Absent an advance directive, health proxies often can’t agree among themselves what their loved one would want. “That’s what leads to this mess,” Kottkamp says. “It’s not that we don’t have a decision maker. It’s who is making the decision and in what context.”
Federal law requires hospitals to ask patients whether they have an advance directive, but the question is often simply checked off a list and there is no follow-up.
People’s expectations about end-of-life care are often buoyed by an unrealistic belief in the power of medical advances made in recent decades, says Carol Taylor, who, as director of the Center for Clinical Bioethics at Georgetown University, often counsels family members at the university’s hospital.
Guilt plays a role, so does hope
“Probably the most common consult comes because families of actively dying or end-stage patients are continuing to insist upon resuscitation, the use of ventilators, the use of dialysis—the use of all sorts of stuff that the health care team believes is no longer helpful,” she says.
Guilt-stricken family members “oftentimes think, ‘If we haven’t done everything we possibly can, somehow we’re not loving enough or we’re failing,’” Taylor says. “Hope in a miraculous cure is certainly fueled by the TV, medical dramas and other programs, and by science that says, ‘Give us your dollars, and by golly we’re going to cure you.’”
Thomas, the geriatrician, concurs that health proxies have a tough job, but in the end doctors can help them face the reality that their loved one will die.
“For that man or woman standing there, it’s the first time in their life that their father has lain on their deathbed,” he says. “But if you have a physician there who’s been through the process, it can be very calming, very reassuring to know, ‘We’ll get through this. It’s going to be all right.’ ”
Michael Haederle is a freelance writer whose work has appeared in People, the New York Times and the Los Angeles Times.