Who lives, and who dies, if coronavirus patients overwhelm hospitals and force doctors to ration beds, ventilators and care?
It’s a distressing but vital question to ask during a pandemic. In Florida, however, it’s one health officials wouldn’t answer.
State officials have punted this ethical dilemma to health care providers, who in response have filled the void with a patchwork of protocols as Florida nears its peak period of hospitalizations for COVID-19, the disease caused by the novel coronavirus.
Experts say standardized, ethical guidelines for rationing care is crucial in a crisis when there is a scarcity of medical supplies. Without them, patients could be discriminated against or receive unequal care, and it opens the door to legal liability for health care providers. At the same time, not having such protocols could put extra pressure on doctors, nurses and emergency responders, many of whom are already at their breaking points.
"No one wants to make that call. It’s heart-wrenching,” said Sara Singer, a Stanford University professor who studies hospital safety and health care policy. “So you need to have their backs.”
Florida once prepared guidelines for a crisis remarkably similar to the one it faces today, but they were abandoned. Some states are readying policies that prioritize resources for patients based on their likelihood to survive. Not Florida.
For weeks, the Tampa Bay Times repeatedly asked the Department of Health about its policy for triage — a medical term for the order in which patients are treated during an emergency. The department declined to make someone available to interview.
Instead, the state replied with written responses that focused on volume of resources the state has provided, but it omitted the word “triage.” It included a link to information for health care providers that didn’t address how doctors or nurses should be expected to ration care in a crisis. The department did not respond to follow-up questions.
“The Department of Health is following the latest (Centers for Disease Control and Prevention) guidance, which focuses on Personal Protective Equipment alternative strategies, resource allocation and conservation,” health department spokesman Alberto Moscoso said in the statement. “The Department maintains regular contact with health care providers across the state to ensure they are receiving the medical equipment and resources needed to continue testing and treating patients for COVID-19.”
The state’s lack of guidance concerns Tony DePalma, director of public policy with Disability Rights Florida. His organization wrote a letter to Gov. Ron DeSantis last month, asking that his administration ensure “non-discriminatory access" to medical care for people with disabilities during the COVID-19 emergency. The administration has not responded.
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“It’s dangerous that the state is trotting up to this moment without clearly indicating that federal anti-discrimination laws are in place and that care will be coordinated as such,” DePalma said.
The retirement-age advocacy group AARP Florida similarly called for more transparency from state officials and hospitals in drafting these protocols.
To fill the vacuum, the Florida Bioethics Network has produced its own suggested standards for crisis care.
Made up of large institutional members such as Baptist Health South Florida, Cleveland Clinic, UM Health and Jackson Health, as well as a few hundred individual members, the network aims to resolve ethical and legal problems involving health care and research. It pointed to the possibility that there will be a shortage of ventilators during the coronavirus pandemic. Failure by the government and institutions to prepare, it warned, “invites disorder, permits arbitrariness, risks bias and increases the likelihood that patients who would have survived with ventilator support will die because patients likely to die were using the machines.”
“The failure to adopt some sort of guidelines like this will lead to more people dying,” said Dr. Kenneth Goodman, director of the Florida Bioethics Network. “Why would anyone want that?”
The group’s guidelines say decisions should be made regardless of a patient’s social status or demographics. It proposes to score patients based on levels of organ failure and other underlying health issues, including dementia, metastatic cancer or end-stage renal disease.
The guidelines suggest using age only as a tiebreaker, giving younger patients priority. It also suggests that those who provide a crucial public health role in responding to the crisis should be scored higher.
The document even lays out ways to regularly evaluate a patient already on a ventilator to determine if they should be removed from it.
The Florida Hospital Association, which includes more than 200 hospitals and health systems members, endorsed the guidance Tuesday.
Crystal Stickle, interim president and CEO for the association, called the guidelines “measures of last resort that every hospital in the state has been working around the clock to avoid by procuring all available supplies, equipment and resources."
BayCare spokeswoman Joni James said last week that her organization was reviewing the Florida Bioethics Network’s guidelines and was “joining with fellow members of the Florida Hospital Association” to consider crisis standards of care.
“We hope, of course, this work will prove unnecessary,” James said.
A spokesperson for Jackson Health system in Miami, the epicenter of Florida’s coronavirus outbreak, recently told the Times it was completing a plan, but wasn’t ready to discuss it publicly.
UF Health spokesman Ken Garcia said his organization has clinical ethics teams and critical care providers work together to figure out how to “maximize resources" for as many people as possible.
Tampa General Hospital plans to use its ethics committee to make case-by-case decisions if necessary, said chief executive John Couris. Those discussions are ongoing.
As doctors learn more about this new disease, some hospitals are also rethinking when a ventilator is necessary.
Without uniform guidelines across the state, someone at one hospital might be denied a ventilator that would have been given to them at another hospital. That could lead to “lawsuits and a setting for recrimination and criticism,” said Richard Hopkins, Florida’s acting state epidemiologist until he left in 2012.
Many states realized the need for preparedness plans and crisis standards of care after the 2009 H1N1 pandemic, said Nancy Berlinger, researcher at the Hastings Center, a leader in the field of bioethics.
Now, some states are rapidly updating that work to fit with the unique challenges related to COVID-19.
The general principles of crisis standards of care are fairly straightforward: prioritize to save as many lives as possible. But how exactly that’s determined differs, and is fraught with ethical questions.
Earlier this year, Alabama made headlines for a crisis policy that said in part people with “severe mental retardation ... may be poor candidates for ventilator support.” (Alabama later withdrew those guidelines.)
On March 28, the U.S. Department of Health and Human Services’ Office of Civil Rights issued a bulletin reminding states that civil rights protections are not waived in an emergency.
Florida is not the only state that hasn’t addressed this issue. A recent report by the Center for Public Integrity, a nonprofit newsroom, found 20 other states do not have (or would not provide) emergency triage guidelines. Some states, including Arkansas, Delaware, Idaho, New Jersey, Virginia and Massachusetts, are scrambling to put together policies now. And others, like California, have vague protocols of little help to front-line workers, or include policies that advocates say discriminate against people with disabilities, the report said.
In Florida, Hopkins said he once urged officials to hold workshops across the state. He wanted to bring together residents, faith leaders and medical experts to build public support for this sensitive issue. The idea went nowhere.
As Hopkins put it: "I was a voice in the wilderness.”
The Department of Health has taken up this ethical dilemma in the past, only to shelve the final outcome without adopting it.
In 2011, the Department of Health drafted procedures that sounded especially helpful for the current crisis: “Pandemic Influenza Triage and Scarce Resource Allocation Guidelines.” It was a 41-page map that could navigate doctors through the most difficult life or death decisions.
The goal of the guidelines, the document said, was to “provide the greatest good for the greatest number,” and “reduce or eliminate healthcare worker liability.”
The guidelines were never adopted. While it’s unclear why, the issue did come up soon after “death panels” emerged as an unfounded boogeyman that haunted the 2010 passage of the Affordable Care Act. A Department of Health spokesman refused to comment.
Asked about the state’s triage guidelines, Mary Mayhew, the secretary for the Agency for Health Care Administration overseeing hospitals, said: “I’m not sure what you mean in terms of triage.” Pressed further, she added: “I can’t speak to that from my agency’s perspective,” and directed questions to the Department of Health.
Goodman, who worked on the 2011 guidelines, said he didn’t know why the effort was abandoned. He said the Florida Bioethics Network’s guidelines were partly derived from it.
As the Times reported this story, the Department of Health removed the 9-year-old draft document from its website.
A spokesman wouldn’t say why.
Times staff writers Neil Bedi and Justine Griffin contributed to this report.
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