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. He shook Barnes' arm. No response.
"I was shocked by what I saw," Beseres later said of the Jan. 21 bedside visit.
Whether Barnes is dying is in dispute, with his wife, Lana, and Methodist Hospital doctors due to resume arguments over his medical care Wednesday in Hennepin County Probate Court in Minneapolis.
No matter who prevails, the dispute has re-opened 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 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 University of Minnesota professor of law and public health.
After Wednesday's hearing, a judge will decide whether Lana Barnes remains in charge. A Methodist Hospital doctor wants to take decision-making rights from her because he believes she is demanding hopeless and painful treatments. The 56-year-old wife accuses 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 temporarily took that away in January. Alternate Decision Makers Inc., a Minneapolis firm, is Barnes' guardian until the hearing is resolved.
Minnesota law gives substantial weight to written directives, and to decision-makers appointed by those documents -- but only when they request care considered reasonable by current medical standards. Doctors and relatives can disagree on what reasonable means.
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." But he said their attitudes change when he asks them to picture those loved ones walking into their own hospital rooms and hearing "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."'
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.
Numerous doctors have assessed Barnes in the past year, and agree on his prognosis. According to court records, Barnes suffers from 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.
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 wrote in a log that Barnes "mouthed yes" when his wife asked if he wanted pain medication.
While doctors dispute that Lyme disease can be chronic, or that aggressive antibiotic treatment works, Judith Weeg of the Lyme Disease United Coalition has been scrambling to find doctors who will provide antibiotic treatment. "This is an issue of ageism," Weed said. "... Why not experiment? What would it hurt?"
Two sons from Barnes' first marriage, James and Clint, told the Star Tribune they oppose aggressive treatment, but have been muted by their stepmother.
(Contact Jeremy Olson at jeremy.olson(at)startribune.com.)
(Distributed by Scripps Howard News Service, www.scrippsnews.com.)