Case raises agonizing end-of-life questions

Al Barnes lay motionless in his hospital bed -- head to the side, mouth agape -- as the court-appointed attorney searched for consciousness in his 85-year-old client.

"Al!" yelled the attorney, Steven Beseres, to no avail.

He touched Barnes' arm, then squeezed it, then shook it. No response.

"I was shocked by what I saw," Beseres later said of the bedside visit on Jan. 21.

Whether Barnes is dying is in dispute, with his wife, Lana, and doctors from Methodist Hospital due to resume arguments over his medical care Wednesday in Hennepin County Probate Court.

No matter who prevails, the dispute has re-opened unsettling and widely debated questions about end-of-life care: when to pursue aggressive care, when to let death take its course, and who makes that call. Whether people agree with Lana Barnes' controversial claims or not, the case also plays on their fears of what might happen if they disagree with their doctors.

"That is what makes this particular case so unsettling for so many people," said Michele Goodwin, a professor of law and public health at the University of Minnesota, "because one doesn't want for one's spouse to be harassed, especially when that person is attempting to carry out what he or she believes that the individual would have wanted."

After Wednesday's hearing, a judge will decide whether Lana Barnes remains in charge. A Methodist Hospital doctor wants to take decisionmaking rights from her because he believes she is demanding hopeless and painful treatments. The 56-year-old wife is accusing the doctor and others of misdiagnosis that has left Barnes substantially -- but not irreversibly -- incapacitated.

Barnes granted his wife authority over his care in a written health care declaration in 1993, but the court took that away temporarily earlier this month. Alternate Decision Makers Inc., a Minneapolis firm, is Barnes' guardian until the hearing is resolved.

Case is rare

Minnesota law gives substantial weight to written directives, and to decision-makers appointed by those documents -- but only when they request care that is reasonable by current medical standards. That does raise the potential for conflict, because doctors and relatives can disagree on what reasonable means.

Even so, people shouldn't see the Barnes case as reason to worry that their own advance directives won't be followed, said Dr. Steven Miles, a University of Minnesota expert in end-of-life care.

Nine of 10 deaths are preceded by families making decisions to halt some type of life-sustaining treatment, he said. When disagreements arise, families and doctors usually resolve them within five days.

In the Barnes case, the wife's requests appear so unrealistic that they suggest she isn't fit to make the decisions entrusted to her, Miles said. "If you ... ask to have your appendix out, even though you don't have appendicitis, you're going to have a hard time talking a doctor into that. What does that mean? That your wishes aren't being respected?"

One lesson from the Barnes case, experts agreed, is the need to be explicit in medical directives. Barnes' directive merely granted decision-making authority to his wife -- leaving everyone to trust her judgment that he would want aggressive, life-sustaining care.

Disputes like this could be avoided if those documents provided explicit details of someone's values, goals and preferences for end-of-life care, said Dr. Tom Von Sternberg, associate medical director for geriatrics at HealthPartners.

So often, he said, people describe loved ones as "fighters" who wouldn't give up. But he said their attitudes change when he asks them to picture those loved ones walking into their own hospital rooms.

"If he were to come in today and see himself now and hear from the doctor what his future holds ... what would he tell us to do?" Von Sternberg said. "People stop me in mid-description and say, 'He wouldn't want this.'"

Gravely ill

Barnes distinguished himself in World War II as a torpedo man on a Navy destroyer. He had six sons -- four from his first marriage and two with Lana Barnes. He owned a Minneapolis business selling sand and gravel for construction. His wife described him as a brave man who doesn't fear death, but clearly wanted treatment if there was any chance at life.

Numerous doctors have assessed Barnes in the past year, and agree on his prognosis. According to court records, Barnes suffers from a level of dementia so profound that doctors believe it is pointless to treat his kidney failure and respiratory failure.

Dr. Abel Tello, the Methodist kidney specialist who filed the petition against Lana Barnes, declined to provide dialysis for Barnes' failing kidneys because of his dementia. In court, he said he has found no other doctors in the Twin Cities or Rochester who would take over Barnes' care and provide dialysis.

Lana Barnes believes her husband suffers from chronic Lyme disease, and that antibiotic treatment of the tick-borne bacterial infection would reverse his dementia -- and necessitate treatment for his other conditions as well.

Despite Beseres' first encounter with his client, Lana Barnes insists her husband has shown signs of awareness. Video from mid-2010 shows him saying "ya" in response to a question, she said. A nurse on Dec. 2 indicated in a written log that Barnes "mouthed yes" when his wife asked if he wanted pain medication.

Lana Barnes has found allies, including Judith Weeg of the Lyme Disease United Coalition, who has been scrambling to find doctors who will provide antibiotic treatment. "This is an issue of ageism," Weeg said. "Eighty-five today is not what it was in our grandparents' era."

While doctors dispute that Lyme disease can be chronic, or that aggressive antibiotic treatment works, Weeg said it's worth the attempt in Barnes' case.

"Why not experiment?" she asked. "What would it hurt?"

Not all of Barnes' relatives agree with Lana. Two sons from Barnes' first marriage, James and Clint, told the Star Tribune they oppose aggressive treatment, but have been muted by their stepmother.

Relatives have murmured about self-interest on both sides. But Barnes' eldest grandson, Nathan, said he believes this is a dispute over what is best for his grandfather.

"While I do appreciate that Lana is impassioned to fight for my grandpa to have every possible intervention for recovery," he wrote, "the facts of the case speak for themselves that he will not recover."

Family disputes are common over end-of-life decisions, experts said, which makes it all the more important for people to write thorough directives and share them.

Goodwin said it becomes especially complicated as doctors and relatives argue over what medical care is reasonable. In other patients with Barnes' level of kidney dysfunction, dialysis would be reasonable. But doctors aren't recommending it for him because it can be painful and may not prolong or improve his life.

"Nobody wants to hear about futility when it comes to the end of life," Goodwin said, "because it's natural to think in very hopeful terms ... and about the possibility of miracles as well."

Relatives often struggle with that "one-in-a-million" feeling that their loved ones will survive incurable diseases, Von Sternberg said.

There are no certainties, but doctors have to make treatment decisions on medical evidence, not hope, he said. "It's important to note that if a miracle will happen, it is completely independent of whatever I do."

Jeremy Olson • 612-673-7744