While their children hunted Easter eggs, Lori and Paul Camacho discussed death. And over their holiday dinner of fried chicken and potato salad, the Morgan Hill family and their relatives pointed to Terri Schiavo, the severely brain-damaged woman whose case has sparked a nationwide debate over end-of-life care. "I wouldn't want to live like that,'' some of them reasoned. But defining what "that'' is, many Americans are realizing, isn't all that easy.
As families rush to craft directives that would guide their care in the event they can no longer decide for themselves, they're struggling to find the right combination of legal language and common sense to avoid Schiavo's plight. The Florida woman enters her 14th day without food or water today after her parents were turned down by a federal appeals court and the U.S. Supreme Court in efforts to have her feeding tube restored. Schiavo left no written orders on how to decide her fate.
Now, thousands of Americans are filling out the legal forms that she did not and getting them witnessed and notarized. They're discussing what makes a life worth living: the ability to think? To breathe? To communicate? But in the end, experts say, what may matter even more than these increasingly ubiquitous forms is deciding -- now -- whom you trust to make those decisions as you lie helpless, and talking with them about what kind of treatment you consider necessary and what you consider futile.
Those conversations make all the difference later. "The family says, `Oh, look, we've got a living will,' '' said David Magnus, director of the Stanford Center for Biomedical Ethics. "But it doesn't really tell you what to do.'' No one in the family has had a conversation the clarifies their wishes. "That happens all the time,'' Magnus said.
The forms themselves are daunting and may scare some people away from talking about things they need to. "Some people worry if they fill one of these out, they are choosing to have their life ended,'' said Peter Warren, a spokesman for the California Medical Association. "You can choose just the opposite. You can say, `In every circumstance, keep me alive.' ''
The danger is in waiting too long to fill out a directive, because you never know when you might need it, experts said. "Not doing it leaves you in limbo, and leaves your family in limbo,'' said Warren. "What did Dad want?'' Even the experts acknowledge the legal documents for Californians are vague, and just ask generally whether state residents would choose to prolong their life or not, and leave a few blank lines for people to add their "other wishes'' and thoughts on pain relief.
As the Schiavo case shows, though, the details are important. The forms do not ask if a person believes in feeding tubes, but is opposed to blood transfusions. Or whether kidney dialysis is fine, but being tethered to a ventilator for the rest of their life is not. Or if they would still want to live if a stroke left them immobile and unable to speak, but still lucid.
The vast majority of critically injured or terminally ill patients will never be in Schiavo's position, lingering in a "persistent vegetative state'' for years, Magnus said. Many will suffer instead from more minor traumas or neurological damage considered ethical "gray'' zones, leaving them with what some consider a life not worth living -- and what others consider still vital.
The forms provide only a sketchy road map. "You can't anticipate every possible medical decision that would need to be made,'' said Dr. Kate Christensen, medical director of a Kaiser Permanente hospice program. "And neither would you want to do that,'' she said, because there is no way to know ahead of time the context of some choices.
Some patients, for example, might spell out that they don't want to be given antibiotics when they are slowly dying because the drugs could prolong their life and pain. But in some cases, antibiotics can comfort the dying. If the infection itself causes discomfort and doesn't hasten death, treating it ends the discomfort.
Picking someone you trust
The important thing, experts say, is selecting a surrogate decision-maker you trust, someone with an open mind, and someone you have repeated conversations with about what medical treatments you might be opposed to and why.
The person needs to know your religious beliefs, your cultural background, your moral upbringing: all the parts of you that would come into play in deciding what is a tolerable life and ideal death. And the surrogate should be dedicated to following your wishes rather than their own. "We don't ask them to decide `What would you want for your mother?' Or `What would you want if you were your mother?' But `If your mother could wake up for 15 minutes and tell us what she would want, what would it be?' '' said Margaret McLean, director of biotechnology and health care ethics at Santa Clara University. "That takes a lot of courage sometimes.''
Lori Camacho, the 31-year-old Morgan Hill mother of three who found herself talking about the subject over Easter supper, said the Schiavo case has spurred her to think about how her own family members might feel if she became mentally incapacitated.
When Camacho and her husband, Paul -- a former security officer for the Air Force -- drafted their own advance health care directives a decade ago, she spelled out that she would not want to be kept alive if she were brain dead. But now, seeing the sorrow of Terri Schiavo's parents, Camacho said she plans to revise that. If either her husband or her parents want to keep her alive, she said, their wishes should be honored. "If we make somebody happy,'' asked Camacho, "why take us out of the world?''
Contact Julie Sevrens Lyons at firstname.lastname@example.org or 408-920-5989.