Albert Barnes, an 85-year-old resident of Scandia, Minnesota, is an end stage renal disease patient who also suffers from chronic respiratory failure and dementia. Understand that these are most likely three different, unrelated diseases. But no one knows for sure. His wife, Lana, believes that Barnes’s dementia has been misdiagnosed and related to Lyme disease. She says Barnes tested positive for Lyme disease in the early 2000s and that his current dementia is a direct result of excess fluid and pressure in the brain from the Lyme disease.
Park Nicollet Methodist Hospital says Barnes is terminal and needs hospice care. Methodist Hospital says “Mrs. Barnes’s irrational beliefs have caused her to consistently demand unnecessary, inappropriate, and in some cases harmful testing and treatment for Mr. Barnes. Lana Barnes is no longer acting in the best interest of Albert Barnes and fails to advocate as a competent health care agent,” according to Bill Keller of Fox 9 News. Methodist Hospital has filed a court petition to have Lana Barnes removed as her husband’s healthcare agent and replaced with an emergency guardian.
Lana Barnes responded to Methodist Hospital’s petition with a request that her husband receive dialysis until their next court appearance on 2 February 2011. Albert Barnes’s attending physician at Methodist Hospital testified that dialysis “wouldn’t improve his quality of life because he suffers from irreversible dementia and is unable to communicate,” according to Keller’s report. Keller also reports that no other medical facility in the state will accept Barnes for dialysis.
Park Nicollet spokesman Jeremiah Whitten told Keller that the hospital’s “thoughts are with the Barnes family, our focus is on Mr. Barnes and making sure he received the best possible care.”
While corporate news outlets readily identify the patient and his spouse; they fail to identify the attending physician.
If all Lana Barnes is asking for is dialysis for her husband, that’s certainly not irrational. Nor, necessarily, is her belief that her husband’s dementia is a result of Lyme disease. Dementia associated with Lyme disease is rare, to be sure, but not unheard of.
I spoke with Lana Barnes this morning. She seems to be reasonable and a woman of very strong faith. She told me that Methodist Hospital has “denied her husband dialysis since Christmas day” and that Albert’s doctors said then he had “less than two weeks to live.” Lana Barnes firmly believes that “God is going to heal” her husband and claims all she’s asking for is dialysis. She maintains that at least part of the reason why her husband remains on a ventilator at Methodist Hospital is because he hasn’t been dialyzed. As a result, she says, fluid has settled in his lungs. Lana Barnes said her husband’s mis-diagnosed dementia is a result of “normal pressure hydrocephalus” and is adamant that if the brain swelling were reduced and if Albert’s infections were treated, he would at least partially recover.
End-stage renal disease is uncurable but treatable with dialysis or a kidney transplant. Dialysis keeps end-stage renal disease patients alive by removing toxins and fluid and has to do with quality of life only to the extent that it keeps the patient alive. In my own case, dialysis treatments undoubtedly keep me alive, but treatment from an alternative medicine practitioner keeps me relatively well. Does that make me “delusional” as Methodist Hospital accuses Lana Barnes?
If Methodist Hospital is referring to Lana Barnes’s belief that God is going to heal her husband as evidence of her irrationality and delusion, perhaps they should start with Healing and the Mind by Bill Moyers. In the book and the Public Broadcasting television series, Moyers explores how belief- and thought-systems and mind/body medicine are being applied to various medical conditions by experts across the US. There’s a lot the western medical model doesn’t understand and mind-body interaction is just the start. If we are clueless to explain the cause of dementia, who’s to say it’s not reversible?
Jeremy Olson, writing for the Star Tribune, notes that Albert Barnes’s healthcare coverage is provided by both Medicare and supplemental Medica insurance. Olson cites instances Lana Barnes gives for her husband’s responsiveness, including opening his eyes, raising his eyebrows, puckering his lips when asked for a kiss, and “... attempt[ing] to speak by moving his lips.” This appears to be in conflict with Olson’s reporting that Albert Barnes is in a vegetative state. But then Olson also conveniently sidesteps the whole end-stage renal disease and dialysis issue as well.
Olson cites a 2005 court case resulting from Lana Barnes’s refusal to place her husband in a nursing home. She retained healthcare agency control over her husband’s healthcare treatment but was required to comply with medical recommendations. “The latest court filing alleges that she hasn’t followed through with that commitment,” writes Olson.
Without dialysis between Christmas day and 2 February 2011, Albert Barnes will very likely die. If Methodist Hospital’s focus is indeed on making sure Barnes receives the best possible care, why won’t they dialyze him? After all the actual cost of dialysis is less than US$200 per treatment. If it’s because he’s in a vegetative state, it’s probably understandable; if it’s because it might extend his life in order for the other issues to be treated, it’s unacceptable.
Albert Barnes’s healthcare providers have “repeatedly recommended comfort care instead of procedures to help Barnes recover” according to Olson. And therein lies the ethical dilemma. What are the boundaries between a patient’s advanced healthcare directive, healthcare agency, and appropriate end-of-life care? This is a discussion that needs to take place. Let’s start by acknowledging that these issues have absolutely nothing whatever to do with the recently enacted healthcare reform legislation, but that issues of cost are just as absolutely involved. Olson reports Lana Barnes as saying that her husband’s advanced healthcare directive was clear: “If there is a chance I can get better, any chance at all, I want it.” But Olson fails to make absolutely clear whether or not Barnes’s healthcare providers have indicated there’s “any chance at all.”
If I was 85, and had dementia and respiratory failure in addition to my end-stage renal disease, I would frankly opt for 500 micrograms of Bear‘s best, a fistful of painkillers, and a fistful of muscle relaxants. In that order, and enough of the latter to ensure that my exit was not prolonged but peacefully ecstatic. But that’s me and my choice (and my wife if I’m unable to make my wishes clear)—I’m not Albert or Lana Barnes.
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