Ray Moseley sees the trouble with advance health-care directives every time he speaks to a group of senior citizens: Several in the crowd always know someone who had a living will but whose end-of-life decisions were not honored anyway.
Ambiguity, objections and even fear cause families and physicians to ignore the decisions listed in advance directives more often than most people think, violating a patient’s right to refuse treatment, says Moseley, a University of Florida bioethicist. But he and two other researchers have envisioned an idea that could make end-of-life decisions easier to decipher.
Videotaping an advance directive, the researchers explain in an article recently published online in the Archives of Geriatrics and Gerontology, would allow people to express medical decisions to their physicians and families in a way legal documents do not allow - face to face.
"Studies have shown that advance directives, in spite of the idea that we should honor an incapacitated person’s wishes, just simply don’t work very well," Moseley said. "There’s this growing frustration out there that written advanced directives aren’t working and there don’t seem to be any alternatives. We’re offering an alternative."
Moseley said the problem isn’t the message of advance directives, which have been used for about 30 years and allow people to plan ahead for their health care should they become seriously ill. Advance planning can keep people from battling about end-of-life decisions in court, like the family of Terri Schiavo, a Florida woman in a persistent vegetative state whose husband and parents fought for years about whether her feeding tube should be removed.
But a written advance directive doesn’t always stop the bickering among families, Moseley said. Seeing a relative explain his or her decision in a video could quell some of the discord, the researchers suggest. A videotape could spur discussions at home about death, too.
"None of us like talking about end-of-life issues," he said. "We are a death-denying culture. But that’s only one little part of (the problem). The big part of it is the medium."
A written advance directive often raises more questions for doctors than the document answers. Physicians don’t always know if their patients were coherent when they signed the form or what they meant by certain terms like "terminal." And many physicians in hospitals are caring for incapacitated patients they’ve never met before, let alone when they were healthier and still coherent. This confusion about a life-or-death issue can force doctors to make conservative treatment choices, ones that may not coincide with what a patient expressed in an advance directive, Moseley said.
"Some of the most difficult situations - difficult for families, patients and physicians - revolve around advance directives," said Dr. Robert Hatch, a UF associate professor of medical education who contributed to the report along with another researcher from the University of California at Los Angeles. Hatch said a doctor with a full hospital schedule probably faces an advance directive problem every other month. Most doctors are uncomfortable relying on a legal document to determine whether a patient lives or dies, said Kenneth Goodman, a University of Miami bioethics professor and the director of the Florida Bioethics Network.
But with technological and medical advances keeping patients alive longer than they did 50 years ago, advance directives are becoming increasingly important, he said.
"Advance directives are a very important way to let your wishes be known," he said. "(Video) is a very creative way of demonstrating what you want. I think it’s a good idea."
The researchers don’t think the written form of advance directives should be scrapped though. They see video as a supplement. While many states would accept a video, some states require an advance directive be signed to be legally binding. In Florida, an advance directive does not have to be written but must be witnessed to be legal.
Moseley notes that video living wills may not solve every problem. He said he thinks the idea needs to be studied further and people need to learn to accept others’ wishes so a patient’s rights are never violated. But for most families and doctors, Moseley said video is one step closer toward a conversation and potentially, one step closer toward acceptance.
"Our goal should be to honor a patient’s wishes as best we can, and a video living will would significantly help," he said.