This year, Oregon became the first state to no longer ask about feeding tube preferences on a legal form patients use to avoid unwanted emergency medical interventions. Now, the team of providers who created the form are urging other states to follow suit.
In an editorial in the Journal of the American Geriatrics Society, Dr. Susan Tolle and colleagues from Oregon Health & Science University, argued that placing feeding tubes is never an emergency and should no longer be on the form.
Portable Orders for Life Sustaining Treatment, known as POLST forms, are meant to be displayed prominently in homes of people with life-threatening conditions who want to limit the amount of emergency medical intervention by first responders or emergency room doctors. Oregon’s POLST forms, the first in the nation, have included the feeding tube section since they were created in 1993.
At the time, doctors thought that providing artificial nutrition through feeding tubes surgically inserted through the abdomen would extend the lives of patients with dementia. Over time, research showed that wasn’t the case, and that feeding tubes increased the rate of bedsores, and led to agitation and delirium. Hand feeding patients with dementia is now considered a better option.
Including the section on the forms, Tolle said, left patients and families expecting that feeding tubes would be used and set them up for conflict with providers who no longer recommended them. Families often couldn’t understand why doctors were withholding the feeding tube after their loved one had expressed a preference for one on the POLST form.
“You’ve got this empty promise that’s kind of misleading,” Tolle said. “With no good on the other side.”
Feeding tubes are useful for patients with other conditions that make feeding difficult, including amyotrophic lateral sclerosis, known as ALS, or people recovering from a stroke.
“But we’re arguing that none of them needed a POLST form to have this conversation,” Tolle said. “It’s in the wrong place, at the wrong time, it’s with the wrong group.”
Patients who would benefit from a feeding tube have time to discuss that option with their doctors before the surgery. The change will not require people with POLST forms to fill out a new one.
In 2011, Oregon removed a section about antibiotic preferences after data showed that one-third of patients received antibiotics in their last 60 days of life regardless of what they put on their POLST forms. Tolle said that change took four years to implement.
“The form has a life of its own,” she said. “In many states, it ends up in regulations and statutes, so getting it changed takes a very big crowbar.”
Dr. Alexander Smith, an associate professor of medicine at the University of California, San Francisco, said any change made by Oregon and backed by Tolle is likely to set a trend for other states.
“This isn’t like some random state, some random person,” he said. “It’s Susan Tolle. It carries a lot of weight. It’s a big deal.”
Some doctors may object to the removal of the feeding tube section, arguing that it does have utility for ALS and other conditions. Merely having it on the form prompts doctors to discuss the issue with patients, Smith said.
“The main point is those decisions are decision that can be thought about over time, deliberated and debated,” he said. “If POLST is a primary a tool for emergency medical decisions, it doesn’t belong on that form.”
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