WASHINGTON (Reuters) - A terminal leukemia patient must have daily blood transfusions or die. A family begs doctors to do everything possible to keep their elderly mother alive. Parents cannot accept their newborn baby will not survive.
End-of-life issues top the list of ethical dilemmas hospitals face as medical progress enables doctors to extend an endangered life to the hard-to-determine point where they may actually only be dragging out death.
Private dramas like these play out in hospitals every day, rarely hitting the headlines as did the family feud over ending life support for Terri Schiavo in the United States in 2005 or a British couple’s fight to save their severely handicapped baby Charlotte Wyatt in 2003 when doctors wanted to give up on her.
These patients used to just die naturally, but now it might be doctors, hospital ethics committees or courts that decide if and when to let them. The more science discovers, especially about the brain, the harder it can get to make that decision.
“The ability of medicine to keep people alive for such long periods of time -- despite their best efforts to die -- has changed the way people perceive the end of life,” said Susan desJardins, a pediatric cardiologist and member of the ethics committee at Arnold Palmer Hospital in Orlando, Florida.
“We have to ask when to provide care, when to stop care, when care is futile,” she said during a recent bioethics course for health care professionals at Georgetown University’s Kennedy Institute of Ethics.
Participants at the course were doctors, nurses, chaplains, social workers, administrators, lawyers and others, reflecting the mix of staff hospital ethics committees include to ensure these issues are thoroughly debated.
The nearby Washington Hospital Center has two trained philosophers for ethics consultations. At George Washington University Hospital, a special institute on spirituality and health studies faith and end-of-life issues.
”Our technology is ahead of our morals,“ said Washington Hospital Center medical director John Lynch. ”From an ethical point of view, we haven’t learned when to use our technology.
”The biggest problem here is futile treatment,“ he said. ”That’s when it’s clear after some time that a patient, under normal medical circumstances, is never going to get better.
“People say there could be a million in one chance of recovery, but we can’t work that way.”
But when does it become useless to keep tubes feeding and hydrating a patient whose heart works but brain seems dead?
“Our hospital attempted a few years ago to write a policy on futility,” Mary Ruckdeschel, a social worker from Barnes Jewish Hospital in St. Louis, said at the Georgetown course.
“We were never able to do this because people could not agree on the definition of futility.”
Even if further treatment is clearly futile, worried families can have difficulty accepting that a loved one in intensive care will not make it through, several members of hospital ethics committees said at Georgetown.
“It’s a tough one,” said David Harness, Protestant chaplain at Baltimore’s University of Maryland Medical Center.
“Rationally, you can understand there is brain death while the body is still functioning -- but it’s difficult on an emotional level to separate those out.”
Cheryl Fallon, a nurse manager at the intensive care unit in Queen’s Medical Center in Honolulu, was part of an ethics committee that decided it was futile to maintain daily blood transfusions for a woman just about to die from leukaemia.
“The family went to another hospital and asked their ethics committee, which recommended they continue,” she said. “So our attending physician continued them. She died two weeks later.”
While that was exceptional, patients and families often find ways to continue treatment hospital staff might consider futile.
“The two biggest manipulation tools that patients and family use are God and lawyers,” said Nneka Mokwunye, director of the Center for Ethics at the Washington Hospital Center.
“They know that lawyers scare the bejesus out of doctors,” she said, “and if the lawyers don’t scare them, God will. If somebody says you must keep my loved one alive until God performs a miracle, they don’t know how to respond to that.”
“WE DON‘T DO DEATH VERY WELL”
Recent research into the brain seems to be making it more difficult to say when a terminal patient is actually dead. It turns out that patients considered brain-dead may have a minimal consciousness left and therefore still be technically alive.
“The research seems to suggest that it’s very difficult to distinguish the minimally conscious from the permanently unconscious,” said Georgetown bioethics professor Robert Veatch.
“There is increasing skepticism that we can really know when someone is permanently unconscious.”
Several bioethicists linked efforts to keep terminal patients alive by all means to America’s cultural emphasis on staying young and healthy.
“In the U.S., I don’t think we do death very well,” said Dr Christina Puchalski of George Washington Hospital. “When people are faced with death, there is a big push on survivorship, to help people stay alive as long as they can. I don’t think that’s bad, but quality of life has to come into play.”
Hospitals have been urging people for years to sign advance directives setting out what treatment they do or don’t want near the end of life, but only about 15 percent have done so.
”Most Americans don’t really believe they’re going to die,“ Lynch said. ”This is where so many of the problems start.