By Rose Hoban
As the coronavirus took hold in early 2020, New York City hospitals were overwhelmed.
Patients gasping for breath filled gurneys in emergency departments while doctors, hospital executives and public health officials wondered if they would have enough ventilators to keep critically ill people alive.
If things got worse, doctors in some of New York’s hardest hit hospitals would have to decide who would get a ventilator, and who wouldn’t.
Who would it be? The 38-year-old with diabetes or the healthy 75-year-old with a little memory loss who both needed that last breathing machine? What if the choice were between a 38-year-old with a developmental disability who’s stable on a ventilator and a 65-year-old smoker with a so-so chance of survival?
Now that COVID-19 vaccines have begun to inject optimism back into our lives and pushed those images of gurneys in crowded hallways further from our memories, returning to that point in time a year ago reveals how protocols were developed to guide such decision-making and the fight to ensure that biases and misconceptions did not disadvantage people with disabilities and people of color.
In North Carolina, health care leaders watched the New York crisis unfold with a mix of horror and apprehension that Tar Heel doctors might soon be facing the same sort of heart-rending ethical questions.
“First of all, hospitals chronically, in my experience, are imperfect places for the care of our loved ones,” said Betsy MacMichael, executive director of First in Families North Carolina, an advocacy group that serves people with disabilities and their families.
She’s also the mother of a 28-year-old woman who is blind and has a profound and progressive neurological disability similar to cerebral palsy.
“You add that disaster communication is not always the strong suit of our loved ones means that we parents or caregivers or siblings, or whoever this familial advocate is, plays a pivotal role in the care,” MacMichael added.
MacMichael’s daughter is able to live independently but can’t always explicitly express what she needs. If she’s in the hospital, MacMichael and her husband usually are there to advocate for her during the stay.
“We always stay in the hospital with her if she has to go to the hospital. We’re always on top of just chasing down nurses if something’s going on,” she said. “It’s terrifying to think of her being alone there, in that kind of environment without us, added to this thing… [of] the undervaluing of human beings with disabilities.”
MacMichael, and others, worry that bias — conscious or otherwise — could enter into decisions about who gets care when there are few resources.
“People with disabilities don’t believe they’ll be treated as fully human when they’re seeking health care,” said Corye Dunn, an attorney for Disability Rights North Carolina. “They’ve experienced discrimination and expect to experience it again.”
Looking for guidance
In March of 2020, state Health and Human Services Secretary Mandy Cohen asked the North Carolina Institute of Medicine, the North Carolina Medical Society and the state’s hospital trade group, the NC Healthcare Association, to convene a task force to help the state write protocols for what to do if demand for treatment outstripped the resources available.
A variety of stakeholders — physicians, hospital representatives, people with disabilities and their advocates, older people, advocates for racial and ethnic minorities, ethicists and more — participated in a several-hours-long video call to hash out guidance for hospitals and doctors.
Although advocates from the disability, aging and mental health communities provided input, the final document was drafted by representatives from the Institute of Medicine, the Medical Society and the hospital group. They eventually punted, though, putting forward a protocol developed at the University of Pittsburgh Medical Center.
Requests to speak with the members of the Medical Society who helped draft the final decisions were not answered. The Healthcare Association provided a spokesperson who was not involved in drafting the language in the document. After a discussion, she concluded that she could not speak to the content of the document.
When advocates saw the final draft, they warned that older patients and people with disabilities could face worse care, or, potentially, no care at all. They worried that these patients could be at a disadvantage once they were in a hospital.
“In a perfect world… you need an advocate there,” MacMIchael said. “But then when you add to it, that there might have to be triage of care between a Duke basketball star and my daughter with cerebral palsy, plus legally blind, who’s gonna get the care, you know?”
Disability Rights North Carolina first sent a letter to Cohen. Subsequently the organization, along with The Arc of North Carolina, filed a complaint about North Carolina’s guidance with the federal Department of Health and Human Services’ Office of Civil Rights.
North Carolina wasn’t the only state where concerns were raised. Nationally, advocacy organizations voiced similar issues with protocols in a number of states. In early April, The Arc, a nationwide organization that advocates for people with disabilities, sent a letter to hospitals around the country reminding them of their obligations under federal law to protect the rights of people with disabilities.
“These laws apply to hospitals experiencing a medical equipment, bed, or staffing shortage during the COVID-19 pandemic, as well as state policies concerning how resources should be allocated in the event of such shortages,” the memo said in part.
The federal Office of Civil Rights started working through complaints in other states, resolving many, but not North Carolina’s.
In the late spring of 2020, though, North Carolina successfully “flattened the curve,” and the moment of crisis seemingly had passed.
Then, things got bad in the winter.
On Nov. 15, 1,423 COVID patients were in hospitals, with more than 360 of them in intensive care units. Over the following 60 days, coronavirus cases ballooned to more than 11,000 new diagnoses in a day, with close to 4,000 people hospitalized. By mid-January, some 880 people were intensive care units, and the number of ICU beds was dwindling.
In December, health care researchers warned that North Carolina could run out of beds sometime in early 2021.
Advocates for people with disabilities again raised the alarm.
“We were playing a terrible game of chicken with respect to our ICU beds and staffing in the state,” Dunn said. “At one point, there were fewer than 20 ICU beds available in the entire catchment area served by the Duke Healthcare system.”
In other parts of the state, hospitals converted more beds to COVID care. Warnings went up about hospitals reaching capacity. In Boone, a medical charity opened a tent hospital to help address the crushing demand.
In mid-winter, Disability Rights reached back out to the federal officials, to let them know that the policy the organization had found problematic in North Carolina remained in place, even as the state inched closer to implementing it.
And in the final hours of the Trump administration, leaders from the Office of Civil Rights nudged North Carolina to make changes to the state’s protocol.
Disparities loom
Hospitals, health care providers and medical ethicists have long thought about the difficult choices that need to be made when there are few resources.
In the military, the practice of triage is used to separate and prioritize patients who are likely to survive and need the most help the soonest from those who are too injured to survive, despite best efforts.
Doctors and nurses in emergency departments do the same thing on a daily basis, especially in crowded settings, having some folks wait while others get treated quickly.
In some parts of the country, some of these triage decisions were pushed onto non-physicians in the field.
In early January, in Southern California, EMTs were instructed to only administer oxygen to patients with very low blood oxygen saturation and not resuscitate every patient they were called to help, particularly those who had little chance of survival. (Often, EMTs deliver patients to hospitals even as they continue resuscitation efforts.)
“I worry when I hear… that crews on ambulances – so paramedics, and EMTs – are being asked to decide in the field, whether or not somebody is saveable,” said Richard Besser, a physician who is head of the Robert Wood Johnson Foundation, when asked about incidences of care rationing that were reported to be taking place.
Besser’s organization thinks broadly about issues of equity in health care.
During an interview with North Carolina Health News, he noted the kinds of decisions made in California were prone to implicit bias.
“I worry that those kinds of decisions in the field could result in lesser standards of care or less access to care for people of color, and for people with disabilities,” he said.
Besser noted that throughout American history, people of color and people with disabilities have received a different standard of care, often a lesser one.
“We need to make sure that as crisis standards of care are implemented, that these standards of care represent a healthcare system that equally values people of all races, equally values people of all abilities and disabilities,” he said.
Unconscious bias
Some began to worry about whether health care providers were not being as aggressive with the care for the most vulnerable.
It’s happened before.
One only needs to ask survivors of North Carolina’s well-documented eugenics program, some of whom are still alive. Or talk to members of the Black community, for whom the legacy of the infamous Tuskegee syphilis study looms large.
But it’s not just a problem of the past. Some of these attitudes that allow health care providers to discount the lives and experiences of marginalized people are baked into modern medical school curricula and practice:
- Research has shown that Blacks in the U.S. are routinely offered pain medication less often than whites.
- Multiple studies find many health care providers display persistent bias around obese and overweight patients, conditions that put people at higher risk from COVID.
- A survey published in the Proceedings of the National Academy of Sciences in 2016 found that white medical students maintained “beliefs about biological differences between blacks and whites — beliefs dating back to slavery — [that] are associated with the perception that black people feel less pain than do white people and with inadequate treatment recommendations for black patients’ pain.”
- In a noted study conducted in the early 1990s, researchers found medical personnel rated the potential quality of life of patients who might arrive at the hospital with a severe spinal cord injury that would leave them disabled. Four-in-10 of the health care personnel said the patients would have a poor quality of life and only 18 percent of the providers surveyed said they would want to survive such an injury. Some of those providers argued that the measures taken to save lives right after an injury were “too aggressive.”
- Those same researchers then asked the patients with the spinal cord injuries to rate their lives post-injury. More than 90 percent of them responded that they were glad to have survived their injuries and said life was good.
Fast forward to today and a survey of doctors done last spring amid the pandemic.
Of more than 700 physicians across the U.S. researchers found that “82.4 percent said that people with significant disability have worse quality of life than nondisabled people.” Only about 40 percent of those doctors surveyed felt confident that they could provide the same quality of care to patients with disabilities that they provide to others.
Meanwhile, just 56 percent strongly agreed that they “welcomed people with disabilities at their offices,” even though the Americans with Disabilities Act requires equal access to health care.
A study done by researchers from Johhs Hopkins University in November confirmed disability advocates’ worst fears.
The researchers found that of all the people who’ve had COVID-19, those with intellectual and developmental disabilities were more likely to die. Their death rates after contracting COVID were higher even than seniors with Alzheimer’s disease and those with cancer and heart disease.
Narrow lens vs. wider picture
People with disabilities, people of color and their advocates point to such research and many other studies as evidence of bias against them.
“The perception of people’s quality of life is based on enormous amounts of biased information they get from training, from the media, from the narrow view that ‘I know about someone with X condition because I’ve met one person with X condition,’ and not looking at the wider picture,” said Jennifer Mahan, vice-president for governmental affairs for the Autism Society of North Carolina.
The bigger life challenges for people with disabilities often are lack of access to services, Mahan said, which can make it seem like their lives are less fulfilling.
“If people get appropriate support and they aren’t left to wallow in poverty and are left with an inability to connect with their communities and their families, then yeah, of course they have a poor quality of life,” she said.
That no doubt plays a part in why people with disabilities are more likely to end up in an emergency department because they often lack coordinated care, according to a study sponsored by the National Institutes of Health published in 2013.
“I’m not unempathetic about medical professionals and administrators having to think about real-life decisions,” Mahan said when asked about the protocols for COVID care. “But to dismiss entire groups of people just because they have a disability is wrong.”
In an article in the North Carolina Medical Journal, physicians and officials from Novant Healthcare ran simulations on decision making using the guidance. Their study found that different groups of providers came to consistent conclusions about who would and would not receive resources in the event of shortages.
But that did little to quell advocates’ concerns.
Long-term survivability
When the Institute of Medicine came out with its recommendations last spring, some lines in the protocol practically jumped off the page at folks with disabilities and their advocates.
The document referred to “giving priority for critical care resources to patients who are most likely to survive to hospital discharge and beyond with treatment.” The protocol also allowed health care providers to give “points” to patients and rank them against one another to see who would get resources.
In allocating those points for determining who would qualify for care, the protocol pointed doctors toward saving people with the most years of future life by disadvantaging people with “major comorbid conditions with substantial impact on long-term survival.”
In other words, someone whose diagnoses might suggest a shorter life span could end up getting passed over for a ventilator or ICU bed in a crowded COVID-19 ward.
Except what’s in a patient’s chart doesn’t always tell the whole story.
Take 55-year-old Julia Adams, who has several significant disabilities, including severe pain and difficulty with movement. Her problems, which can mimic the effects of a stroke, are due to the rare Ehlers-Danlos Syndrome. She uses a crutch and a leg brace and sometimes a spinal brace.
“You might say to yourself, ‘She’s a hot mess and clearly her life expectancy isn’t so great,’” said Adams, a legal scholar who lobbies for people with disabilities at the state legislature. “My [medical diagnosis] codes, when I present in a facility, regardless of why I’m there, give a picture of my life that is not accurate.”
Adams described numerous experiences in which doctors read her chart before meeting her and saw a host of problems. Then they walked into an exam room to actually meet her and did a double take. There she was, dressed to the nines and chatting on her cell phone with a legislator or tapping away on her laptop.
When Adams was diagnosed with Ehlers-Danlos in 1996, she was told she’d be confined to a wheelchair and would be unable to work — both predictions that turned out to be wrong.
“I wish medical science was precise, but it’s not,” said Adams. She said she worries physicians will make assumptions.
Adams said she’s terrified of landing in an emergency room with COVID, short of breath and unable to speak and advocate for herself, with doctors assuming, based on her chart, that she would have poor “long term survivability.”
That was one big problem with the protocol initially agreed upon to be used in North Carolina. It would have, essentially, allowed physicians to make a decision about a patient’s long-term survivability based on their medical history, rather than focusing on whether a person could survive the COVID infection.
And research has consistently shown that doctors, nurses and medical students are notoriously inaccurate when it comes to estimating long-term life expectancy among patients with disabilities.
“If you’re really going to take it to saying, ‘Okay, how long are they going to live?’ Well, then you damn well better be looking at other people that are in pretty good health, but are smokers and have high blood pressure and all that, and do that same calculus,” said Betsy MacMichael, the mom of the daughter with a neurodegenerative condition. “Otherwise that’s not fair.”
Other parts of the protocol that deprioritize people with pre-existing and co-morbid conditions can also end up discriminating against people of color who have had less access to care over their lifetimes, leaving them with more health issues.
For example, Black patients are three times more likely to have kidney failure than whites, more than twice as likely to have congestive heart failure, 40 percent more likely to have high blood pressure and are less likely to have their blood pressure under control. Similarly, Latinos are more likely to have kidney failure than whites, are more likely to have congestive heart failure, and have higher rates of chronic liver disease.
Protocols allocating resources based on a person’s likely life span and COVID-19 survivability means these patients could end up being discriminated to death after a lifetime of poor access to care that left them more vulnerable.
Estimating life years
When hospitals are overwhelmed, maldistribution of resources can become a real concern, said Rebecca Walker, a medical ethicist from the school of medicine at UNC Chapel Hill, who participated in last year’s N.C. Institute of Medicine phone call.
‘You have this sort of tension between how we usually do things in medicine, and how you would have to do things under conditions of really extreme scarcity,” she said. “And so you know, how we usually do things in medicine is you have obligations to the patients that you’re caring for, you do whatever you need to do for their well being.”
The mindset behind making these excruciating decisions comes out of a philosophical framework called utilitarianism, Walker said.
“It’s the greatest welfare for the greatest number in general, and has to do with all different aspects of life, not just with medicine,” Walker said. But she also said it can be difficult to apply in a hospital setting. In a medical context, she said, ethicists think about maximizing the number of life years that are saved.
“That’s the difference between saving a person who, say, has three months left to live because they have a cancer that’s, you know, in its end stages,” she said, “and saving maybe like a 5-year-old child who has no background health conditions. You’re going to save a lot more life years in the second than in the first case.”
This was the logic behind the protocol adopted by the Institute of Medicine. But that logic runs into that cold reality of misunderstanding disability, prejudice and social injustice that so often undergirds who, to begin with, has access to resources in our country’s health care system.
What the federal Department of Health and Human Services argued was that instead of making a judgment about who would survive long term, health care personnel were obligated — by law and by judicial precedent — to only consider who was in front of them and their ability to survive hospitalization and discharge to home.
Walker said that in the context of COVID, the group devising policy at the North Carolina Institute of Medicine didn’t see it that way.
“The problem is that you can’t assess each case individually,” Walker said. “That’s exactly why I think it’s really important to start with that context of you have a limited resource, somebody is going to lose out.
“Because if you assess each case, individually, what will happen instead is that you’ll run out of resources when you get to the next patient who needs it.”
Using long-term survivability as a metric, retorted Disability Rights’ attorney Corye Dunn, relies on statistics, whereas using an individual assessment relies on how the patient in front of a doctor actually is doing. Those survivability statistics, she said, are not meaningful on an individual level.
Walker and Dunn agreed that it was “thorny stuff.”
Finally, movement on the protocol
NC Health News reached out to the federal health and human services Office of Civil Rights, which notified North Carolina on Dec. 16 that the state’s chosen protocol was not adequate and potentially discriminatory. Their press office declined to make anyone available for an interview.
But in January, the head of the Office of Civil Rights, Roger Severino, participated in a webinar about allocation of scarce resources for the National Academy of Sciences, Engineering and Medicine.
Severino acknowledged the gravity of the situation.
“There may not be enough ventilators, there may not be enough beds, there may not be enough trained doctors, and some doctors and providers may be facing some very, very difficult decisions as we try to save as many lives as possible,” he said.
“But there cannot be discrimination on the basis of race, sex, age, religion, or disability. These are the fundamental principles that can’t be cast aside when times get tough.”
Despite the difficulty of basing decisions on individual assessments, Severino punctuated the point that this needed to be the way forward in crisis situations.
“Long term survivability, we believe is not a best practice, as a measurement to take into account, who to choose as to who gets treatment, because it is so closely tied to disability and age,” he said. “We’d recommend when it comes to criteria to use, is doing an individualized assessment of each patient, based on the best objective medical evidence that is available.”
A few days later, with less than a week left in the prior administration, the federal Office of Civil Rights and North Carolina came to an agreement. References to “long term survivability” were expunged from the protocol, along with parts that would have allowed hospitals to effectively penalize people with disabilities in their priority scoring systems.
In the past two months, rates of illness, hospitalization and death have started to plummet. Once again, providers in North Carolina have not had to make these excruciating decisions, but the protocol is now in place in case if, say, COVID variants stoke a resurgence or in the case of another pandemic.
“We’re not out of the woods yet,” said Adams. “We have new variants of COVID-19 that are still being identified. We’re still running tests of our known vaccines against those variants. We’re still not at herd immunity and people with disabilities are still at higher risk because they’ve been placed further down the priority list for vaccines.”
“Just because this particular has moment has passed, doesn’t mean we won’t need protection from discrimination in resource allocation in the future,” Dunn said. “Coming to consensus as a community, that discriminating on the basis of disability is not acceptable in our healthcare system, is a huge step toward disability justice.”
And while Betsy MacMichael is glad for the new protocols, she still worries about how unconscious bias against people like her daughter could play out.
“If I’m rushing my daughter to the hospital in an ambulance, because suddenly she can’t breathe from COVID, they’re gonna whisk her away,” she said. “Am I going to be able to get up in the face of the hospital director and say, ‘Exactly what is your policy about triaging care right now?’ No, I’m not gonna have access to them. It’s not going to be posted anywhere.
“We still feel like we don’t have any power.”
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