September 4, 2001
By JOHN A. CUTTER
Despite substantial bleeding in his brain, Sam J. Caldrone did not die swiftly. Mr. Caldrone, 83, a retired construction foreman from Pittsburgh, lingered in a coma for almost five weeks after his stroke on Dec. 12, maintained by a ventilator and a feeding tube while his family struggled with the limited possibilities of his future.
"The minute I put my signature on the document to put my father on life support, I was questioning it," said Marilyn Schwilm, 45, who is a bartender in Pittsburgh. "Was it the right decision? Was it what Dad would want? We weren't equipped to make those decisions, and the doctors, as good as they were, didn't help us make them."
Such struggles have spawned widespread interest in the quest for a "good death," where the physical, emotional and spiritual needs of the patient and the family are met with skill and sensitivity. Families may turn to a number of sources of help at times like these. And now they can even turn to their computers.
That may seem a cold medium for this most personal of moments in life, but businesses, hospitals and universities say that by adapting computer technology from video games and market analysis, they can help people navigate the tangled landscape of making end-of-life decisions.
Ms. Schwilm used a computer program called LifePath, which walks users through the same kind of decision-making process that business executives use. A similar resource is a CD-ROM called Completing a Life and a Web site, www.completingalife.msu.edu, created by a university and a hospital, both in Michigan.
And Internet companies, communities and health care providers are using computers to ensure instant access to documents like living wills and medical directives, which patients can use to specify the treatments they want to prolong life and those they do not want.
"People are embracing new technology — they are getting used to the Internet and turning to the computer for health information," said Dr. Leslie J. Bricker, an oncologist and palliative medicine specialist at the Henry Ford Health System in Detroit, who helped develop Completing a Life with researchers at Michigan State University.
LifePath, created by Aliah Inc., a Pittsburgh company, guides users as they rank the things that are most important to them in thinking about their deaths or the deaths of family members.
Advocates for better end-of-life care see great potential in such programs. "It is a highly personalized and inherently relevant way for people to learn about end-of-life decisions because computers and CD- ROM's allow them to go where they are interested, and they can be used in the privacy of the home," said Dr. Ira Byock, director of Promoting Excellence in End-of- Life Care (www.promotingexcellence.org), a $12 million project financed by the Robert Wood Johnson Foundation. The project, based in Missoula, Mont., awards grants to organizations that improve the quality of care for the dying.
In addition to developing the Completing a Life CD-ROM, Dr. Bricker created quick computer access to doctors' notes and end- of-life documents from patients' medical files at the Henry Ford Health System, which has more than 20 centers. The goal is to help doctors avoid performing unnecessary procedures to prolong life because they are not aware of patients' wishes.
Henry Ford is ahead of many other hospitals in using computers to allow access to end-of-life documents, said Dr. Byock, the former president of the American Academy of Hospice and Palliative Medicine and the author of "Dying Well: The Prospect for Growth at the End of Life" (www.dyingwell .com).
"Most surveys say only 25 percent of Americans have a living will or advance medical directive," Dr. Byock said. "And the health care system is notoriously unsuccessful at tracking them and getting them to where they need to be. Computers can make that easier."
Advocates for better end-of-life care hope that programs like LifePath and CD-ROM's like "Completing a Life" will make more people aware of the need to plan for their medical, personal and financial needs.
But computer programs alone are not enough, Dr. Byock said, adding, "It is a tool to be used with other tools, like discussions between doctor and patient and written material."
Will the computer technology help people make better decisions? Researchers are not sure because they know that patients are often confused by complex situations like end-of-life care.
"We just don't know if these kinds of materials help people make better choices," said Dr. Steven Woloshin, a researcher at the Veterans Affairs Medical Center in White River Junction, Vt., who studies ways to improve medical communication.
The choices available when someone is dying can be hard to distill into clear alternatives that fit well into a computer program, said Dr. Joanne Lynn, a geriatrician and the director of the Center to Improve Care of the Dying at Rand Health, a research institute in Arlington, Va.
"There is an array of decisions between two choices, such as saying yes or no to a hospice," Dr. Lynn said. "This makes it more difficult than such decision-making material can make it seem."
Still, Dr. Lynn and others agree that anything that encourages Americans to talk more openly about death and end-of-life care can be a benefit.
In Sam Caldrone's case, Ms. Schwilm said she and her sister, JoAnna Jones, 51, tried LifePath for help "in deciding what Dad would want if he could tell us."
LifePath gave her and her sister a way to discuss what was at stake more easily, Ms. Schwilm said. The family finally decided to remove life support, and Mr. Caldrone died on Jan. 14.
"It was still hard," Ms. Schwilm
said. "It was still like I was killing my father, but the process and the
computer program helped put it in a light you can live with."
Copyright 2001 The New York Times
Copyright 2001 The New York Times Company