Al Barnes has been in eight hospitals in the past 10 months. His diagnoses include end-stage respiratory distress, renal failure, dementia and other maladies.
Now the 85-year-old from Scandia, Minn., is at the center of a wrenching and unusual court struggle over who will control his medical care.
A doctor at Methodist Hospital in St. Louis Park will go to court Wednesday, seeking to replace Barnes' wife with a substitute decision-maker and arguing that she is making futile and reckless decisions to prolong her husband's life.
The case, scheduled to be heard in Hennepin County Probate Court, pits not just Methodist but the opinions of several Twin Cities hospitals against a woman who believes her husband can recover from his vegetative state. While Barnes is being fed via a tube and breathing through a ventilator, Lana Barnes said that is because of treatable infections and fluid buildup in his brain that is often misdiagnosed.
"I know my husband. I know I'm not crazy. I know that Al is there," said Barnes, 56, who was placed in charge of her husband's care several years ago through his written health care directive. She filed paperwork Tuesday to move the case to a Chisago County court nearer to her home in Scandia.
Methodist is but the latest hospital to assume Barnes' care, and to clash with his wife in a case that raises highly charged questions about the care of gravely ill patients.
When Regions Hospital in St. Paul discharged Barnes on Christmas Day last month, the discharge summary suggested that his wife had a "fixed delusion" that his dementia and other conditions were reversible.
According to court records, one doctor offered a blunt assessment: "Given that Mr. Barnes has long ago (more than 2 years) lost his capacity to participate in his medical decisions and that his advancing dementia has robbed him of the capacity to communicate meaningfully with others, it is difficult to imagine that prolonging his dying has been worth the pain and suffering he had endured."
Barnes is a Navy veteran who before retirement owned a business in Minneapolis. He has six sons, including two with Lana Barnes, his wife of the past 27 years.
Lana Barnes said some negative opinions about her husband's prognosis were rendered by physicians a few years ago, and they have poisoned the medical judgments of doctors who have since taken over his care.
She believes the central problem for her husband is a swelling of the brain known as "normal pressure hydrocephalus,'' which can be misdiagnosed as Alzheimer's disease and other forms of dementia.
She believes that if the swelling were reduced -- and if doctors treated her husband's infections and resumed dialysis for his kidney failure -- he could recover and live at their rural home with 24-hour nursing care.
His care is funded through the federal Medicare program and a supplemental Medica insurance policy, his wife said.
Lana Barnes offered examples of her husband's wherewithal, including the way he puckered his lips last month when she asked him for a kiss. She sees signs at the hospital, as well.
"When I go there, he'll open his eyes, he will raise his eyebrows, he will attempt to speak by moving his lips," she said in an interview Tuesday. "But with the [breathing] tube in, there is no sound."
'A true ethical dilemma'
Barnes' case was in court in 2005, when he was receiving treatment at the University of Minnesota Medical Center, Fairview.
Doctors there were concerned about Lana Barnes' refusal to consider a nursing home for her husband, who at the time needed a feeding tube and was described as combative because of his dementia, according to court records.
Lana Barnes retained control over her husband's medical decisions at the time, but the court required that she comply with medical recommendations.
The latest court filing alleges that she hasn't followed through with that commitment.
It specifically seeks to transfer authority to Alternate Decision Makers Inc., a Minneapolis firm that serves as an independent guardian or conservator in disputed cases.
Court involvement in such cases is unusual, but not unprecedented, said Mary Faith Marshall, who runs the ethics consult service at the U of M Medical Center.
"It's a true ethical dilemma," said Marshall, speaking generally and not about the Barnes case. "Whichever path you choose, you're going to compromise somebody's values. The approach to that sort of case is to find the option that offers the most benefit and the least harm."
Last month, Barnes was home from Regions for only a few hours before he started choking and his wife called for an ambulance to take him to Methodist.
Disagreements developed quickly. Lana Barnes said the hospital refused to provide treatment for his infections and repeatedly recommended comfort care instead of procedures to help Barnes recover.
Lana Barnes "insisted" in a Dec. 26 letter that the hospital pursue lifesaving treatments: "Albert has said repeatedly and maintained that 'If there is a chance I can get better, any chance at all, I want it!'"
Jeremy Olson • 612-673-7744