Some people say that how a person is conceived, born and dies should be a personal choice, not a legal ordeal. But in a society governed by law, perhaps it is inevitable that rules and regulations will touch everything and everywhere, including the deathbed.
Terri Schiavo’s much-publicized death last month made that clear. It wasn’t a question of whether the government had a role in how and when the Florida woman should die. The question boiled down to which level of government — state or federal — had the final say.
In the end, state law prevailed, but it took 17 Florida state judges agreeing with Terri Schiavo’s husband before the saga was allowed to reach its denouement.
Most states, including California, have no shortage of laws pertaining to end-of-life issues. All those bills, pending and proposed, preceded the recent flurry of legal action in the Schiavo case. But a national media blitz is more effective than proposed legislation at focusing people’s attention.
“I don’t know if lightning rod is the right term, but the Schiavo case has certainly brought a lot of attention to end-of-life issues,” Judy Citko, executive director of California Coalition for Compassionate Care, said.
The coalition, a partnership of more than 50 regional and statewide organizations dedicated to the advancement of palliative medicine and end-of-life care in California, reports a surge in interest over the past month. During March, the coalition’s Web site logged 53,000 hits, most of them in the latter half of the month when media coverage of the Schiavo case peaked.
“We usually don’t get that many [hits] in six months,” Citko said. “And our advance directives page had more than 7,000 downloads in the same period. That’s unprecedented. The Schiavo case really seems to have resonated with people,” she added.
Brain-damaged and unable to care or communicate for herself after a heart attack in 1990, Terri Schiavo was kept alive with a feeding tube for almost 16 years in a Florida hospital with the hope she could make even a little progress toward recovery. She didn’t. Finally, her husband said his wife wouldn’t want to live that way any longer and asked to have the feeding tube removed. Schiavo’s parents disagreed, and lawyers for both sides jumped from courtroom to courtroom, even to Congress, where many former lawyers weighed in on the issue.
The issue wasn’t so much which laws applied. The debate in Schiavo’s case revolved around what the patient herself wanted. Because Schiavo, like other publicized cases, had not made clear her desires about quality of life or whether she wanted to be kept alive artificially, family, lawyers and judges had to decide for her.
The legal and political grandstanding ended in mid-March, when a federal court refused to hear the case. The feeding tube was removed, and Schiavo died 13 days later.
Schiavo’s case isn’t the first to draw attention to advance directives and end-of-life questions. Karen Ann Quinlan and Nancy Cruzan had a lot to do with state and federal legislation regarding end-of-life issues.
Karen Ann Quinlan was the first modern example of the end-of-life debate. Quinlan in 1975 collapsed at age 21 after swallowing alcohol and a tranquilizer. Doctors resuscitated her, but she suffered brain damage and lapsed into a “persistent vegetative state.”
Her family won a much-publicized legal battle for the right to remove her from life support. After her respirator was disconnected, Quinlan kept breathing on her own and remained in a coma in a New Jersey nursing home for almost 10 years until she died in 1985.
Nancy Cruzan became a public figure after a 1983 auto accident left her permanently unconscious and without any higher-level brain function. Like Schiavo, she was kept alive only by a feeding tube and daily medical care.
Cruzan’s family began a legal battle to have her feeding tube removed; the case went to the U.S. Supreme Court, which ruled that the Cruzans had not provided “clear and convincing evidence” that their daughter would not wish to persist on life support. In 1990, the Cruzans presented new evidence to the Missouri courts, which eventually ruled in their favor. Nancy Cruzan’s feeding tube was removed in December, and she died later that month.
Because of Quinlan, Cruzan and similar cases, most states, including California, have laws granting an individual the right to determine his or her level of care or quality of life.
The key is that Californians must express their desires before some event takes away their ability to do so. An expression of this desire is commonly referred to as an advance directive, which can be documents outlining one’s wishes or the designation of a family member or friend to make health care decisions on the individual’s behalf.
In California, no fewer than seven end-of-life bills are pending in the Legislature. They address issues ranging from hospice care to advance directives for terminally ill and incapacitated patients. In the past four years, two dozen bills have been introduced in California dealing with end-of-life issues.
One bill (AB 1676), written by Assembly members Joe Nation (D-San Rafael) and Keith Richman (R-Granada Hills), would direct the Department of Motor Vehicles to act as information conduit for advance directives by disseminating information in mailings and at DMV offices and by establishing an advance-directive registry that would be linked electronically with hospitals and medical providers.
“It’s a very simple bill, and it’s pretty clear that some kind of clearinghouse is needed,” Nation said. He added, “There needs to be some organization to make advance directives part of our health care system.
“Most everybody has a personal story that deals with this issue. I know I do,” Nation, referring to his father’s death seven years ago from a degenerative neurological condition, said.
“There’s clearly an inertia in our health care system to keep the patient alive at all costs, all the time,” Nation said. But he added, “That may not always be the best course. That’s what this [bill] is all about.”
The California Coalition for Compassionate Care, as well as many legislators, lawyers and health care professionals believe the best way to avoid hospital room debates is for individuals to talk with family and loved ones before the need arises.
“Conversations with the people who matter in your life are the best answer,” Citko advised. “Your family, your loved ones, your doctor and lawyer. It’s a good thing to execute a document as well, designating someone else as the decision maker if you should be unable to decide yourself. And you can also say in your advance directive who you don’t want to be deciding things for you. That can be just as important,” Citko added.
“That’s really the most important thing to do,” Citko stressed. She said, “Documents can’t cover all the possibilities, and nobody can foresee what might happen, but discussing philosophies about what quality of life you find acceptable can make things pretty clear.”