In Southern Oregon, Bill Harris is trying to stop the feeding of his wife Nora Harris, an Alzheimer’s patient. Harris is blunt about his desire that Nora no longer be fed. “I want her to pass. I want her to end her suffering. It’s not a right-to-life issue. It’s a right-to-die-issue.” Nora Harris, 64, was diagnosed with Alzheimer’s in 2009 and cannot communicate coherently or feed herself. She is being spoon-fed by staff at Fern Gardens facility in Ashland. According to Oregon law, healthcare workers at nursing homes and assisted living facilities must offer food to patients by cup or spoon. Patients can refuse food, but they must be given the opportunity to eat.
Following her diagnosis, Nora signed an advance directive appointing her husband as her health care representative. These directives generally allow named agents the power to withdraw artificial hydration and nutrition in the form of feeding tubes. However, when the same nourishment is offered by hand, several states, including Oregon, draw the line, according to Thaddeus Mason Pope, director of the Health Law Institute at Hamline University, and an expert on end-of-life law.
Eric Foster, Nora’s court-appointed attorney, argues that her directive does not specifically mention food and drink presented by hand. Because Nora now opens her mouth and swallows when food is offered, she has, in essence, changed her mind. Beth Kallmyer, vice president of constituent services for the Alzheimer’s Association acknowledges that it’s hard to tell whether a patient is acting out of reflex or desire. Kallmyer explains, “If they’re eating and they’re opening their mouth, it’s difficult to say they didn’t want it.”
Alex Schadenberg, director of the Euthanasia Prevention Coalition, maintains that if a patient is still able to open his or her mouth for food and water, they are making a cognitive choice, even if they have a mental disability. Schadenberg points out that generally accepted healthcare ethical standards – as well as Oregon law – don’t categorize spoon or cup feeding a form of medical treatment. Despite the temptation for doctors, caregivers, and insurance companies to offer a cheap, easy end to the life of a terminally ill or disabled person, Schadenberg insists, “Disabled or terminally ill people are no less human even though they have a physical reality that may be very difficult to accept. We are all equal.”
Last summer, a local judge ruled against Bill Harris, concluding that Oregon state law mandates that she continue to receive help. While Fred Steele, Oregon’s ombudsman, sympathized with Harris’ situation, he found Nora’s advance directive wasn’t specific enough to advise the care facility to withhold food and water. Nora’s weight has fluctuated and she has twice been put on hospice. Bill Harris is now considering going back to court to try to stop the snacks that maintain Nora’s weight.
Pope summarizes, “We have this thing where you’re allowed to refuse medical care. But this is basic care. Are you allowed to refuse basic care?”
[A bill introduced in the Oregon Legislature last summer, SB 494, would have allowed the amending of the state’s advance directive form. Oregon Right to Life and others opposed the bill, arguing that it paved the way for mistreatment of vulnerable people, including dementia patients like Nora Harris. The bill passed the Senate, but failed to advance.]