Decreased care.

Participants reported observations of decreased care in terms of less explanation, less interaction, and barriers in access to telehealth services among BIPOC patients and patients with disabilities. A majority of participants noted how lack of accommodations for communication resulted in less explanation of care. This was frequently observed among patients with limited English proficiency (LEP) because access to interpreter services was limited or not sought. One participant highlighted the complexities of caring for COVID -19 patient with LEP:

“It does create difficulties, especially as the care gets more technical and more complicated, to bring the information to the patient, because you’re so sick and you’re supposed to listen to the doctor or the nurse and to understand complex issues. And also then, you ask the person, well, what would you like to have done? How does he or she make that decision? […] it is difficult to take care of patients who have a language barrier on any given day, but I think COVID just adds to that dynamic just with everything else that’s going on.”

Lack of accommodation for communication was also observed with deaf patients or patients with cognitive disabilities. Participants highlighted ways that information such as discharge instructions did not get clearly communicated due to lack of accommodation. One participant noted the ways it impacted care especially when provider biases were added to the equation:

…when there’s not that direct transmission of information, there’s things that are lost, there’s things that are misinterpreted…Even something as simple as [with] COVID-19, you’re supposed to prone all the time whether you’re independent, whether you’re on a ventilator, you’re supposed to prone. And that message I feel like is often just brushed away because they’re like ‘that’s not that crucial to them.’”

Participants further shared concerns regarding their observations of providers choosing alternative ways to communicate (e.g., informal interpretation by staff, writing out for deaf patients) out of convenience or due to lack of resources. Participants noted that “[T]hings were not necessarily explained to the fullest capability" with such alternatives and that “messages weren’t coming across clearly.”

Several other participants noted the impact of communication barriers on patients’ healthcare experiences. One participant shared their observation with a patient with LEP: "[The patient] didn’t understand because he didn’t speak English…[it] didn’t impact his medical care, but it impacted him personally for sure…it did play a role in his care." For a deaf patient with LEP, the staff did not offer the necessary support: “he was just lost and confused with what was happening half the time because whenever he was…having a lot of trouble, people weren’t stopping to explain it very well to him." While these patients may have received the same medical treatment, their care experiences and mental health during their stay would be negatively impacted.

Decreased care was observed also in the form of less interaction with patients. In some settings where physicians communicated with COVID-19 patients only via phone, patients requiring accommodations for communication were deprived from routine physician visits or visits from specialists. This included people with LEP and people with cognitive disabilities such as individuals with dementia or Down syndrome.

"During the height of COVID, the majority of our physicians weren’t even going in the rooms, they were observing outside the room or making phone calls into the room with these folks who some of them, they couldn’t even understand English; or B, don’t even understand the concept of like picking up a phone and talking it on it anymore because their dementia is so bad or their cognitive impairment is so bad. So, absolutely, the time that those patients were communicated with, and things were explained, […] was limited."

In addition, participants observed healthcare providers explicitly expressing ableism and racism of BIPOC patients and patients with disabilities, evident also in less interaction with or differential treatment of these groups. Participants reported patients with disabilities or chronic conditions being avoided or treated unequally by healthcare providers primarily due to their internalized ableism. Participants noted how ableism overtly affected “individual level decisions” related to the care of people with disabilities and at times resulted in negligent care: "If someone comes in more chronically ill, or more disabled, the same efforts are not always put in." Several participants specifically highlighted the ways those with cognitive impairments were particularly vulnerable.

"They just didn’t want to give him [patient with Down syndrome] the time in his care that I felt like he needed and he deserved to make sure they were examining him properly, make sure that they weren’t missing anything with him. … it [was] kind of a neglective care like, ‘I’m not going to really pay much attention, he doesn’t really get it, he’s not paying attention to what I’m doing,’ was kind of the overall feeling I got in rounds which I did not love."

“I heard multiple staff members say that they were paying more attention to other patients than that patient [who was at risk of dying at any time] because they didn’t believe her to be likely to survive. And she was no different than any other patient other than the fact that she had trisomy 21."

Similarly, racism and race-based biases impacted the care of BIPOC patients. Healthcare providers’ biases, such as assuming higher pain tolerance in the Hispanic/Latinx community, resulted in different care: "They [the Hispanic/Latinx community] have higher pain tolerances’ is something I heard over and over again." "…I feel like people of color with their symptoms…sometimes they’re taken less seriously, there’s less compassion.” It was noted by several participants, however, that decreased care based on racism was held in check by providers’ fear of punishment and risk of loss of license.

Finally, decreased care due to issues with accessing telehealth services was frequently cited as a limited option for people with LEP and those with disabilities. One participant emphasized:

“There’s limitations in terms of access to technology. If you are visually impaired, can you log onto a computer or a phone to start a video visit with the physician? Then some people were not sort of—did not have enough technology literacy to complete that process.”

Another participant spoke to the limitations of telehealth from a language perspective, noting

“Most of our discussions surrounding telehealth and access to care [have been around] knowing that there are limitations from the technology end, from the language barrier, and just being able to read the instructions in English which is normally how they’ve been sent, of how to log onto a video visit, but we have a lot of patients who speak Spanish, who speak Polish…”

Delayed care.

In addition to receiving decreased care, participants also reported instances of BIPOC and people with disabilities experiencing delays in care. These delays were often attributed to the busy environment and additional resources required (e.g., staff, devices, interpretation). When discussing how language barriers affect delays in care, one participant stated:

[the] system is already set up to not automatically care for people who don’t speak English as their first language…[patients] get put back into the room with less information than…a patient who spoke English as their first language. And that leads to a barrier of care…it takes longer to see that patient and for them to get the attention that they might get if they didn’t have that language barrier.

Particularly, one person shared how a patient who will require more time due to interpreter needs would be seen later if they were deemed to be medically stable:

Basically if you’re going to use an interpreter, your visit’s going to take 2X as long because everything has to be said twice… when you see a patient, [if] you already know they’re stable, because the triage nurse has seen them and you can watch their vitals. […]. So, I think if you’re busy, […] you know it’s going to take you more time, so you hesitate a little bit more before you add that patient to your plate.”

Another participant expounded upon the same phenomena with an example from the Emergency Department of which patient assignment system was set up to allow avoidance:

I think the main thing that happens with the care decision is just it takes an ED [Emergency Department] to notice people because in the ED we choose our patients. We like watch the board and then we pick a patient. And you watch those patients sit there, nobody picks them for a while, the providers.

In other instances, participants emphasized the conscious and active nature of delayed care when working with patients with disabilities, particularly those who have physical disabilities or are obese: "with Down Syndrome, those kids tend to be very floppy, some of them…you need a lot of hands." For such patients, one participant said that people are often very thoughtful about when they’re going to go into the room because they know it will be a big ordeal…because it’s more difficult sometimes, it gets done at a later time."

The delayed care in ancillary services (these include physical therapy, occupational therapy, or respiratory therapy) that patients with disabilities received then often resulted in decreased care, as one participant stated:

“I think if they [ancillary service providers] know it’s going to be something that’s going to take a lot of time, they’ll either do it really early or really late. And if it gets done really late or if it gets scheduled really late, and sometimes other things take some time, then that person gets missed for the day.”

Participants shared how such delays in care contributed to patients feeling like “there’s nobody taking care of them” and overall experience care that was “less than optimal.”

Fewer options for care. Often times, patients who were BIPOC or who had physical or mental disabilities were given fewer options to care. When discussing this occurrence among people of color, socioeconomic status was often conflated with race. As one provider stated:

“I saw a lot of instances where options were not being presented to people of color. And they would fault those social economic factors as, like, rationale. But at the end of the day that is very unethical in my opinion.”

In response to a question regarding differences in care for COVID-19 positive people of color or those with disabilities, one participant shared this observation where less long-term treatment options were provided:

“Another instance that I witnessed, […] this patient was intubated. And normally what gets offered is a tracheostomy. And then what gets offered is an LTACH [Long Term Acute Care Hospital] facility if this patient is no longer going to be able to come off the ventilator. That was not offered to this patient. That was not an option. What was pushed instead was comfort care and compassionate extubation. That was very eye opening because that’s not how that normally goes. And so essentially, this woman’s life has ended, not on my shift but later that week instead of having options of what it is that she would have wanted.”

Provider bias.

Provider bias, particularly bias related to racism and ableism, was a major driver to differences in care described above. Such bias was evident in observations of certain provider attitudes and overheard comments. Participants recounted hearing conversations, often described as “side-conversations” occurring before and after care, which included blaming language, “trash talking,” and occurrences of labeling, generalizing, stereotyping, or making assumptions based on race, ethnicity, and/or presence of impairments. The intersectionality of these characteristics compounded negative attitudes toward patients. These conversations included expressions of frustration or irritation related to patients’ specific needs or cultural differences with patients as well as lack of compassion for a patient’s situation. For example, several participants shared providers’ statements about undocumented patients as “eating up resources”, characterizing them as a burden or as someone who is taking advantage of the system–“he’s being waited on hand and foot, who wouldn’t want that.”

Similar comments related to a patient’s socioeconomic status (SES) were also described by participants, particularly regarding a patient’s sanitation or barriers to discharge due to lack of resources or accommodations. One participant’s observation illustrates how the intersectionality of SES and racial bias results in discrimination:

“[One] instance I can think of was a Black […] woman, middle age, [and] she was homeless. [I didn’t see] overt racism, […] more microaggressions. She had lice, along with all the other COVID problems, so nursing are heavily involved in lice care for patients. [There were] just a lot of comments around her hair texture and difficulty with hair management and not so compassionate in terms of how they were approaching it. […] it was just a lot of like comments around ‘well, if her hair wasn’t so ratty’ and, ‘if her hair was just properly kept’, ‘If it wasn’t so unkempt,’ and just sort of things like that.”

Expression of irritation was also shown in observations of referring to expressions of grief among Hispanic/Latinx populations as “Hispanic panic” or describing Black/African American patients as “aggressive” or “crazy” due to communication style differences. Some participants also expressed frustration with differences in cultural and religious beliefs that impacted care decisions. For example, one participant shared the cultural clash with Hispanic caregivers who disagreed with provider’s recommendations of care:

“…family is very important and taking care of your family is what they do. I’ll see patients who are elderly who live with their children. That is just something that culture seems to really do. And so focusing on [I’m] taking them home, being with me, I’m going to protect them, I’m going to take care of them is part of it.”

Participants described additional evidence of racial bias, such as categorizing based on a patient’s race or “automatically grouping a person [from a different racial group] […] into ‘they’.” This resulted in negative patient-oriented comments providers would make based on assumptions about the larger racial or ethnic population the patient was a part of. One participant highlighted ways these assumptions were applied to insinuate that Hispanic/Latinx patients were at fault for contracting COVID-19:

“At the nursing station alone, it would be like, "Well, they cohabitate.’ ‘Well, they aren’t wearing their masks.’ ‘They aren’t staying home.’ […] This person comes in […] and the saddest part about all of this is that, they’re young […] and they are otherwise healthy, and all of a sudden, within two minutes, this nurse, or this NP, or this doctor knows exactly how they got here. […] And it’s, like, ‘you have no clue’.”

Finally, bias related to ableism was evident in “subjective assessment[s] of quality of life” that providers were observed to make with people with disabilities or chronic conditions, reinforcing beliefs that their lives are worth less or that being “less likely to survive” justifies less attentive care. Providers were also observed to blame disabilities or pre-morbid conditions for worse health outcomes as the patients’ fault.

“…I have heard statements that, basically, if that person was not as obese as he is, that this would most likely not be this severe right now. Or it wouldn’t be so many other components that were failing and would not create additional problems.”

Due to the “mortality rate of this condition in older adults” providers would also express frustration if an elderly person with pre-existing medical conditions took the last bed, illustrating how ageism intersects with ableism: “you could also sort of hear people say ’this person’s 85, they have advanced dementia. You know, do they get my last ICU bed?’”

As the pandemic wore on, participants shared bias against patients who were unvaccinated, which in some cases the majority of unvaccinated were people of color. Participants shared that “there is less compassion” and “significant bias” toward this population, compounding existing concerns for racial bias. They noted that while they did not believe this changed the care that was provided, it did change “the way that the care was delivered,” highlighting that the “conversations, not necessarily to the patient, but within the clinical arena, [were] different based on that.” One participant shared this observation:

“We had a patient who was African American […] Didn’t believe COVID existed, didn’t believe in the vaccine. He, I think, was treated unfairly. He kept saying this doesn’t exist, stop telling me I have COVID and they would just yell at him basically ‘you have COVID, you have to believe it.’ And he just refused to believe it. And so I do feel like that does lessen the compassion. He ended up coding four times and unfortunately, he did not make it. And so, I don’t know, I wasn’t there for the code and so I don’t know how his attitude was portrayed to the code team, but they talked about it multiple times like he’s a non-compliant patient. He doesn’t listen."

Fear of transmission (earlier during the pandemic).

Participants shared the fear that existed among providers, particularly early on in the pandemic when there was less understanding of the virus, which also contributed to differences in care, particularly issues with less care or avoidance of the patient all together. This fear resulted in providers declining to use translation services because they “were afraid to pick up the phone” or care being done faster than normal to reduce exposure. One participant described their observations related to this:

“There’s the putting on all the PPE and going to see a patient and then just basically like trying to do what you need to do and then get out of there. I think that was really the—that was the recurring pattern I think for everyone out of fear of the unknown, concern for our well-being and just being afraid of basically getting potentially exposed.”

Organizational policies related to COVID-19.

Hospital COVID-19 policies such as restricted family visitation, speaking with providers via electronic devices, and VIP patient placement (patients with certain connections or status would be placed preferentially on established units as opposed to temporary COVID-19 units where there was less privacy and fewer resources) contributed to issues of inequitable care. The inability to have family or caregiver support in the hospital amplified challenges related to interpretation, because as one participant noted, “95% of the time [a patient’s] family translates for them.” Outside of interpretation, patients with LEP often relied on family members in understanding their care, and without this support one participant said “you just have this person laying there confused and doesn’t know what’s happening."

Family members would also often serve as advocates if the patient was not familiar with the healthcare system or required physical, mental, and emotional support or to ensure high quality care: “if a person of color has an advocate…I feel like you see a little bit of change in behavior from a medical provider because there is that additional accountability.” The need for having an advocate was also insinuated in a comment on differential power dynamics in the provider-patient relationship which directly influences how comfortable patients feel communicating with providers:

“Patients don’t say what they think to the providers, and instead only share them with their family…It just makes me question how do they perceive us, when we walk in in our gear and equipment, and especially when the doctor visitations are with all these doctors this, doctor that. It is a presentation of power over this individual that is lying in bed.”

While a few providers stated that they allowed caregivers to stay with patients with cognitive disabilities, participants shared that the extra steps taken to acquire approval were perceived as an additional burden by the providers. Participants also described the concerns for patients with disabilities who didn’t have a family advocate present. The lack of interaction between patients and their families caused significant emotional distress with families.

“I would say my direct exposure would be more with the disabled population who, really, for the most part, was unable to advocate for themselves at all during COVID. And you don’t have your daughter, your son, your husband, your wife who normally is by your side every time you’re admitted to the hospital, who’s asking the questions that need to be asked, who’s questioning this medication decision or this test decision, or consenting to procedures, or who is the eyes and the ears.…And so, absolutely complaints about continuity of care, consistent communication with physicians, decision-making, "Why has he not gotten out of bed in two weeks?", "Why is his breathing like this today?" […] Of course, that brought a lot of complaints, and anxiety, and anger. […] And they weren’t allowed […] to even just come and stand outside the room; we had a no-visitor policy in our entire hospital whether you were COVID or not. […] I mean there was nothing unless we Zoomed with you.”

There was also often mistrust or disagreement related to what choices for care were being made, because the family was not able to be present and see the care first-hand.

““family members could not come into the hospital, they could not see their critically ill loved one except on a video screening. So there were a lot of underlying mistrust, it brought it like way up to the surface. I don’t think it was fundamentally different than what was there already, […I think it was usually a little bit more covered over. And that was very in your face. So I had […] multiple family members ask me when we do video updates […] if I was going to take away their loved one’s ventilator in order to allocate it to somebody else. And was I going to do that because they were poor or black or–I remember very vividly family members telling me–in New York City family members telling me that ‘don’t take away my loved one’s ventilator, we will find the money to pay you.’”

Some participants highlighted policies regarding patient placement and how this contributed to inequitable care of BIPOC patients. Several participants discussed the VIP patient phenomenon where VIP patients, who were majority White, received better care where "more time was spent at the bedside by the nurses, more consultants tend to be involved in their care.” One participant noted racial inequity while explaining the differences in treatment between transformed temporary ICUs and conventional ICUs.

“Those [transformed] units didn’t really have the same resources as, like, conventional ICUs like a nurse ratio of one to two patients. A respiratory therapist that’s always available, a pharmacist on hand, a nutritionist. And, kind of, patients that were sent to these transformed COVID-19 ICU units received decent care, but I would say probably not the same level of care as those in the conventional ICU. And I did notice that most of the patients in the transformed ICUs were not Caucasian; they were of different ethnicities and tend to be of lower, of socioeconomic status."

Lack of work setting resources.

Lack of resources included lack of adequate staff, PPE, interpreter services, funding, and collaboration across systems. Lack of staff affected the amount of care each provider had to provide, especially for nurses. Inadequate staffing had a direct impact on how providers perceived patients who need accommodations and resulted in inadvertent discriminatory treatment due to the “logistics” required to provide accommodations. As one participant noted:

“And the interpreter was more used when you actually had time to use it, and people weren’t doing; it’s oftentimes a thing when somebody was having something immediate happening to them because they were just trying to get through that situation….And I just feel, like, because of COVID-19, nobody going in the room, you were, kind of, trying to do 20 things at the same time because you were the only person.”

In addition to lack of staff and time, many hospital services also had limited availability of in-person interpreters before the pandemic and worsened with COVID-19. Staff mainly had access to interpreter devices, such as tablets or telephones, which were either limited in their availability, took time to use, and/or at times did not work due to the system being overwhelmed. In addition, the process for disinfecting the equipment between patients was also time intensive.

Work setting related issues were more commonly reported among providers in emergency medicine and critical care settings where resources and caseload were significantly affected by surges. Lack of collaboration across systems was also highlighted as contributing to decreased resources, staffing shortages, and systemic stress overall:

“The organizational policies of New York are really different than in Washington State. And while the healthcare systems in Washington State don’t get along all the time,[…] they get along a lot better than the hospital systems in New York State and New York City do. And so I think you already had a relationship that was probably a little bit adversarial–competitive I should say. And it’s a lot more systems and I don’t think there was the same, there wasn’t the same coming together of a mutual aid.”

Burnout and moral injury.

Providers reported moral injury (a betrayal of one’s value and belief for not being able to help patients) and all elements of burnout including frustration, futility (people not getting better) and exhaustion [34, 35]. Moral injury was closely related to lack of resources and the busy environment as well as the emotional hardship related to COVID-19 specific care:

"[COVID] has made it so that caregiving in general has just been a lot harder emotionally….no one is really there for them at the end of their life. And it just feels like all of those things that we were taught in nursing school to do to provide family-centered care aren’t there. And it’s very hard, in general, to be watching people who are young dying, and to know that they’re dying alone, and you’re not actually able to help support their family.

Burnout seemed to have a detrimental impact on care of BIPOC patients and patients with disabilities particularly those who required accommodations. Participants described when care became increasingly complex and required more time and resources but continued without “any positive outcome” it was “hard to stay positive.” This emotional distress and burnout often resulted in more explicit expression of bias.

"It is hard to get out of [trash talking about patients] once you’ve been doing it for a while and that is reflective for many nurses. Initially as a coping mechanism and then as an expression of burnout…talking shit about your patients is universal. Not that that makes it okay, but yeah."

Several providers showed evidence of burnout in the way they expressed anger and lack of compassion for unvaccinated patients (particularly before the omicron variant) who, as stated earlier, tended to be BIPOC patients in some areas.

“If you didn’t get vaccinated and you get it [COVID-19] shame on you. That’s your big scarlet letter right there. This is not the politically correct answer, but I have no problem being judgy at this point. I’ve seen too many people die miserable, horrific deaths alone. Like if you didn’t get vaccinated and you get COVID sucks to be you doesn’t it? And that is definitely a reflection of burnout."