Published Sunday
July 30, 2006

Petition's full impact a surprise to signers

BY NICHOLE AKSAMIT
WORLD-HERALD STAFF WRITER


More than 137,000 people signed petitions this summer to put a "humane care" measure on the fall ballot in Nebraska.

They may have thought they were helping people in the same condition as Terri Schiavo, the brain-injured Florida woman who died last year after her feeding tube was disconnected.

But if the signatures are certified in August and voters approve the measure in November, the resulting amendment to the Nebraska Constitution could force families in numerous other situations to surrender medical decisions about loved ones to strangers and the courts.

The ballot measure would require caregivers to provide anyone in their care with food and water - by mouth, intravenous tube, feeding tube or other means - unless the person already has an advance directive that allows otherwise.

It includes no explicit exceptions for parents of minor children. Or Alzheimer's patients. Or people who have had strokes, car accidents and aneurysms. Or anyone who never had or is suddenly without the mental capacity to draft an advance directive. There would be no exceptions for medical situations in which providing food and water might cause a patient discomfort or harm.

And though the measure would leave families out of decisions to withdraw care, it expressly allows outside observers to file lawsuits to force food and water to be provided - regardless of a patient's comfort or medical state.

Thomas Mann, the Omaha attorney who heads the committee that filed the petitions, said Friday that he doesn't feel the measure is overly broad.

"It's a basic human rights issue," he said.

But two Omaha medical ethicists, one of whom is also a lawyer, and some local hospice providers said they worry that voters moved by Schiavo's story may approve the measure without realizing its potential effects.

"While we understand what it's intended to do, we have concerns that it goes far beyond that," said Jonathan Krutz, executive director of the Nebraska Hospice and Palliative Care Partnership. "It looks to require tube feeding in all sorts of situations that aren't medically appropriate."

Rebecca Anderson - lawyer, genetic counselor and medical ethicist at the University of Nebraska Medical Center - said she suspects that most people who signed the petition didn't read it or contemplate its reaches.

"What I don't know," she said, "is if we can educate the state enough to turn it down."

Several Omaha-area hospice providers will meet this week to discuss the measure's implications.

Nebraskans United for Life, a right-to-life group that claims 28,000 households as members, backs the measure and is planning a fall mailing to push it.

Others in the state's right-to-life community have concerns about the amendment and its sudden sprouting in Nebraska.

"We're not a part of it at this point," said Greg Schleppenbach, director of the Nebraska Catholic Conference's Pro Life Office.

Schleppenbach said the conference sympathizes with the amendment's underlying concern: the potential for unethical withdrawals of nutrition and hydration.

"But we also recognize this is a complex issue - medically, legally, ethically and morally - for people," he said. "At the next meeting of Catholic bishops, we'll discuss that."

Schleppenbach said the conference had no input on drafting the petition language, though organizers have asked him for support.

"Unfortunately, this petition came to us at a point where there was nothing that could be done to change the language," Schleppenbach said. "And as far as I know, nobody in Nebraska had any input on the language or its potential effects until it had already been submitted to the secretary of state."

Nebraskans United for Life, based in Omaha, also was not involved in drafting the measure, said Ann Marie Bowen, the group's chairwoman and president.

Nebraska Right to Life, a statewide group based in Lincoln, did not return phone calls.

Mann said out-of-state authors - including a law professor who was raised in Omaha - drafted the amendment. He declined to identify any in-state contributors, but said: "There was input from Nebraska."

Mann's organization, Nebraskans for Humane Care Committee, has so far been funded entirely by out-of-state interests - $605,000 from a group with Montana, Idaho and Illinois ties.

Earlier this month, the committee filed 137,200 signatures - about 23,000 more than needed - to put the measure on the Nov. 7 ballot. Counties have until late August to certify the signatures as valid.

In the meantime, local hospice and ethics leaders are trying to understand the implications of an amendment many didn't see coming.

"One of the downsides of the petition process is it really doesn't give as much opportunity for full debate as a process that goes through the Legislature," said Eric Evans, who oversees public policy for Nebraska Advocacy Services.

The Lincoln public interest law firm, which specializes in disability issues, wasn't aware of the petition drive until the signatures were turned in early this month. "(An amendment like this) can quickly become part of the constitution without an opportunity to have vigorous public debate on it."

Amy Haddad, director of the Center for Health Policy and Ethics at Creighton University Medical Center, took issue with the amendment in a guest column on The World-Herald's opinion page a few weeks ago. Since then, she said, people have called asking how to get their names off the petition and how to make an advance directive.

An estimated 10 percent to 30 percent of the population nationally have advance directives.

Haddad, Anderson, and Krutz discussed some people and situations they fear the "humane care" measure would affect:

• Medical situations in which food or water may be harmful.

The amendment says the feeding rule applies if a person "reasonably" would die or suffer grave physical harm if he didn't get food and water, and if he can "metabolize." It doesn't define those terms. And it doesn't make any distinction between people with a chance of recovery and those on their deathbeds.

"You're capable of metabolizing food and water even if you are dying," Haddad said. "But people in the end stages of life naturally quit eating and drinking. The more food and fluids you have in your system, the harder it is to breathe, the more output you have to deal with."

Krutz noted that many people who choose to spend their final days at home could be forced into a hospital for IV or tube feeding. And some patients might be too frail to withstand the insertion of a feeding tube, catheter or IV, Haddad said.

• Children with grave health conditions.

Children under age 19 generally can't have advance directives in Nebraska. Currently, their health-care decisions are left to their parents or legal guardians.

Under the amendment, parents would be unable to refuse or discontinue feeding or hydration tubes, even if it was in the child's medical best interest, Anderson said.

That troubles Lynne Trease - the mother of the hydranencephalitic Clearwater, Neb., girl featured in The World-Herald last week. She doesn't regret starting her daughter on a feeding tube. But she said that may not be the right decision for a dying child or another family.

"I think it's still an individual decision," she said. "No government knows your child or your family member as well as you do."

Bowen, of Nebraskans United for Life, defended the amendment's application to children.

"I don't know why we would want to give parents the right to starve and dehydrate their children to death," she said. "It is the right of the state to protect its citizens."

• Families of people who lack mental capacity to draft an advance directive. Currently, families and doctors decide what's best for an adult child with severe mental retardation, a grandparent with Alzheimer's or a person with a sudden and severe brain injury who never had a chance to make an advance directive.

"If this amendment goes through, essentially we're going to have these people on artificial feeds until they die," Anderson said. "They can no longer talk for themselves."

Mann didn't answer questions about the amendment's application in those situations.