Growing fears of a shortage of lifesaving treatment for COVID-19 is prompting concern among activists and organizations who look out for the rights of people with disabilities.
This week, the Survival Coalition, an umbrella group of several Wisconsin disability rights groups, wrote a letter to Gov. Tony Evers stating that their members “share concerns regarding policies other states are implementing that discriminate against people with disabilities and disabling conditions as states seek to ration lifesaving treatment during the COVID-19 health crisis.”
The letter adds: “While we recognize that our own health care system may at some point lack sufficient acute care services and equipment, such as ventilators, to meet the demand of patients with COVID-19 who require intensive treatment, we encourage our state leaders to adopt and promote guidelines and policies that maximize equity and eliminate disability bias.”
After news reports last week that Alabama’s state protocols for ventilator use excluded people with profound brain damage or developmental disabilities sparked a legal challenge, the Office of Civil Rights at the U.S. Department of Health and Human Services said it would investigate complaints of discriminatory protocols.
The agency issued a bulletin that declared: “[P]ersons with disabilities should not be denied medical care on the basis of stereotypes, assessments of quality of life, or judgments about a person’s relative ‘worth’ based on the presence or absence of disabilities. Decisions by covered entities concerning whether an individual is a candidate for treatment should be based on an individualized assessment of the patient based on the best available objective medical evidence.”
Other organizations are also raising the issue. Last week, Disability Rights Wisconsin (DRW) released an open letter warning against COVID-19 rationing plans that would discriminate against the disabled.
“Suffice it to say that the existence of widespread discrimination against people with disabilities by the medical community when making treatment decisions is well established,” the letter states. “In the context of the COVID-19 pandemic we have already heard of some states in which discriminatory rationing policies have been developed. This cannot and must not happen in Wisconsin.”
“We wanted to be proactive to make sure that it’s clear that we’re paying attention to this,” says Lea Kitz, executive director of DRW. “We understand that really difficult decisions need to be made by health-care professionals when and if they are faced with a situation in which they don’t have enough equipment or supplies to treat people.”
At a DHS media briefing on Monday, March 30, Wisconsin Department of Health Services (DHS) Secretary-designee Andrea Palm addressed a question about the issue.
“From a health equity perspective, we obviously want to ensure that those kinds of factors do not disadvantage someone from the care that they need in this response,” said Palm. “It speaks so fundamentally to doing Safer at Home well, so that individual hospitals and individual doctors don’t face those kind of decisions.
“But fundamentally we need to protect folks with disabilities, folks with underlying health conditions, folks with other factors that should not be considered when you’re making those kinds of decisions.”
‘Quality of life’ bias
Discrimination isn’t always conscious or intentional, advocates say. One example: when a judgement about offering or withholding care rests on assumptions about the patient’s ‘quality of life.’
“Prejudice and bias about the ‘quality of life’ that people with disabilities experience has no place in government or medical policy or practice,” says Melissa Mulliken of the Dane County Developmental Disabilities Coalition, a group that includes family members, advocacy groups and providers of residential and vocational supports for people with disabilities.
“People with disabilities and their families should be at the table,” she adds.
Advocates say they readily understand the challenges facing healthcare providers as COVID-19 sweeps the country and the world.
“We’re well aware of the shortage” that hospitals could face with a massive influx of patients, says Marcie Brost, executive director of the Wisconsin Developmental Disabilities Network. Brost, whose adult son is developmentally disabled, wants hospitals and healthcare institutions to disclose how they’re making decisions about giving or withholding care.
“What are the policies they are considering that will dictate how scarce resources will be allocated?” she asks. “Whatever is adopted, whatever policies are put in place, must be consistent with federal civil rights laws, and they cannot discriminate against people with disabilities. They have to be based on objective, medical criteria.”
Still seeking answers
Responding to a Wisconsin Examiner inquiry about ensuring that the rights of people with disabilities are honored and discrimination is avoided if medical providers need to ration lifesaving treatment, Wisconsin Hospital Association spokesman Mark Grapentine stated:
“Hospitals and health systems are guided by multiple federal and state laws and guidance, including applicable ADA laws, whether we are in an emergency situation like the current pandemic or more normal times.”
At UW Health and the UW Hospitals and Clinics, work is under way to draw up policies about allocating scarce medical resources, says Dr. Nasia Safdar, medical director of infection control and prevention.
National guidelines and models from other institutions offer some information, Safdar explains. The criteria are still being discussed, she emphasizes, and if any choice has to be made, it would be as a last resort.
“The things that come into consideration are, what is the expected benefit to one individual versus another — for example, of ventilator support or ICU care?” she continues. “What is the likelihood of one individual being able to recover versus not? And it has to do a lot with how sick one is, whether they have other conditions, how old they may be. These are never things that we would want to do if we could help it, but in a crisis situation like this those are the considerations.”
These are, she acknowledges, very difficult questions.
“I don’t think this would be by any means an easy decision to make,” Safdar says. “Exactly how it plays out I don’t think we know quite at this point. These are all things that have been raised as questions, but we don’t have answers to them, at least in our own health system at this point.”
But however difficult, “it is important to plan for such an eventuality,” Safdar continues. “And if we never have to use it that’s great, but it is important to plan for it, and so we discuss it. There will be questions that people will have about resource allocation with fairness and equity. And also, it’s important to do it using a rigorous process with involvement by all the people that should have a say in this. It’s by no means easy. But it needs to be done.”