decisions every day, especially as they pertain to artificial nourishment. But the conflict of beliefs in the case of Terri Schiavo is not what is at issue. Rather, it is Bush's depriving Schiavo of her rights to decide this for herself or through a surrogate.
Autonomy, or the right to self-determination, guarantees that a person has the right to choose what is done medically to his or her body. It is protected by the U.S. Constitution, medical ethics and state laws, which protect persons from the state or other interested parties interfering with that right. Autonomy is the most important concept, and trumps all others, in medical ethics. By ignoring Terri Schiavo's statements, Bush denied her the right to refuse life-prolonging treatment, a right guaranteed by the 14th Amendment and confirmed by the U.S. Supreme Court in 1990.
When a person is unable, due to illness or mental dysfunction, to make or communicate these determinations, a surrogate may be appointed to protect the person's autonomy and represent the person's desires. The surrogate must put all of his or her own biases aside, and make decisions on behalf of the patient based on what the person told them, or what the surrogate believes would be the patient's wishes, whether or not these decisions are in agreement with the surrogate's ethical, moral or religious beliefs, or whether they believe them to be in the patient's best interests.
Both the Florida state law Bush pushed through the legislature that stripped Terri Schiavo's court-appointed surrogate — her husband — of his ability to represent her interests and gave it to Bush, and Bush's executive order forcing the reinsertion of the feeding tube, were deemed unconstitutional by a unanimous Florida Supreme Court. This should have been no surprise. These actions overrode a number of prior court decisions and were a violation of limitations on executive power. Moreover, forced medical therapies have been prohibited, based on multiple legal and ethical decisions. For example, in 1975, the U.S. Supreme court ruled in O'Connor v. Donaldson that medical treatment without consent violated the patient's civil rights. The horrors inflicted by Nazi medical scientists during World War II are among the most abominable examples of such violations.
We can assume that Bush felt that he was acting in Terri Schiavo's best interests, based on his beliefs. But it is also clear that his judgment was clouded by his politics. He acted with a heavy hand, inflicted his beliefs on Schiavo and denied her of her civil rights in the process.
There is debate still ongoing as to whether the experience of someone in a persistent vegetative state such as that of Terri Schiavo is tortuous or painless. There is no question there is disagreement as to what constitutes a life worth saving. But to deny someone of the right to determine this for themselves, even if through a surrogate, is the characteristic of a dictator, not an American president.
Seres, M.D., is associate professor of medicine, a physician specializing in providing artificial feeding, a member of the Ethics Committee at Columbia University Medical Center and a Public Voices Fellow of the Columbia OpEd Project. Follow him on Twitter @davidseres1.