Emily Lipstein lived with 10 years of debilitating, unexplained chronic pain before she finally received a diagnosis — endometriosis — and was scheduled for excision surgery. But when the pandemic hit, her surgery was deemed nonessential and indefinitely postponed.
“It felt like everything I’d been looking forward to with my health just evaporated into thin air,” Lipstein told Vox. In the months she waited for a rescheduled surgery, she had to pay for an extra MRI scan and experienced mental health issues, for which she was prescribed antidepressants.
Around the start of the Covid-19 pandemic in March 2020, the US federal government told health providers to postpone elective surgeries and “nonessential” medical procedures. These cancellations and delays, which affected everything from hip replacements to cataract surgeries to colonoscopies, were meant to conserve health care resources and minimize exposure to Covid-19. More than 100 hospitals have again resorted to this strategy in recent months because of the delta surge.
For the thousands of people across the country who were and are awaiting important medical care, these indefinite cancellations have been devastating. Experts and patients told Vox that the perceived importance of a given procedure is largely up to interpretation — as well as the whims of local politics.
“The term ‘elective care’ can be misleading,” said Joseph Sakran, a trauma surgeon at Johns Hopkins Hospital who performs both elective and emergency surgeries. Many people may assume that elective surgeries are unnecessary or cosmetic, but doctors use the word to describe pretty much any procedure that can be scheduled in advance. When officials hit pause on huge swaths of the medical system, some patients are forced to “prolong their suffering,” Sakran said.
The term “nonessential” often devalues care for women, LGBTQ people, and the chronically ill, said Virginia Kuulei Berndt, a medical sociologist and professor at Texas A&M University. “Some illnesses are prioritized less than others, and their corresponding treatments are deemed less urgent,” she said.
As a medical sociologist, I research how the binary system of “lifesaving” versus “elective” care is used and abused, and how these categories worsen social inequalities. The current system is supposed to help doctors triage, helping patients in dire need come to the front of the line. But labels have big consequences in health care: They can deem a condition worthy of medical treatment, drastically affect the support insurance companies will offer, and even stigmatize entire identities.
While we continue to hear calls to halt nonessential care, it’s a critical moment to ask: Who decides what counts as essential health care? And what happens when your care is deemed unnecessary? It’s time to move from a binary choice to a model with more tiers, which would capture quality of life and mental health and codify devalued forms of health care as nonnegotiable.
Labels like “nonessential” and “elective” can be inaccurate and misleading
Data shows that more than 90 percent of US surgeries are considered elective or nonessential. Collectively, they bring the nation’s health care system between $48 billion and $64 billion of revenue per year. This is why so many hospital systems struggled financially in the early days of the pandemic: While beds filled with Covid-19 patients, many profitable services ground to a halt.
Yet the definition of essential care has varied not only by health care provider, insurance company, and hospital system, but also by the state, city, or town that a person happens to live in. Some conditions are clearly emergencies, such as a rupturing appendix. But “nonessential” does not necessarily mean something purely cosmetic like a rhinoplasty or tummy tuck. During the pandemic, Sakran said, he has had to postpone surgeries to repair hernias that impede people from comfortably eating or walking.
The logistical difficulty of defining essential care has been “an ongoing challenge for insurance companies,” said Jesse Ehrenfeld, a physician and LGBTQ health advocate who chairs the American Medical Association board of trustees. It “leads to a lot of individual decision-making happening that is inconsistent.”
Without a widely accepted definition, the focus tends to be on risk of immediate death, while other facets of health aren’t factored into the necessity equation. In some cases, providers, insurance companies, and government agencies have latitude to decide whether a procedure is essential based on cultural beliefs or political agendas.
Insurance companies also ask patients and providers to prove the necessity of a procedure or medication, using a controversial bureaucratic process called prior authorization. Designed as a cost-control tool, this approach adds 16 hours to the work week of the average US physician, according to a study conducted by the American Medical Association. The administrative hassle and wait times can lead to patients giving up on getting the care they need.
Existing categories are failing women, LGBTQ people, and the chronically ill
In the US, access to high-quality care already depends too much on a person’s social status and ability to pay — and when certain care can be deemed nonessential, these gaps in access grow wider.
Leigh Senderowicz, a health demographer at the University of Wisconsin Madison, describes the ambiguity around essential care as “a fissure” that allows groups “to pursue whatever existing agenda they have.” Abortion is one prominent example, said Senderowicz, whose team has researched reproductive autonomy during the pandemic.
While some groups have used the pandemic as a reason to restrict abortion, others pushed for increased access through telemedicine appointments for medication abortion. These groups used the same word to demand very different health policies.
I first grasped the problem with the words “elective” and “nonessential” during research interviews with over 100 hysterectomy patients. Hysterectomy, or the surgical removal of the uterus, is the most common gynecological surgery outside of pregnancy-related issues in the United States. While around 10 percent of hysterectomies are performed to treat cancer and may be classified as emergencies, the overwhelming majority are classified as elective procedures, whether they’re gender-affirming care for trans patients or aim to manage a chronic reproductive illness.
While hysterectomy doesn’t immediately prevent death in these cases, timely access to this surgery can have a vast impact on a patient’s quality of life, mental health, and ability to attend work or school. The reason these procedures are deemed elective is not that they aren’t urgently needed, but that the underlying condition will not immediately kill them. The words “elective” and “nonessential” create additional obstacles when insurance companies reject claims or a hospital blocks a physician from providing a hysterectomy.
Jordan, a Massachusetts resident who asked to be identified by a pseudonym to protect her privacy, has experienced debilitating chronic pain and bleeding since she was a teenager due to adenomyosis, an illness that impacts the lining of the uterus. Her adenomyosis led her to drop out of college and move in with her parents, and she spends most days managing her symptoms. After years of seeking diagnosis and relief, she found a physician who finally presented a viable solution: hysterectomy.
Then the hospital intervened, Jordan told me, on the grounds that it was an unnecessary sterilization procedure. “The hospital does not see it as medically necessary, despite my surgeon specifically telling them that it was for quality-of-life purposes,” she said. “No, it won’t kill me, it’s a benign disease, but I might kill myself because I have it. And still, they denied it.”
Her doctor even suggested she leave the state, Jordan said, despite its reputation for progressive policies and leading medical care, because hysterectomies are more commonly performed in other regions, such as the South. Many patients won’t have the money or means to travel between states.
Gender-affirming care for trans people is also “viewed by some as unnecessary or low-priority, [resulting] in inequities becoming even more pronounced,” said Jesse Ehrenfeld. For a population that’s already affected by a shortage of specialists and big gaps in research, the nonessential label is an additional obstacle to what Ehrenfeld and other public health experts view as lifesaving care.
Ash, an agender person in Pennsylvania who requested a pseudonym to protect their privacy, for years wanted a hysterectomy to affirm their gender, but said that many doctors deemed it an unnecessary procedure that wouldn’t be covered by insurance. A doctor who finally agreed to the surgery, they added, said it would be easier to get it approved if it was classified as treatment for endometriosis, rather than as part of trans health care.
“He told me, ‘Listen, we’re gonna fill out the paperwork to say ... that you probably have endometriosis,” Ash said, paraphrasing the doctor. “This is what we have to do for insurance.” Their insurance company seemed to classify their hysterectomy as elective or cosmetic, Ash said, and coverage for the procedure seemed to depend on finding a doctor who would misrepresent the reason for the surgery.
When the meaning of a procedure varies so drastically by location and physician, and leads patients and doctors to lie to insurance companies, we should consider overhauling the system.
A new system could classify medical care by its urgency, whether or not it’s an emergency
The current way of defining essential health care is failing many patients. While the current designation is either/or — based on whether a patient is immediately at risk of death — our actual experience of health has many shades and subtleties. Doctors and health officials need to consider the impact of medical care on a person’s quality of life, mental health, and ability to work, as well as the impact on families and communities.
The best alternative to the binary system is a tiered framework, which would group different types of care based on varying degrees of urgency. For example, health systems could adopt three tiers: emergency, intermediate urgency, and routine. In this model, emergencies would still describe risks of imminent death or severe harm — such as a heart attack — and routine cases would refer to primary care, preventative screenings, and genuinely cosmetic procedures.
It’s the middle tier that has the greatest potential to improve and even save lives. This tier includes acute cases that aren’t life-threatening but require attention within 24 hours, such as a broken bone or a wound that needs stitches. But the medical care I’ve described in this article, from trans health care to abortion, also has intermediate urgency: It may increase mortality risk, reduce quality of life, or negatively impact mental health.
While a condition like chronic pain might not pose immediate mortality risk, the daily toll can have detrimental impact on one’s mental health and ability to function across all areas of life and work. In the case of trans patients, there is substantial evidence that access to gender-affirming care, including access to hormone replacement therapy, can save lives by improving mental health and by reducing suicide rates. Research also shows that when people can’t access abortion, their financial, physical, and mental health suffer. These elements of health, in addition to immediate risk of death, are considered in a tiered system of urgency.
This additional category would make it harder for local officials to make sweeping decisions that postpone or cancel a wide range of needed care. A tiered model would work best with proper oversight by public health experts and clear guidance about each type of care, to prevent the devaluation of historically sidelined care as “low urgency” or “routine.”
Without such standardization, Ehrenfeld said, legislative bodies can restrict access to care and put physicians in a bind — making it difficult for them to “act in the best interest of their patients and follow the evidence-based guidelines.” Any system that fails to define what kind of care is nonnegotiable leaves open the possibility of discrimination against stigmatized patients.
The pandemic has laid bare many gaps in the American approach to public health. Some have widened in the past year and a half. But now that we’ve seen the massive impact of delayed and canceled care, we have a big opportunity to fix a longstanding problem. We should change the way we categorize and prioritize different types of health care, and move toward a more holistic understanding of health and well-being.
Kuulei Berndt aptly summarized the problem before us. It’s fixable, as long as we have the will to solve it. “Nonessential does not mean it doesn’t need to happen,” she said. “Elective does not mean superfluous.”
Andréa Becker is a medical sociologist, researcher, and writer. She is a PhD candidate at the CUNY Graduate Center in New York and teaches sociology of health at Lehman College.