Before a recent hospital visit, Christine Link requested that her healthcare providers wear masks because of her autoimmune disease and medications that further suppress her immune system. A phlebotomist initially refused her request, leaving her feeling “shocked, scared.”
Escalating her concern to the Mass General Brigham’s patient advocacy office, she received this response: “While the request by a patient to an employee to wear a mask is not an ADA-related accommodation, it is a patient-centered and trauma informed best practice, and we encourage patients to make this request with the provider who is ordering the testing. The provider would determine if it would be in the patients’ best interest clinically to have staff wear a mask while interacting with the patient. Then they would need to communicate the decision to all staff providing services to the patient, such as phlebotomy staff.”
The patient advocate’s response left Link feeling, “foolish for thinking that Mass General Brigham would actually care enough to follow the law regarding reasonable accommodations. Instead I was gaslit about my needs, and it was insinuated that my issue was actually mental illness, and not that I am immunocompromised.” She added, “Each time I have an in-person appointment, I have to go through being made to feel as less than any other human being as a result of my disabilities, bullied, and forced into unsafe care as a condition of getting the healthcare I need.”
Link is not alone. She is one of the many patients who reached out to tell me about how the refusal of this simple ADA accommodation is ruining their lives. One of the most worrisome bits of fallout is that many patients now fear they will get Covid-19 in the hospital or medical office. They are delaying getting medical care, including cancer screening and infusions of drugs, putting off vital appointments. This risks seriously damaging their health.
Link knew that the ADA includes being immunocompromised as a covered condition. She is also more determined than some other patients. She called the Department of Justice’s ADA line and filed a complaint with the Massachusetts Attorney General’s office in October, adapted from one made available by attorney Matthew Cortland on their Patreon page. She has not received any response from Massachusetts beyond acknowledging her submission. She has since written her state house representative, senator and governor, without getting any help.
When I reached out to MGB about its policy, I was told, “While in certain limited circumstances, wearing a mask or other Personal Protective Equipment may be an ADA accommodation, it is generally not.” The nurse advocate added, “This will be our last communication on this subject with you.”
One patient who asked for an ADA accommodation at another hospital says she woke up postoperatively to find herself unmasked. So were some of the nurses. She had tested negative for Covid-19 before her admission and became ill shortly after that. Hospital-acquired Covid-19 carries a higher mortality—33% in one study and 10% during the Omicron wave. This is from worse underlying disease (e.g. cancer, CRF, immune status and generally older patients).
There are other recurrent themes. Some patients complain that they have gotten a considerable runaround rather than a frank denial — “You asked the wrong person” for an accommodation, or “Go here” or there until they give up in frustration and exhaustion.
Being mocked or humiliated about masking by healthcare workers, including phlebotomists and radiology technicians, is traumatic. One patient experienced suicidal thoughts from the bullying. These healthcare workers are denying the patients’ experiences and far better knowledge of their medical problems, causing many to avoid further medical care.
Link challenged the patient advocate about allowing “its patient-facing staff to put their personal political preferences (let’s not pretend it’s something other than political) before that of not only patient-centered care and their preferences but before the health and wellbeing of the patient.” She added, “I highly doubt that hand washing is left up to the personal preferences of patient-facing staff.” She also noted that MGB’s policy violates ADA laws, which explicitly include immune system diseases.
Other patients expressed anger at policies like MGB’s which state, “Patients can ask, but providers determine when and if masking in a particular situation is necessary.”
Some patients noted that they felt safer during the pandemic when everyone in healthcare settings was masking.
One woman complained of a physician abruptly removing her mask to examine her without her consent. She felt assaulted.
A recurrent theme was frustration that medical staff are ignoring the science—that repeat infections increase the risk of long Covid, that everyone masking is safer than one-way masking, and that N95 respirators are more protective than leaky surgical masks.
Another major complaint is being asked to wait long periods in unmasked waiting rooms for appointments, whether in the hospital or medical clinics. Patients are angry that they are refused permission to wait outside and be called in when it’s their turn. If restaurants can give people buzzers to call them in, one would think hospitals could master the technology.
Vulnerable patients are rebuffed when they want other people in a waiting area to mask—being told, “We can’t tell other people to mask,” yet if there were a case of measles, they could do so. Similarly, in an oncology or rheumatology office with many immunocompromised patients, the staff’s “right” to go unmasked trumps the patient right to a safe environment.
Patients fear retaliation and dismissal from a medical or dental practice, especially when no other options exist. Pantea Javidan, a Stanford sociologist and attorney stressed the difficulties patients experience “due to a power imbalance with physicians. They depend on doctors’ expertise and can’t easily question decisions such as mask-wearing.”
The Legal Perspective
Julia Irzyk, attorney and co-author of Disabilities and the Law, notes that hospitals are “a public accommodation. They wouldn’t have the right to say we’re not going to mask in the surgery room.” She continued, “It’s unacceptable to put patients at risk for a personal preference, which is all that is.”
“They are wrong on both the ethics and the law,” Irzyk concludes. “What they’re doing is a violation of the ADA. What they’re doing is a violation of the AMA code. And they are also destroying any trust that their high-risk patients have that they have their best health interests at heart.”
Irzyk’s co-author, attorney and bioethicist Mark Rothstein referenced a highly cited article by Erica Shenoy, Chief of Infection Control for Mass General Brigham, that said that by obscuring facial expressions, masks negatively impact “human connection, trust and perception of empathy.” But, Rothstein says, the opposite is true. “When a healthcare provider refuses to wear a mask at the request of an at-risk patient, nothing can destroy trust more than that.” Rothstein adds, “One of the most important sections of the AMA code of ethics is section 10.015, which says the relationship between patient and physician is based on trust and gives rise to physicians’ obligations to place patient welfare above obligations to other groups.”
Doron Dorfman, L.L.B., J.S.D, an attorney at Seton Hall Law School, described the hospital’s stance as “a little bit outrageous.” He explained, “But if the hospital’s claim is that you cannot force a third person to do something to accommodate a person with a disability, that’s absolutely false as well. So many courts accepted the idea of a no smoking policy that requires other people in the workplace not to smoke as an accommodation. It’s very common to have people with food allergy that have an accommodation for other people not to bring allergic foods into the workplace or into school.” Similarly, regarding staff rights preempting that of the patient, Dorfman added, “There is not a right to refuse someone a disability accommodation.”
Wendy Parmet is a professor and expert on disability and public health law. She noted that hospitals all have translators now. “There should be some kind of analogous process” for patients who are requesting masking accommodations, she said, adding that a big problem with MGB is “that they don’t have the processes in place” to prevent this kind of problem. Once they have the procedures outlined, then all staff should be educated. “What we want is a training program and some procedures in place because your phlebotomist should not be left to think that they can make this decision on their own.”
Boston To The San Francisco Bay
The problem of getting healthcare providers to mask in response to their patients’ request is by no means limited to Boston. This type of refusal of disabled patients’ requests is also notably coming from University of California San Francisco, another leader in influencing policy.
Alice Wong is the founder and director of the Disability Visibility Project. She has multiple medical issues, including having a tracheostomy and a breathing tube in her neck. Wong recently required hospitalization in UCSF’s Moffitt/Long Hospital. She wrote a compelling essay in Teen Vogue, “Covid Isn’t Going Anywhere. Masking Up Could Save My Life.” After her January experiences in the emergency room and ICU, she wrote about her nightmarish experiences along with extensive recommendations for improving patient safety.
Senior and Disability Action, a community organizing group fighting for the rights of seniors and people with disabilities, has recently met with UCSF leadership to provide safe access to healthcare, especially for seniors and people with disabilities, who are being disproportionately affected by Covid-19. SDA’s Allegra Heath-Stout, director of emergent campaigns, said they have requested that universal masking continue after April, when the city’s health order requiring masking ends. UCSF also denies other Covid-19 safety-related accommodations, such as staff wearing an N-95 for particularly vulnerable patients or allowing immunosuppressed post-operative patients to recover in a separate room without unmasked patients.
SDA member Beth Kenny says they encounter similar problems at Kaiser Permanente. Kenny said their physician told them not to be inside with unmasked people, yet Kaiser does not allow patients to wait outside until being called rather than in crowded waiting rooms. Kaiser also denied Kenny’s request to have labs drawn at home by a visiting nurse, so they have risked their health by skipping monthly labs.
Another SDA member observed that what UCSF does “seems to really set the tone for the Bay Area and the rest of the country in terms of what precautions are taken.
Modest requests
What Christine and the other patients I’ve spoken with want seems eminently reasonable. MGB, UCSF, and others could start with a user-friendly system in place for patients to make requests. The ADA request should be readily visible to the staff—a flag on the patient’s electronic medical record or, in the old days, a colored tape on the patient’s chart.
As Link said, “I never thought that Harvard’s teaching hospital would care so little for lives like mine.” She surmises, “It’s the same kind of hostility and apathy that people with disabilities have long experienced that tells us that we are burdens, that we should pipe down and not concern ourselves with equity because our lives are not as valuable as nondisabled people.”