The issue of end-of-life planning regularly creates emotional debate, as in the case of Terry Schiavo, a brain-damaged Florida resident who died in 2005, and in the current controversy about a U.S. House proposal to pay doctors through Medicare for talks with willing patients about how they want their lives to end.
In North Carolina, the issue was hotly debated in 2007, when the legislature voted after bruising debate to revise end-of-life forms to provide more detailed choices for people planning ahead.
Since then, according to state records, thousands of people have made the decision to spell out advance choices about how they should be treated as their final days near. Nursing homes, hospitals, hospices and other institutions have asked the state for more than 390,000 end-of-life forms.
And about a dozen people each business day add their advance health-care choices in the form of documents that spell out what kinds of end-of-life care they want under specific conditions. Those are added to a separate online database of about 15,000 maintained by the office of Secretary of State Elaine Marshall. Total annual filings to the Advance Health Care Directive Registry are up nearly 50 percent during the last five years, state records show.
"People need to know, and tell their family, what their wishes are because there may be a time when they aren't able to do that," Marshall said Thursday. "The divisions in a family that surround somebody's medical condition frequently are irreparable. Somebody will say, 'Mama said she didn't want to be kept alive this way,' and somebody else says, 'I never heard her say that.'"
Issue for families
This charged issue has gained such presence in the health-care debate that President Barack Obama had to repudiate claims last week that health-care reform would create "death panels" to pass judgment, based on age and infirmity, on who should live. Provisions for end-of-life consultations may be dropped by the U.S. Senate, while it remains in a pending version of the House health reform package.
But beyond the politics, the issue touches many families and can be more subtle, involving the deference that patients typically feel toward their doctors, said Barry Bostrom, an Indiana lawyer who edits the academic journal Issues in Law & Medicine.
"The problem is that everybody reveres their doctor," Bostrom said. "If the doctor suggests that it's time to take a cocktail pill or something, because of the esteem that people have for doctors, that could be devastating.
"To answer questions and discuss it, fine, but if the doctor starts making suggestions, that could be undue influence and the patient could end his life prematurely."
Two state forms -- DNR ("do not resuscitate") and MOST (medical order for scope of treatment) -- were designed to allow people to detail in advance how they want to be treated under various end-of-life scenarios. The 2007 legislation created the MOST form and made changes to North Carolina's health-care power of attorney law, designed to give a trusted person advance authority to make someone's health-care decisions.
Opponents said such documents would tend by their nature to encourage people to decide to forgo life-sustaining treatment.
Multiple hearings and votes on the bills were marked by emotional testimony and predictions of state-encouraged euthanasia. State Rep. Paul Stam, an Apex Republican, opposed the revised documents created by the 2007 legislation, but doesn't know whether they have resulted in older people being nudged in the direction of forgoing end-of-life care.
"I don't know that there's any way anybody would know," said Stam, who thinks the law is too vague and difficult to understand. "We believe in honoring people's wishes about treatment, but the form itself is weighted to nontreatment."
Doug Wickham, a Raleigh lawyer who works with LifeTree, a pro-life research and advocacy group, said he sees parallels between the North Carolina legislative wrangle and the current national debate over access to health care.
"These forms will likely make it easier for those who make rationing sorts of health-care decisions to carry out what they wish to do," Wickham said.
Figures from the state Office of Emergency Management Services, which produces and distributes the DNR and MOST forms, show that hospitals, nursing homes and home health agencies are among the groups requesting the largest numbers of forms. Although the orders from institutions don't necessarily mean each document is being filled out, repeat orders show that they are seeing plenty of use, state officials said.
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