Have that talk about rationing health care
By LEE DAUGHERTY BIDDISON, RUTH FADEN, ALAN REGENBERG AND ERIC TONER | Special to The Washington Post | Published: March 13, 2020
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As the coronavirus spread in Wuhan, China, health care providers did not have enough beds for all the people who needed them. In the worst-hit regions of Italy, hospitals are being pushed to the limits of their capacity — having to make decisions about who will receive lifesaving care and who won’t.
The United States is nowhere near this situation, yet, but academic modeling has long shown that even a moderate viral pandemic can quickly lead to a need for resources — including intensive-care beds and mechanical ventilators — that surpasses our health system’s capacity. If that happens, hospitals will be forced to make harrowing decisions about how to allocate scarce lifesaving care.
Although some states — including New York and Minnesota — have plans for how to decide which patients will get scarce ICU beds and other resources if rationing becomes a grim necessity, many do not. And there is no national plan that serves this purpose. Many health care institutions are working ardently to develop response plans for COVID-19, the disease caused by the new coronavirus. But it’s not enough for doctors and other officials to be planning for this terrible contingency: The best plans will fail if the public has not been involved and is unprepared. No system will work if patients and their families reject as unjust life-or-death decisions that seem arbitrary, imposed on them by experts without justification.
For this reason, after the 2009 H1N1 pandemic, in a calm between emergencies, we and other collaborators engaged the Maryland public in a discussion of ventilator rationing during a pandemic. Over the course of 18 months, we hosted 15 daylong forums across the state with over 300 participants (both laypeople and health care professionals) to encourage in-depth conversations about the brutal challenges that rationing presents — and about the community values that should guide allocation.
In the end, participants embraced a system that took two chief factors into consideration. First, they wanted to make sure that people who were most likely to survive if they got a ventilator got one. Second, they wanted to consider, in some way, the prospect of longer-term survival. On this latter point, people were wary of the concept of long-term survival rates, arguing that prioritizing it could lead to discrimination against people with chronic conditions such as diabetes or high blood pressure (who may have had limited access to care); it might therefore exacerbate existing social inequality. They agreed, however, that it would make sense to consider the likelihood of survival for one year after the medical intervention.
If it turned out that doctors’ ability to predict differences in survivability among ICU candidates were proving insufficient, people said that a shift to a more “blind” system such as a lottery would be appropriate.
As a follow-up to these discussions, a group of experts in health care, ethics and disaster planning formalized these principles into a triage scoring system so that it could be adopted by Maryland or other states, and implemented by hospitals. First, a trained triage team made up of doctors and nurses would assign critically ill patients a score of 1 to 4, based on how likely they would be to survive if given a ventilator (using well-established algorithms for rating respiratory problems). Second, you’d have three points added to your score if you had an underlying illness grave enough that you’d be unlikely to live more than a year after the assessment. After the ratings, patients with lower scores would be prioritized over those with higher scores. The expert panel also recommended that the state set up an official committee that would review and monitor triaging decisions.
In general, study participants were wary of considering people’s ages when allocating care, but in the event of a tie on this seven-point scale, they were willing to grant the advantage to people in younger cohorts, who potentially have more life ahead of them.
Just as important as understanding people’s thoughts about rationing was the process through which we did so. We presented them with extensive factual information as well as access to a range of experts, and they were able to debate these extraordinarily difficult issues among themselves in small groups.
In each session, participants were presented with a set of four ethical principles that could be used for allocating mechanical ventilators (or, in theory, any necessary lifesaving equipment). These included: 1) saving as many lives as possible, 2) saving as many years of life as possible; 3) giving priority to people who have lived through fewer “stages of life,” and 4) prioritizing people whose expertise could provide a service to the community in a crisis. The group also discussed using two simple rules, instead — “first come, first served” or a lottery.
We encouraged community members to consider the pros and cons of each approach, how they might combine them and what other considerations they deemed relevant.
People recognized good moral reasons for prioritizing people with valuable skills for pandemic response — emergency-medical technicians, say — but quickly found that it would be difficult to apply this approach fairly. For one thing, those who are sick enough to need a ventilator during a pandemic would face a long recovery and likely be unable to reenter the workforce during that crisis. And defining who might be considered important to the pandemic response could engender unresolvable debate. (Politicians? Police? Anyone who keeps a hospital running?)
Participants worried whether officials would maintain objectivity and fairness in applying any decision-making framework; stating the policy in advance, and sticking firmly to it in an emergency, would help, they thought. They also recommended time-limited mechanisms for appealing decisions.
They rejected “first come, first served” on fairness grounds; people who have inadequate or no health insurance may delay going to a hospital, or their trip there might be slowed if they relied on mass transit instead of their own cars.
Lotteries in general struck people as too arbitrary. But again, in cases where two patients had an identical score, and an identical “life stage,” a lottery might be appropriate, they thought.
Not surprisingly, everyone who participated in the forums proposed fixes that would let them bypass tough calls: Why not build more hospital rooms for instance, or stock up in advance on ventilators? But participants came to agree that, depending on the severity of the pandemic, shortages can be inevitable. If rationing of ventilators becomes a reality, the best we can hope for is, perhaps, the least bad outcome. Rationing will be traumatic for all involved — but it will be even more traumatic if the public is utterly unprepared for this contingency.
To be sure, health officials and politicians need to walk a communications tightrope: Our best chance at a successful public health response to this crisis requires public order, not panic. It is appropriate and accurate to reassure the public that most people who contract COVID-19 will recover fully on their own. At the same time, the public needs to be prepared for the possibility of more dire scenarios. Our participants were adamant that politicians, and health officials, be transparent and honest about the prospect of and plans for the rationing of ventilators and other equipment. In health emergencies, experts often ask the public to heed the advice of public health professionals; in the case of planning for situations involving scarcity, it is equally important that the experts heed the advice of the public.
All states should have policies in place already to deal with the awful prospect of rationing, but it’s not too late to start this crucial conversation.
Lee Daugherty Biddison is an associate professor of medicine, and contributing scholar at the Center for Health Security, at Johns Hopkins University. Ruth Faden is the Philip Franklin Wagley professor of biomedical ethics at Johns Hopkins University. Allan Regenberg is an associate faculty member at the Johns Hopkins Berman Institute of Bioethics. Eric Toner is a senior scholar at the Center for Health Security at the Johns Hopkins Bloomberg School of Public Health.