Allison Hamblin, MSPH

April 8, 2020

The COVID-19 pandemic has raised a number of ethical dilemmas related to equal access to health care diagnostic and treatment services. In doing so, it is shedding light on many populations that are uniquely impacted and compromised by this public health crisis — including people with disability.

We recently spoke with CHCS Board member Lisa Iezzoni, MD, MSc, professor of medicine at Harvard Medical School and based at the Health Policy Research Center-Mongan Institute, Massachusetts General Hospital, to explore the treatment bias that people with disability may face in the current environment and consider opportunities to reduce potential discrimination. Dr. Iezzoni, who has used a wheelchair for more than 30 years because of multiple sclerosis, brings a unique personal and professional perspective to this issue.

Q: What are unique concerns for people with disability that are top of mind for you during the pandemic?

Our health care system is not very disability competent under normal circumstances, and many people fear that the current situation will leave people with disability more vulnerable than ever.

A: Even in normal circumstances, people living with disability by definition need specific accommodations to be able to lead the lives that other people lead — including accommodations in health care. These needs are only heightened in the current coronavirus situation. For example, say a patient is deaf or hard of hearing, but now every practitioner in the hospital is wearing a mask, making it impossible to lip read. And so, if they relied upon lip reading to assist their communication, from the very beginning, they’re disadvantaged — they’re not going to be able to effectively communicate their concerns or have the conversations they need to understand their treatment options.

There’s also a lot of concern among people with disability who use ventilators, that should they get sick with coronavirus, their ventilatory support might be changed or even taken away. And, people with mobility problems are concerned that should they get hospitalized, the nursing staff will be run too ragged to have time to turn them routinely to avoid pressure injuries, which can have serious complications. Our health care system is not very disability competent under normal circumstances, and many people fear that the current situation will leave people with disability more vulnerable than ever.

Q: In some of the earliest hard-hit regions there are reported shortages of hospital beds and ventilators for COVID-19 patients and increasing concerns and fears about rationing. What are the specific concerns about rationing with regard to people with disability?

A: The concern is that people are going to ration at least partially based on their assumptions about quality of life. We have evidence from all of our prior experiences that the lives of people with disability are often devalued by many others in society. There is pretty good evidence that even doctors believe that quality of life is not high for people with disability. I am part of a research team that just completed the first national survey of physicians and their perceptions of caring for people with disability. Although the specific results are not yet published, we found that the vast majority of doctors view the quality of life of somebody with disability as somewhat or significantly worse than other people. However, there is something called the “disability paradox” – the notion that many people with disability have accommodated to living with disability and view their lives as rich and full. They value their lives.

So, the question is, how does this bias play out in the current environment? Hospitals across the country are seeking to identify objective measures to determine who should receive ventilator support when there are not enough machines for everyone who might benefit. This includes the SOFA Score – the Sequential Organ Failure Assessment Score, which is based on six physiologic measures. But what if you have two patients with identical SOFA scores, one with disability and one without? What other underlying factors will go into decisions about who gets a ventilator and who doesn’t, who’s going to be making these decisions, and how can we ensure any accountability? How will attitudes about disability, about race or ethnicity, or other subjective factors be considered in decision-making? That’s the main fear.

These are horrible decisions for anyone to have to make. To be making these calls in the dark of the night, in chaotic environments, and with no family members or advocates around to help communicate on behalf of patients makes it particularly worrisome. It’s especially a problem for people with intellectual disability, or people who are nonverbal, but who, otherwise are living their lives and doing well – but who can’t advocate for themselves in this situation.

Q: How can state and federal agencies protect the needs and rights of people with disability during this crisis to address the concerns that you raise? Are you seeing examples of any specific actions that are, being advocated for or implemented?

A: In the face of the current pandemic, the Office of Civil Rights at the Department of Health and Human Services just released a bulletin to ensure non-discrimination for medical treatment decisions and compliance with the Americans with Disabilities Act. States, like California, have released guidance for providers around non-discrimination. That’s a start, but this information needs to be communicated far and wide. It’s critical to get out there in a very public way that disability discrimination is real and that it is not legal.

Q: So many people with disability rely on personal care attendants and other home care services to assist with daily activities, what can be done to ensure continued access to these services during the COVID-19 crisis?

How can we ensure that home care workers also have access to the PPE (and associated training on how to use it) that is critical in terms of keeping people with disability in their homes as much as possible?

A: Ideally the very best thing for people with disability is not to have to go to a hospital at all, so we need to ensure that people can get the care and services they need at home, including testing. Many of us can’t go to a drive-through testing center, so we need to make sure there are clinicians who can test people in their homes. Both in-home testing and provision of in-home services to those who test positive require personal protective equipment (PPE) for home care workers, including home aides, home care nurses, personal care assistants. We know about the PPE shortages even in hospitals, but how can we ensure that home care workers also have access to the PPE (and associated training on how to use it) that is critical in terms of keeping people with disability in their homes as much as possible?

Even before this pandemic, we know that we simply do not have enough personal care assistants and people who can provide activities of daily living (ADL) support. So in the midst of a pandemic, it just exacerbates the problem and highlights a call to action for strengthening our home care workforce, for example by paying them a living wage and other labor protections, like paid sick time.

Q: If you think about what keeps you up at night, as you think about these issues, what’s the one message that you would want to make sure people take with them from this conversation?

It is good to see some states realizing the need to bring together their bioethicists, their physician communities, and their communities of people with disability and those who are racial and ethnic minorities and other populations that experience discrimination to talk about how to ensure equitable allocation of resources.

A: It is clear that we were woefully unprepared for this pandemic on many dimensions. However, there is still time to make sure that important protections are put in place for people with disability. Organizations like the Hastings Center are outlining concrete strategies for minimizing “ableism” in crisis planning and making ethical decisions in the current environment. We can learn from peers in Massachusetts and Illinois, who are reaching out to state officials and hospital associations with suggestions for protecting the rights of people with disability amid the pandemic. And it is good to see some states realizing the need to bring together their bioethicists, their physician communities, and their communities of people with disability and those who are racial and ethnic minorities and other populations that experience discrimination to talk about how to ensure equitable allocation of resources.

I hope that that the one thing that comes out of this challenging time is a universal lesson on the importance of social solidarity and what it truly means for us to live and support each other across the country.

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Michael Ogg

Thanks for this thoughtful discussion. I am quadriplegic and have been mostly bedbound for sometime because of pressure sores. I am the “disability paradox.“ Of course I value my life and my quality of life is good. With this coronavirus crisis, I am so glad that I fought to live at home. My biggest risks are: a COVID-19 infection brought into the house by my homecare aides or nurses; requiring hospitalization for any non-coronavirus related problem; and my especially high-risk of hospitalization for any grade of coronavirus infection. The first one I mitigate as much as possible. The second, I… Read more »