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After Schiavo case, difficult end-of-life questions now asked more often
Tuesday, March 28, 2006

In the year since Terri Schiavo's death, Americans in greater numbers than ever have considered the difficult end-of-life issues they could face someday.

Health care officials and others who focus on death and dying say that in many cases, people learned to spell out their wishes in advance so that no controversy similar to Ms. Schiavo's occurs over what care they would want if they lose the ability to make decisions.

For Linda Urbas, of Chartiers, Washington County, the writing of her living will came in October after watching her husband undergo extensive cancer treatment, including the insertion of a feeding tube, a treatment that she says she would not have wanted for herself, although he did.

Ronald Urbas, 63, died Jan. 16 at home, after weeks of hospice and palliative care, following too many months of painful procedures encouraged by doctors, according to his wife.

"Until you watch what the treatments do to someone you love, you don't know what it's like," said Mrs. Urbas, who remembers her husband calling the Schiavo case "ridiculous."

"I made out my will to say if I'm terminal, I don't want you to restart my heart, I don't want any machines," Mrs. Urbas said.

Politicians, the news media, lawyers and noisy activists on both sides of the debate over end-of-life decision-making were prominent in the weeks before Terri Schiavo's death March 31, 2005. The Florida woman had been brain-damaged for 15 years after a heart attack, and doctors described her as in a "persistent vegetative state." Her parents for years contested her husband's decision to remove her feeding and hydration tube. Her death came two weeks after he won the right in court to have the tube withdrawn.

The Schiavo case is assumed to be one factor in the growth of the number of people who make out instructions for late-life treatment, though it's still far from a majority of adults. The number of people with a living will increased from 12 percent in 1990 to 29 percent among those surveyed in November, according to The Pew Research Center for the People and the Press.

The survey found 70 percent of Americans say there are circumstances when patients should be allowed to die, while 22 percent believe medical professionals should always do everything possible to save a patient.

Such questions are more prominent because of advances in lifesaving medical technology, which increases the potential for patients to be sustained in limbo, unable to speak for themselves.

Sister Diane Matje, Mercy Hospital's palliative care program director, said one patient told her recently that he picked his son to be his surrogate decision-maker if he's incapacitated because "he didn't want to end up like Terri Schiavo." His wife, he said, wouldn't be willing to withhold a feeding tube from him.

There are two forms of advance directives that people are encouraged to fill out upon hospital admissions or at other times: a living will, which describes the type of procedures one is willing to have; and a health care power of attorney, naming the trusted person who should be turned to as a decision-maker, if necessary.

The National Hospice and Palliative Care Organization has a Web site, www.caringinfo.org, at which people can fill out and sign advance directives specific to laws of each state. In the last year, visitors have downloaded more than 1.5 million of the documents, a sign of the public's heightened attention to such matters, even if many others haven't done anything yet, said organization President J. Donald Schumacher.

"You also need to have conversations about this with family members," Mr. Schumacher said. "And until you're in the midst of this kind of issue in a family, there is still a resistance to anyone trying to take on the fact that I may or may not need to decide these things."

A study in France found that family members who were expected to take on end-of-life decision-making for intensive care patients experienced heightened levels of depression and anxiety. Dr. Wendy Evans, a fellow in palliative care at the University of Pittsburgh and UPMC, is beginning a similar study here.

"We don't really know how family members feel, as to whether they want to be involved, and how they want to be involved," she said.

William Colby, a Kansas attorney, said cases like Terri Schiavo's are horrible for the families involved but serve a common good. He represented the family of Nancy Cruzan, whose right-to-die U.S. Supreme Court case in 1990 was the last one before Schiavo to attract such attention. The family battled the state of Missouri for the right to withdraw treatment from the young woman, who was in a vegetative state from an auto accident.

"These cases make the rest of us talk about something we don't really normally talk about," said Mr. Colby, who will give a free public lecture on end-of-life topics at 1 p.m. Sunday in Chatham College's Buhl Hall. "If you start the conversation, it leads to other discussions, and you talk through what you think about medical treatment, when it should be used, what purpose should be served.

"If you have that talk well in advance of an illness, giving the people you love some kind of idea of your attitudes, that's a gift."

Dr. Robert Arnold, chief of UPMC's palliative care program, said physicians are receiving more education than ever on how to talk to family members about such critical issues and how to ease away from prolonged and unnecessary treatment of patients. Such decisions are not always clear-cut, however, increasing the need for family discussions beforehand.

"For most people, cases like Schiavo's are easy because they know what their loved ones would want," Dr. Arnold said. "The tougher cases are ones where it's not clear if someone's going to get better."

The Schiavo case spurred legislative proposals in 11 states that, if enacted, would make it harder to remove feeding tubes from patients like Terri Schiavo, according to Charles Sabatino, an American Bar Association official who also is president of the advocacy group Americans for Better Care of the Dying. Under the proposed statutes, tubes could be withheld from an unconscious or incapable person only if the patient wrote in advance that he or she did not want them used in terminal situations.

Mr. Sabatino called the measures "Schiavo backlash" bills, which he said politicians may be reluctant to pursue.

"The fact that none of these has passed suggests politicians are being circumspect and cautious about where they go with this," he said, since post-Schiavo opinion polls reflected criticism of the government officials who involved themselves in her case.

Pennsylvania has not had such a legislative proposal, but it has a bill pending that could establish priorities for who makes a decision on behalf of an incapacitated person, if no one has been named. It also has a governor's task force nearing completion of a report that will provide recommendations on how the state can expand use of advance directives, hospices, palliative care and other improvements sought by end-of-life specialists.

The report was initially to be completed two months ago, but Pennsylvania Department of Aging Chief of Staff Ivonne Gutierrez-Bucher said the complex issues require more careful writing. The aim is to establish realistic goals for both public programs and private health care providers, and they would have been needed regardless of Terri Schiavo's manner of death, she said.

"It's a culture change issue," Ms. Gutierrez-Bucher said. "It's about educating physicians, educating consumers and educating caregivers about alternatives for dying, about making sure people's choices are respected and assuring family members get the information they need."

First published on March 28, 2006 at 12:00 am
Gary Rotstein can be reached at grotstein@post-gazette.com or 412-263-1255.
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