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Julie Rasmussen can’t remember exactly how many screws are holding her spine in place. There were 14 inserted during her first surgery, she thinks, and probably eight or 10 in her second.
“So maybe 22 total?” she shrugs.
The problem is, though, that it’s not enough. Rasmussen has a genetic disorder that collapses the joints in her vertebrae like a hammer pounding through Jell-O. She was supposed to have a third surgery earlier this month, to further reinforce her bones with more hardware, get rid of the excruciating pain and hourslong seizures she has every day, and prevent her from becoming permanently paralyzed.
But — like most surgeries postponed in Utah and across the country during the coronavirus pandemic — she was told the operation was “nonessential.”
“How is this not essential to get fixed? How is this ‘elective’?” asked Rasmussen, 27, of Bountiful. “I’m in so much pain, I can’t get through the day. And I can’t get any help.”
To address that concern, Utah Gov. Gary Herbert has now called for elective surgeries to resume, after a break of several weeks. It won’t be an immediate fix, though, by any means.
There is at least a monthlong backlog of cases, and surgeons won’t be working at their regular pace. Instead, Herbert said, the process will be “measured and cautious” to continue preserving medical equipment and to not spread the virus — which is why the surgeries were stopped in the first place.
Priority, too, will be given to simple, outpatient procedures that don’t use a lot of hospital resources or require long stays for recovery, noted health care leaders from across the state on Wednesday. So more serious cases, like Rasmussen’s, will likely continue to be delayed unless they’re deemed an emergency.
They could also be called off again at any point if COVID-19 cases spike in the state.
“We’re able to relax some of the restrictions we had in place before,” Herbert advised during a news conference Wednesday explaining the decision. “This does not mean that the pandemic is over. It’s a balancing act. And this is an incremental step in the right direction.”
Rasmussen said the move has left her with almost more uncertainty than before. Now she wonders if she’ll be considered “essential enough” for rescheduling and, if so, whether that date will stick. Her surgeon is also currently helping with the crisis in New York. Will he be able to return? Will it be safe for her to be at the hospital? How much longer can she wait?
What’s the alternative? “I just feel helpless,” she said. “It’s so frustrating. And there aren’t many answers.”
‘This isn’t ... flipping a switch’
Some of what it will take to resume surgeries, including dental operations, in Utah during the pandemic is still being worked out, said Intermountain Healthcare spokesman Jess Gomez. That primarily includes the timing.
Under an earlier state order banning elective operations, which took effect March 25, anything that was not considered “life-threatening” was put on pause.
Lifting that comes now as the state has 3,445 cases of the coronavirus and 34 deaths — with the latter rising steadily in the past week. There are also 288 people here who have been hospitalized as of Wednesday. That’s up 11 from Tuesday, which was up nine from Monday.
The Utah Hospital Association, which provides guidance for medical centers in the state, has released a roadmap that says “urgent and time-sensitive” surgical procedures should only resume after 14 days of a decreasing number of hospitalizations.
That has not yet happened in the state. But Michael Baumann, a member of the association and the chairman for MountainStar Healthcare, which has seven hospitals in Utah, said they’ll be using overall trends and not “day-to-day variations.” And with those, the largest health care organizations here, including Intermountain and the University of Utah, feel comfortable moving forward.
“We’re down to smaller numbers,” Baumann said. “The downward trend has been consistent since early April.”
That means surgeries could start again any time now. Every patient scheduled for surgery will be required to first complete a COVID test — which take around 24 hours to get results — have their temperature taken and fill out a health questionnaire.
There are no specific types of surgeries that will or won’t be handled. Some older patients, considered at higher risk for COVID-19, may still be turned away. Anyone that can wait will be encouraged to do so. Anything considered “time sensitive,” such as most cancers, will likely be addressed.
Some of the emphasis will be on patients who are suffering or whose conditions will significantly worsen with too much time, Baumann said. But for the most part, individuals who won’t need to take up a bed for a long recovery time will get the first slots.
“We still don’t want to do cases that will overwhelm our resources,” added Sam Finlayson, who oversees surgery at the University of Utah Hospital. “This isn’t a matter of flipping a switch and saying we’re doing all surgeries now."
Among those remaining in an even more gray area, he acknowledged, are transplant patients.
After months of waiting, Troy Dougall thought he’d finally be getting a new kidney this summer.
The 27-year-old has polycystic kidney disease, a genetic disorder that has slowly deteriorated his organs. Normal kidney function is rated on a scale up to 120, marking the best. According to his last checkup, Dougall’s are at a 15.8 — in the failure zone. Anything below a 20 puts a patient on the waiting list for a transplant.
Dougall was lucky in that a family member was a perfect match and willing to be a live donor. But with the virus outbreak, live donations were actually the first transplants to be put on hold.
Those waiting for a transplant from someone who is deceased can’t put it off because those organs are only viable outside of a body for a short period of time. But Dougall, for instance, can wait because the kidney his family member will share is fine as long as they are. Meanwhile, having Dougall at the hospital for surgery during the pandemic could increase his risk for contracting COVID-19.
“It’s sort of a conundrum,” Dougall said. “It’s strange, but it’s the healthiest option for people like me.”
He was supposed to have his transplant in July. Now doctors are playing it week by week. If they wait and his kidneys continue to worsen, he’ll be put on dialysis. Only if that doesn’t work will he be moved up for surgery.
Overall in Utah, there are 823 people waiting for an organ donation; the highest percentage of those are for kidneys, with 575.
Alex McDonald, the spokesman for DonorConnect, which manages the Utah organ donor registry, said that’s on the high end of normal. But the virus has only impacted surgeries here for about a month. It could get worse, especially for those like Dougall with live donors or where dialysis is an option, if things continue to be delayed.
At the University of Utah Hospital, spokeswoman Kathy Wilets said, fewer than 10 have been postponed so far. The other hospital systems in the state did not have numbers.
But transplants, in general, get at the heart of what’s behind the essential versus nonessential surgery designations.
Some hospitals use the term “elective,” but that doesn’t mean the surgery is optional. There are different levels of need within that, and it’s mostly used to refer to operations scheduled ahead of time. The more accurate way to describe it is emergent or non-emergent. A surgery is essential if it’s an emergency and a patient could die soon without it.
With transplants, that’s usually the case. But they’re difficult, too, because in order to a receive a new organ, a patient’s immune system has to be depleted so it won’t fight off the transplant.
“They could then turn around and get the virus because of that,” McDonald said.
Those factors are what the health care systems in Utah are considering as they decide which surgeries should continue to wait. The hospital association here has created a sliding scale based on how bad the pandemic is. For now, the state is still in the “red” phase, meaning simpler surgeries and emergency surgeries only.
It hopes to move to “orange” soon and then “yellow” and “green” to be able to take all cases.
“We’ll continue to watch the situation and have these conversations,” said Mark Briesacher, the chief physician executive at Intermountain Healthcare.
‘Not high in the queue’
Perhaps the biggest driver behind the state’s decision to allow elective surgeries again, Herbert acknowledged, is that the hospitals here have enough protective equipment to do so and also respond to the coronavirus pandemic. California is also following suit, but that’s certainly not the case in many other states across the nation.
Greg Bell, the leader of the Utah Hospital Association, said Utah is in a unique place and lucky in many regards to be able to resume surgeries. “This is a clinically driven decision,” he added.
Location within the state matters, too, though: Providers will have to weigh how much protective gear they have and how many cases of COVID-19 they’re treating.
G.J. Willden, a physician at Gunnison Valley Hospital in rural Utah, is counted in Utah’s central health district with 21 cases. He said right now his system has a high capacity to do nearly much all surgeries. “Our patients are eagerly awaiting this,” he noted.
Meanwhile, in Salt Lake County, one of the worst hit areas in the state, it’s possible that even some easy, outpatient surgeries will continue to wait.
Scott Renshaw, the arts and entertainment editor at Salt Lake City Weekly, is waiting for a hernia operation. He had it scheduled for “the week everything went sideways,” and it was delayed. Because it’s not pressing and the county faces high COVID-19 demands, the 53-year-old doesn’t expect to get on the schedule any time soon.
“I don’t know what the backlog is or what the line I’m in looks like,” he said. “But I’m definitely not high in the queue.”
Rasmussen, whose spine is unstable and has Ehlers-Danlos syndrome, said she understands postponing some surgeries and is glad Utah is in a place to start those again. But she wants doctors to prioritize those most in need first instead of doing outpatient procedures.
Most days she wears a neck brace. On the harder ones, she uses a wheelchair. “By the evening, I can’t handle being upright. It causes seizures and more pain,” she said.
It would have been simpler, she believes, to have just continued with serious cases like hers. Now she’s worried about where she, too, will end up on the list to reschedule.
For her, that’s one of the most frustrating parts of all of this — and not knowing exactly how many more screws in her spine it will take for her to finally feel better.