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France’s Terri Schiavo

Erik Fribergh and Dean Spielmann on the bench of the European Court of Human Rights.
The European Court of Human Rights hears Vincent Lambert's case, June 5, 2015.
Photo by Claude Truong-Ngoc, via Wikimedia Commons

The tragic case of Vincent Lambert will be achingly familiar to many Americans, who have already seen too many similar controversies.

Lambert, a 42-year-old Frenchman, is lying in a persistent vegetative state at a hospital in his homeland as I write this post. After a 2008 motorcycle accident, Lambert can breathe without assistance but remains in a quadriplegic state of paralysis with minimal if any consciousness. In 2013, Lambert’s wife and his medical team came to the conclusion that care should end. Rachel Lambert says her husband verbally expressed that he would not want to linger indefinitely in a vegetative state. Lambert’s parents and two of his siblings, however, have vehemently opposed removing life support, setting off a protracted legal battle.

Earlier this week, doctors began removing life support for Lambert, in accordance with a ruling from the European Court of Human Rights. This took the form of withdrawing nutrition and hydration, as well as applying sedatives. That same day, however, the Court of Appeal of Paris intervened and ordered support restored. It was, 12 hours after it had ceased. The order was based on a May 3 request from the U.N. Committee on the Rights of Persons with Disabilities to the French government, demanding that the government ensure Lambert remain alive until an investigation into his condition took place. After 11 years, there is no immediate end in sight for Lambert and his family.

Lambert’s fate might have been easily and privately resolved if he had signed an advance medical directive, the document that many Americans refer to as a “living will.” But Europe is startlingly far behind the United States in this area. France did not even have a law establishing advance directives until 2005. Germany passed its legislation in 2009. Italy’s version did not take effect until just last year.

In the U.S., all 50 states have legislation on their books authorizing advance directives. California passed the first such statute in 1976, just as the litigation over a young woman named Karen Ann Quinlan was emerging as a major national story. Most other states followed shortly after.

Quinlan lost consciousness at a party in 1975 after combining alcohol and Valium. The 21-year-old lapsed into a coma, and then into a vegetative state. Quinlan’s parents eventually decided to disconnect her ventilator. (They, like Lambert’s parents, describe themselves as devout Catholics; the couple consulted their priest in making the decision.) Quinlan’s medical team, however, faced threats of prosecution and refused to comply with the parents’ request. The Quinlans went to court, and in 1976, the New Jersey Supreme Court unanimously ruled that they had a right to remove their daughter’s respirator. Karen Ann Quinlan lived nine more years in a nursing home, during which time her parents did not seek to remove her feeding tube.

While Karen Ann Quinlan got national attention, legally her case went no farther than New Jersey. Nancy Cruzan’s case made it to the U.S. Supreme Court in 1990. When Cruzan was 25 years old, a serious car accident left her without any vital signs. Paramedics resuscitated her, but Cruzan never regained consciousness. A few weeks later, doctors declared she was in a persistent vegetative state and inserted a feeding tube. Five years after the accident, Cruzan’s parents asked that the tube be removed; doctors refused to do so without a court order, setting off another protracted legal battle. The Missouri Supreme Court ruled that no one may refuse treatment for another person in the absence of a living will or other compelling evidence of the patient’s wishes. In a 5-4 decision, the U.S. Supreme Court upheld this ruling.

When an advance directive is in place and respected, cases like those of Quinlan, Cruzan and Lambert are almost always avoidable. As a result, advance directives have become standard estate planning instruments in this country. In 2017, Reuters reported on a University of Pennsylvania researcher’s conclusion that more than one-third of adult Americans have such directives in place. This is impressive when you consider that a survey conducted the same year found that fewer than half of U.S. adults had written wills. In contrast, advance directives are still reported to be uncommon in Europe. This is likely to be particularly true for young and healthy adults like Vincent Lambert.

While state laws on advanced directives vary, it is more often a directive’s absence that causes serious problems. When conflict arises, it is usually because an individual has failed to clearly express and document his or her desires about treatment in extreme situations. This opens the door to someone, usually another close relative, credibly challenging a legal representative’s conclusions on the subject. There is no standard template for these end-of-life controversies, except that every case represents a family in agony. The rest of us would do well to remember this.

Compassion and simple human decency demand that we leave these terrible situations in the hands of those closest to the patient, those who are best-informed about the facts, and those in the best position to discern the patient’s prospects and wishes. This includes close family, medical professionals and, when necessary, the courts. It does not include politicians, prosecutors, editorial writers or bloggers like me.

Rachel Lambert, who is her husband’s legal guardian, said it succinctly: “Everyone can have their own opinion and convictions ... but above all, can we now have our privacy.” For a family in pain, outside judgment and speculation can only make things worse.

In the Quinlan and Cruzan cases, the patients’ parents sought to withdraw treatments because they believed there was no hope and no purpose in continuing them. Hospital officials and the government opposed these choices. In the Lambert case, as in its closest widely known American parallel, the Terri Schiavo case, parents wanted to maintain life support while the patient’s spouse sought to end it, consistent with what the spouse asserted were the patient’s privately expressed desires.

The Schiavo case ended in Florida in the mid-2000s following a 15-year legal battle. After Schiavo unexpectedly went into cardiac arrest at age 26, lack of oxygen to her brain caused catastrophic brain damage. Like many people in their mid-20s, Schiavo did not have a living will or other advance directive. The court named her husband, Michael Schiavo, her legal guardian. For the first few years of Schiavo’s care, her husband and her parents worked together to aggressively pursue possible treatments. But eventually Michael Schiavo sought to withdraw life support, as medical professionals admitted no chance for recovery. This set off the years-long legal battle over Schiavo’s fate.

While the courts tried to assess Schiavo’s medical situation and her wishes to the extent they were knowable, politicians sought both moral and political advantage in joining the fray. The Florida Legislature, then-Gov. Jeb Bush and his brother President George W. Bush all sought to intervene in the case through legislation and the courts. An aide to then-Sen. Mel Martinez, a Florida Republican, was fired after admitting that he authored a memo to fellow GOP senators asserting that the case would put Democrats in a bad position and that “the pro-life base will be excited” that Congress was taking up the Schiavo controversy.

That crass exploitation of a family’s grief was reprehensible, if not necessarily representative. Many who opposed Michael Schiavo’s effort to end his wife’s life support were no doubt motivated by sincere beliefs about what they considered to be euthanasia and the sanctity of life. That likely includes the Bush brothers and other politicians on the political right. But 50 states from across the political spectrum have concluded that people have a right to express how they wish to be treated when life is at an end, and that their wishes ought to be respected when life as they have known it is irretrievably lost. Outsiders have no place in determining when this has occurred.

Thankfully, we have a system to deal with the great majority of these situations. It is incumbent on each of us as capable adults to take advantage of it. The suffering we spare is not only, and probably not even primarily, our own. It is an act of kindness toward the people we love the most. If you haven’t documented your wishes about how to be treated when you cannot speak for yourself, right now would be an excellent time to do so.

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