Just days before California’s stay-at-home orders came down, Fay Gordon was in a Bay area hospital having cancerous tissue removed from both of her breasts.
Now back in her Oakland home, the 35-year-old mom is recovering from the double mastectomy without the follow-up appointments and physical therapy she anticipated.
“Pretty soon after I got home, those appointments were canceled, rescheduled to video appointments,” she said. “The rest has sort of been on my own to figure out, but I’m doing my best … it’s certainly different than meeting with someone in person and having that one-on-one assistance.”
Since mid-March, hospitals across the nation have been postponing medical visits and elective procedures in order to save staff and resources for a potential surge of COVID-19 patients. Gov. Gavin Newsom announced this week that he wants to loosen those restrictions as part of the exit strategy from shelter-in-place. But providers are still figuring out how to safely return to normal, while patients like Gordon are anxiously waiting for a green light.
“The loss of breasts for a woman is very traumatic and for me has been a big mental shift,” she said. “Not knowing when I will complete this process is unnerving and very surreal.”
The term “elective” encompasses anything that isn’t considered an emergency. That can be a nose job, a joint replacement or, as in Gordon’s case, a cancer-related reconstruction surgery. Removing non-life-threatening tumors, replacing heart valves and unblocking arteries are also generally considered elective, but Newsom listed these as some of the first procedures that could come back. He also mentioned preventive screenings such as colonoscopies.
“These are not surgeries that are cosmetic,” Newsom said Wednesday. “These are important medical procedures that if not attended to could become crises and could ultimately burden the rest of the health care system.”
The halting of regular medical procedures has been a hardship for patients, and it’s also had significant impacts on California’s health economy. Hospitals say they’re losing major cash flow from not being able to perform surgeries and have had to lay off staff. Community clinics are worried they’ll be forced to close their doors if they can’t bill insurance companies for services. Experts say there could be significant damage if the gears don’t start turning again.
“There’s definitely a pretty major fallout,” said Katherine Hempstead, a health policy expert with the Robert Wood Johnson Foundation. “Even though you have this sense that the health care system is so incredibly busy and overworked, it’s kind of a paradox. At the same time we see a lot of really downbeat financial news … a lot of people that are not working, and not getting paid.”
As California health leaders and hospital executives make decisions about how many furloughed employees to bring back, which units to re-open and what surgeries to begin performing again, patients are hoping the allowances will be broad.
Gordon is not sure whether the procedures she needs to replace her breast tissue will be permitted, even when restrictions loosen. But she feels they should be.
“This reconstructive surgery is really seen as the last part of this very difficult process,” Gordon said. “To not have a timeline for that, and for it to be associated in any way with a cosmetic procedure, is very unsettling.”
Decisions about which surgeries to cancel or continue can vary widely depending on how big a hospital is, how much COVID-19 activity is happening in the area, and how urgently a patient needs a particular procedure.
The American College of Surgeons issued the initial guidance on canceling elective surgeries, and created a scoring system with 21 considerations for hospitals trying to manage their resources.
But there’s no cut-and-dry list for which surgeries to bring back, said Dr. Clifford Ko, who works with the group and serves as vice chair of the UCLA Department of Surgery.
“Can I do this reconstruction? Can I do this hernia repair? Can we treat these patients safely while we’re having to deal with this pandemic?” he said. “Some places cannot, and some places that have low [COVID-19] rates and lots of resources will be able to ... It’s very much a hospital by hospital case by case basis.”
Early on in the crisis, hospitals that continued to do elective surgeries such as hip replacements, gastric bypasses and cataract repairs faced criticism for not preserving protective equipment that could be needed in the event of a COVID-19 surge.
But some administrators, including those at the UC Davis Medical Center in Sacramento, said they felt confident they could maintain their operating room schedule. In an email, UCDMC spokesperson Edwin Garcia wrote that the hospital continues to perform “surgeries for cancer, trauma, birth defects, transplants and urgent physical body repair” and that they are assessing which procedures to resume given the governor’s latest address.
He said the impacts of the temporary pause are already becoming apparent.
"We have been seeing an increasing number of patients in our emergency department who are there because they were delaying needed care,” he wrote. “We don’t yet know how long the backlog will be in resuming scheduled surgeries.
We have been seeing an increasing number of patients in our emergency department who are there because they were delaying needed care.
Liz Helms with the California Chronic Care Coalition has been wondering about that backlog. Her advocacy group represents people with hepatitis, arthritis, diabetes and a long list of other conditions.
She said she understands Gov. Newsom’s decisions, but she’s been struggling to come up with answers for frustrated members who’ve missed important procedures.
“Now when they start to open up the doors to allow elective surgeries or non-essential surgeries back online, is that system going to be overwhelmed?” she said. “How long are they going to have to wait to get in? How long is it going to take to get that back to some kind of normal?”
A ‘Hurry Up and Wait’
The resounding opinion in the medical world is that California’s “better safe than sorry” strategy is paying off.
Early data shows the state’s mitigation measures, including shutting down businesses and asking people to stay at home, have flattened the curve of the disease and reduced the strain on the health system. There have been roughly 3,350 patients hospitalized with confirmed COVID-19 cases statewide, and 1,630 with suspected cases.
Hospitals spent weeks preparing for the surge, which included canceling thousands of procedures, as well as converting entire hospital wards for COVID-19 care.
In some places, that’s led to eerily quiet waiting rooms.
“It is kind of ‘hurry up and wait’,” said Jason Wells, president of two Adventist Health hospitals in Mendocino County. “We’re ready to go, we have doubled our capacity … we’re kind of waiting to see what comes.”
He said emergency department visits are down about 70%.
“We’re creating the capacity. But yet, Mendocino County has not had any evidence of community spread.”
All the preparation hasn’t come without consequence. Many hospitals rely on the insurance reimbursements for surgeries and services that they’re currently not providing.
Health care analytics firm Strata Decision Technology modeled the potential revenue loss from scheduling elective surgeries and the price tag for treating COVID-19 patients, and found that hospitals across the nation will lose an average of $2,800 per case, with many losing between $8,000 and $10,000 per case.
To maintain their budgets, some hospitals have had to cut down on staff not directly related to COVID-19 treatment. Becker’s Hospital CFO Report lists 181 hospitals nationwide that have had to furlough employees.
And the impact goes beyond hospitals. The California Dental Association is asking Congress for additional support to help dental practices make up for lost income due to COVID-19. Physician groups and community clinics are battling for their share of the $100 billion for hospitals in the federal stimulus package.
Hempstead, of the Robert Wood Johnson Foundation, said to keep the health economy afloat, insurance companies are going to have to step in and start paying doctors in advance for services that aren’t currently happening.
“There’s all kinds of antagonisms between providers and health insurers, but they definitely need each other. A health insurer has nothing to offer if there’s nowhere to get health care.”
Despite the anticipated economic challenges, the general consensus among health experts is that canceling some, if not all, non-essential medical care was appropriate.
“We did not know the numbers and we did not have data to make very precise decisions,” said Ko with the American College of Surgeons. “It was being done with the view of safety as a priority. Stopping elective surgery in preparation for a crisis pandemic, in my opinion, was the right thing to do.”
Still, there are millions of Californians like Gordon wondering about the long-term repercussions of this strategy.
“I know that my doctors, they’re doing the best they can in these difficult situations,” she said. “And I wonder, as we think about the second wave and this potential for COVID to come back very strong in the fall, will our health care providers and our health care system be more prepared so that if someone is in my situation in the fall there’d be clearer guidance?”
A New Course Of Treatment
The one medical service Gordon has been able to access during her recovery is physical therapy.
She’s been diligent about it. She wants to be able to care for her three-year-old son, Diego, without significant upper body pain.
“Just getting up and running around with him has been very difficult,” she said. “Sleeping is painful. There’s just a lot of fatigue and discomfort in the initial few weeks … the physical therapy helps a lot.”
Her sessions happen through “telehealth”, or a form of video conferencing that allows providers to conduct appointments virtually. It was gaining traction before COVID-19, especially in rural areas where health care providers are few and far between.
Dr. Sumana Reddy with the Acacia Family Medical Group in Salinas dove into learning this technology right as the COVID-19 threat emerged. It’s now the primary method of treatment at her practice.
Reddy isn’t sure yet whether insurance companies will reimburse telehealth services at the same rate as in-person care, but she’s hopeful that health plans will be generous, and that federal assistance will come through.
Still, telehealth doesn’t reach everyone, especially older people or low-income patients who don’t have computers or reliable Internet.
“We will have them, if technology fails, come into our parking lot and talk to them while they stay in their cars.”
Helms, with the chronic care coalition, said the rise of telehealth is one of the biggest positives to come out of COVID-19. But she still worries about people who need ongoing care and aren’t able to access the web.
“They’d have to get a letter - can they walk out and get their mail?” Helms said. “What we don’t want to find out is people are dying in their homes because nobody’s checked on them.”
Reddy says it’s crucial that doctors communicate with all of their patients to make sure their needs are met. She’s currently providing some reproductive health care and other services.
“We do everything that’s needed and we’re putting off non-needed procedures,” she said. “I don’t want women to go without birth control devices, so it may be IUD’s. It might be needed skin biopsies. We’re customizing to the needs of our patients one by one.”
Reddy is currently giving immunizations for children under age two. As restrictions loosen, she plans to invite in school-aged children who need their shots and adolescents who need their boosters and HPV vaccines.
“I’m very concerned that these patients might be undervaccinated and then we’d face other illnesses as a consequence, so that’s number one.”
More Than Medical
When Fay Gordon made the decision to schedule her double mastectomy for Mar. 13, she didn’t think COVID-19 would be a problem.
But as the date inched closer, she started to fret that it would be postponed. She had intended to lop off her long brown hair because lifting her arms to tie it back would be painful after the procedure, but she canceled the cut to limit her own exposure.
“I really did not leave my house the full week before surgery because I was so worried about contracting something and then having the surgery be canceled,” she said. “My big goal the whole time was to get through surgery and I’m really grateful that that happened.”
Five weeks later, her old hair is something familiar. But the two incision scars under her breasts still feel foreign.
“It’s not something most 30-year-old women are discussing, what happens when you have your breasts removed and how do you get them back?”
Surgeons removed all of the tissue from both her breasts, and then inserted tissue expanders. Over the course of several months, a plastic surgeon will fill those with saline to prepare the skin for permanent implants.
Gordon found out this week that her first fill-in will happen in May, though she’s read that it usually happens much earlier.
“I’m hopeful that this will be essential, they will be scheduled, they will move forward,” she said.
She says not knowing when the eventual surgery for the permanent implants will be has thrown off her timeline for having a second child.
“I don’t know when that could possibly happen because I don’t know how long I have to wait for the next surgery, and that’s deeply unsettling,” she said. “That is not how I envisioned this part of my life going.”
But still, she’s grateful to have gotten through the initial surgery and to be on a path forward.
“I feel a little silly being frustrated that my reconstruction is delayed,” she said. “But then I have to remind myself this is a part of my body and a core part of who I am. This is about restoring myself.”
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