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“The COVID-19 pandemic is highlighting that most crisis standards of care fail to account for health and societal inequities.”
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Community Engagement Is Essential for Developing COVID-19 Crisis Standards of Care

By IHI Multimedia Team | Wednesday, April 29, 2020

Crisis Standards of Care VLH

Photo by IA SB | Unsplash

COVID-19 has pulled back the curtain on health care issues many of us never thought we would have to worry about. This includes crisis standards of care (CSC), which are enacted when patient needs, caused by a major catastrophe or a pandemic, outstrip the resources available to adequately provide care to everyone who needs it. Though worst-case scenarios now planned for may never happen, policy makers and health care systems are issuing and discussing crisis policies in case they are needed in the future. The COVID-19 pandemic is highlighting that most CSC fail to account for health and societal inequities.

How might CSC in the US evolve to promote equity and gain greater trust and acceptance during dire times? The IHI Virtual Learning Hour on April 17 (COVID-19 and Crisis Standards of Care) focused on exploring this question and other considerations. Special guests included Christine Cassel, MD, Professor of Medicine at the University of California San Francisco School of Medicine, and Dan Hanfling, a Vice President at In-Q-Tel and co-convener of the National Academies of Sciences, Engineering, and Medicine Standing Committee on Emerging Infectious Diseases and 21st Century Health Threats.

While some people could never have imagined a situation as cataclysmic as the current COVID-19 pandemic, Dan Hanfling and others have been thinking about scenarios like this for many years. Under the auspices of the National Academies (originally the Institute of Medicine), he participated in a committee that developed a Framework for Catastrophic Disaster Response specifically for large-scale public health emergencies between the first and second wave of the H1N1 pandemic a decade ago.

According to Hanfling, this multidisciplinary panel of clinicians, ethicists, public health lawyers, and others addressed three questions:

  • Who should receive care when not all patients can receive care in a catastrophic event?
  • How should decisions be made about who gets access to care?
  • Should the standard of care change to reflect that care will change under such circumstances?

The committee defined crisis standards of care as a substantial change in customary health care operations made necessary by a pervasive emergency. They anticipated, among other things, the importance of conservation, substitution, and adaptation that has become central to the COVID-19 response, particularly regarding personal protective equipment.

Disaster Response Framework

Using an image inspired by the Lincoln Memorial that appears in a 2012 IOM report on crisis standards of care, Hanfling noted that the foundations of the framework are ethical considerations and the rule of law. He described the purposeful placement of each step. “You cannot talk about implementation of scarce resource allocation decision-making without [engaging] doctors and nurses and others who are in the trenches, at the bedside, making and helping to make those decisions,” said Hanfling.

He also emphasized the importance of community engagement. “The community has values that it wants to transmit to health care providers,” he noted. “It's really important to hear what those values are.”

Hanfling described “road testing” a crisis standards community engagement toolkit in Massachusetts in 2012, in both Boston and Lawrence, an economically disadvantaged, mostly Latino community. This testing helped his team recognize the public’s ability to engage in complicated issues when given the opportunity and the necessity of allowing many voices to be heard.

Commenting on the CSC planning process, Hanfling noted, “It’s the conversations and engagement that are the most important. [The process] must focus on transparency and proportionality, consistency, and accountability. We are accountable to the patients who we serve, and we need to be fair in the allocation of resources as we deliver them, even under crisis conditions.”

Regarding fair allocation of resources and recent debates about crisis standards of care, Christine Cassel noted that the health care workforce needs to be trained to understand the basic language of values in health care. Otherwise, she cautioned, “we’re going to inevitably see conflicts” as health care professionals feel unprepared to make difficult choices and, consequently, experience moral distress.

One way to avoid this is to make ethics discussions open and visible. If there is conflict, Cassel asserted, we should “allow and celebrate those disagreements, give people the space and the language to talk with each other about it,” and provide opportunities for discourse and mutual understanding.

Cassel also emphasized the need to allow people space and time to process difficult situations. “It doesn't have to be an hour sit-down meeting because nobody has time for that [right now],” she acknowledged. Taking time to recognize tough circumstances and encourage open discussion is crucial. How did that feel to you? How are you doing? Do you understand why they made that decision? “Don’t make it taboo to talk about these things,” Cassel advised, “because that’s where you end up with distress and misunderstandings about why things are done and how things turn out.”

Controversy Over Crisis Standards of Care

Cassel addressed aspects of the national controversy over CSC in the US. Advocates are expressing concern about how some crisis guidelines regarding the use of ventilators, for example, may do a disservice to already disadvantaged populations, including those with disabilities, older adults, and people of color.

While many states and organizations report that their CSC focus on prognosis rather than categories of people as part of the criteria, Cassel asserted that the implications of any criteria need to be fully understood. “Justice is not always the same thing as fairness,” she noted. For example, Cassel suggested — for the sake of argument — that perhaps the fairest way to allocate ventilators might be to use a lottery system because then “it doesn’t matter who you are, what your condition is — [you may be likely] to die tomorrow, [but] you have an equal chance of getting that ventilator.”

Cassel noted, however, that “justice is more nuanced.” A justice-based framework attempts to address historic inequities, but Cassel remarked that it is unrealistic to “ask people on the spot in a single microsystem — like an ICU or an emergency department — to make restorative or redistributive decisions by themselves.” For this reason, Cassel urged more health care systems to follow the examples set by many safety net hospitals and community health centers that build social justice into their systemic approaches to health and health care before the next disaster hits.

As Hanfling noted, “Those of us who have been engaged in crisis standards of care planning and implementation recognize that we should try never to get into crisis care in the first place. Our goal should be to avoid it at all costs.”

For more of the discussion, watch and listen to the full Virtual Learning Hour on Crisis Standards of Care. Learn more about future episodes in IHI’s special series of weekly COVID-19 Virtual Learning Hours.

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