From
The Salt Lake Tribune in Utah. Here's the article about the
lack of public discussion about the triage policy.
When a killer flu strikes, with several thousand sick or injured and no room to spare in understaffed hospitals, care will be denied to the sickest adults and children.
Those who are severely burned, have incurable and spreading cancer, fatal genetic diseases, end-stage multiple sclerosis or severe dementia will be turned away. They can be sent elsewhere for comfort care, such as painkillers, but they will not be treated for the flu, according to controversial Utah triage guidelines being modeled across the country.
People older than 85 also wouldn't be admitted in the worst pandemic. Those who have signed "do not resuscitate" orders could be denied a bed.
Doctors could remove ventilators from patients deemed unlikely to recover, to give them to other patients.
These triage guidelines envision an outbreak -- or another public health emergency -- so severe that the health care system is unrecognizable. They apply to disasters from bioterrorism to an earthquake.
Developed by the Utah Hospitals and Health Systems Association for the Utah Department of Health, they aren't mandatory and rely on physician judgment.
"The choice is: When you don't have enough, who do you do it for?," said state epidemiologist Robert Rolfs, who joined hospital medical officers, nurses, emergency doctors and an ethicist who wrote the recommendations.
Their answer: Provide the greatest good for the greatest number. Priority will be given to patients who will most likely recover with treatment. People likely to die even with treatment, or likely to survive without it, won't get care.
Largely finalized in January, the guidelines were required as part of the Governor's Taskforce for Pandemic Influenza Preparedness, created by then-Gov. Jon Huntsman Jr. in 2006.
A group convened by the hospital association spent years studying how others allocated scarce resources, including during a severe acute respiratory syndrome outbreak in Toronto in 2003, said Deb Wynkoop, its director of health policy. She said more than a dozen states have adopted some or all of Utah's guidelines.
The state could have decided to provide care on a first-come, first-serve basis or use a lottery, said medical ethicist Jay Jacobson, a workgroup member. Instead, it used a wartime triage model.
"It was difficult grappling with the idea we would say no for any reason," he said.
The recommendations would have been implemented if the H1N1 outbreak in Utah had escalated, Wynkoop said. In the year since the outbreak started in April 2009, the flu has hospitalized 1,334 Utahns and killed 49.
By comparison, the triage guidelines anticipate thousands being hospitalized at once: Every emergency department would be overwhelmed, the state's 5,300 hospital beds would be full, along with another 1,100 beds placed in offices, conference rooms and exam space. Hospitals would be operating with 60 percent to 80 percent of their staff. Ventilators would be in high demand and short supply, without enough respiratory therapists to oversee their use.
Once the governor declared a public health emergency, the guidelines would apply in hospitals but also to physician offices, clinics, long-term care facilities and paramedics, so they don't transfer patients who wouldn't be admitted.
Providers couldn't be sued for denying care in an emergency, except in cases of gross negligence or criminal conduct, under a 2007 state law.
The guidelines show 11 ways an adult can be excluded from care, ranging from a "severe neurologic event" with minimal chance of recovery, such as a stroke, to certain stages of cystic fibrosis.
They don't address how to treat pregnant women, a matter to be decided in the fall.
Children 13 and younger would be turned away for six reasons, including underlying conditions that are often terminal by age 2, including Trisomy 13 or 18 and spinal muscular atrophy. Premature babies with an 80 percent or greater chance of dying would not be resuscitated.
For Raquel Wagner, whose daughter has Trisomy 18, it's almost impossible to fathom that Primary Children's Medical Center could turn her away.
While half of babies born with extra material from the 18th chromosome die after one week, Ashton (pictured) is now 10. Wagner said she has faced and overcome medical rationing -- a panel of doctors opposed fixing the girl's heart defect when she was 2, but eventually agreed. But Ashton has never been denied care for respiratory viruses, or to have her tonsils out.
Developmentally, Ashton has the abilities of a child aged six months to 2, Wagner said. Ashton goes to a special elementary school, scoots around their South Salt Lake home using her hands and legs and can babble "da da" and "ba ba."
"I'd be terrified for her knowing that if my 4-year-old or my 2-year-old [were sick] they would be admitted but she wouldn't," she said. "I would be devastated."
Peter DeWeerd, a family medicine doctor who works in the emergency room of St. Mark's Hospital, participated last summer in a mock drill to test the guidelines.
"It's going to be pandemonium," DeWeerd predicted, noting that denying life-sustaining care runs counter to what doctors and nurses are trained to do. He recalled a mock mother fighting to get treatment for her 7-year-old daughter, who was in a wheelchair and had severe chronic respiratory illness.
"She was doing everything she could to break through security," he said recently. "There's a point we say, 'We're sorry, we don't have the ability to treat your child.'"
He emphasized the need for prevention through vaccinations and having emergency storages of food, water, medicine and blankets.
"Those are the things that are going to keep me and my colleagues from having to make as many of those gut-wrenching, once-in-a-lifetime decisions."
Guideline authors said they tried to avoid judging the quality of someone's life. But they acknowledge they did so when it comes to dementia, based in part on surveys asking whether people would want life-sustaining treatment if they had it, said ethicist Jacobson.
"There is a judgment [that] even if they did survive, the duration of survival and quality of that survival is poor in terms of the value to society," said Rolfs, the epidemiologist.
Physician Norman Foster agrees it is reasonable to allocate scarce care based on a person's underlying cognitive abilities. But he worries about the guidelines' vague language. He is unaware of anyone with expertise in geriatrics or neurological diseases being consulted on the guidelines.
Foster, director for the Center for Alzheimer's Care, Imaging and Research at the University of Utah, said most Utah dementia patients aren't properly evaluated. That means medical staff in a triage situation wouldn't know if the condition was severe, he said. He fears staff could deny care to more people than intended, including people with mild forms of dementia, those with reversible delirium, those with speech problems or the elderly in general.
"Dementia care is not a priority in our health system or among health professionals," he wrote in an e-mail. "There is a significantly greater risk of abuse of these patients in a triage system of any kind."
Other language excludes those with end-stage multiple sclerosis "requiring assistance with activities of daily living."
That language should be eliminated, since "there are many healthy, high-functioning people who require such assistance," the National MS Society said in a statement.
Utah has also been criticized for using DNR status as a reason to deny care.
"Do not resuscitate" refers to not wanting life-sustaining measures if a person's heart or breathing stops. People who sign them likely wouldn't anticipate they would be denied a ventilator for the flu.
The orders "reflect individual preferences" more than "an accurate estimate of survival," said a report by the Institutes of Medicine, which evaluated crisis guidelines from Utah and other states.
Helen Rollins, a retired nurse who helped develop end-of-life care programs in Utah hospitals, said patients typically sign DNRs when they are critically ill. If they get better, it would be "unfair" to use that status to refuse treatment during a separate emergency, she said.
Excluding patients based on DNR status "is one that continues to worry me a little bit," said Rolfs, the epidemiologist. "Judgment [by a physician] is needed."
Besides excluding certain patients, the recommendations prioritize patients for admission and use of a ventilator based on the Modified Sequential Organ Failure Assessment -- a tool that predicts mortality.
One point could make the difference between being sent home or getting a bed -- or being removed from a ventilator.
The scale "was not designed as a prospective predictor of survival," the IOM report said, noting it is unknown whether the difference of a single point means a patient is more likely to recover.
Wynkoop said Utah doctors evaluated the scale by examining the records of past intensive care patients. Those who would be denied care under the guidelines died even after the most aggressive treatment, she said.
"We've got to start from somewhere," she said. "Just saying we're not going to have any [evaluation tool] doesn't appear to be humane."
Patients denied care would be sent home or to another facility and provided with sedatives and painkillers to keep them comfortable until they die.
"Many of us have a family member or a friend who is on that exclusion list,"Rolfs said. "You look at it and you think about it.
"These are not going to be easy times."
From The Salt Lake Tribune in Utah. Here's the article about the lack of public discussion about the triage policy.