Your Chance to Weigh In on Ventilator Rationing for a Severe Flu Pandemic

by Sheri Fink, ProPublica

On Monday, ordinary Americans get a rare opportunity to weigh in on a life-and-death issue: Who gets access to scarce, life-saving treatments during a disaster?

The public has been invited to participate in a teleconference (PDF) in which advisers to the Centers for Disease Control and Prevention will discuss ethical guidance they have drawn up for rationing mechanical ventilators in a severe influenza pandemic.

The hourlong conference takes place at 3 p.m. EST and anyone can listen to the proceedings by calling (866) 919-3560 and entering passcode 4168828. According to the agenda, the committee is scheduled to vote on the guidance before it opens the meeting to public comments. The document will then go to the full advisory committee to the director of the CDC for approval.

The views of the advisory committee to the CDC director are not binding on states, which have ultimate authority over how to handle health emergencies. But the guidance is intended to serve as a "foundation for decision making" for health policymakers "at all levels -- federal, tribal, territorial, state, and local," according to the document.

Chances are, few people will phone in to join Monday's meeting. CDC officials have not advertised the session outside of a notice published late in the Federal Register. The draft guidance document (PDF) has not been widely released and was provided to ProPublica only after requests to several members of panel.

The document, dated Oct. 30, 2009, has some intriguing features. It parts company with several aspects of the guidelines drafted by states like New York and Florida, but it still envisions, at a time of extreme emergency, taking off of ventilators those patients who are not improving, to make way for others who may have better chances of surviving, even if family members do not agree. It says ethical guidance is particularly timely because shortages of mechanical ventilators could arise in the coming months if the H1N1 or "swine flu" virus becomes more widespread or severe.

According to a CDC spokesman, the guidelines were "developed independently" by an "independent group of experts on ethical principles" and are not CDC recommendations -- even though CDC employees made up two-thirds of the 18-member group that drafted the document.

Fewer than half of the group's members had substantial backgrounds in bioethics. Some helped write the allocation schemes analyzed in the document, putting them in the potentially uncomfortable position of assessing their own work.

The document, which makes few specific recommendations, offers what it terms an "ethical framework" for policymakers who are deciding who should receive ventilators:

New York, Utah, Florida and other states and groups of medical professionals have drafted pandemic triage guidelines that call for patients with certain pre-existing conditions (such as the elderly or those with advanced cancer, severe heart disease or severe neurological deficits) to be categorically excluded from access to ventilators or hospital admission in a severe pandemic. The panel suggested a different approach: All patients should be given a priority score calculated to reflect a variety of factors, such as the likelihood they would survive if given a ventilator, the number of years they are expected to live, or age. Guidelines should be based on evidence and revised on the basis of research, and no one should be summarily excluded.

The panel questioned whether it would be fair for policymakers to require certain people who have a comparatively lower but still reasonable chance of survival to give up ventilators to others with a better chance at survival, in an effort to increase the number of lives saved across a population. The document suggests that the goal of maximizing the "health of the public" in a disaster be weighed against giving all patients "a fair chance at survival."

The group advised against factoring an individual's perceived contributions to society into allocation decisions, writing: "In our morally pluralistic society, there has been widespread rejection of the idea that one individual is intrinsically more worthy of saving than another."

However, the committee accepted another controversial idea -- that mechanical ventilators could be disconnected from patients "whose prognosis has significantly worsened," regardless of their wishes, and provide those ventilators to "patients with a better prognosis." Patients, it said, "should be notified this will occur, given a chance to say good-byes and complete religious rituals, and provided compassionate palliative care."

Some doctors have questioned that last concept. The U.S. Supreme Court's acceptance of withdrawing life support hinges on the 14th Amendment's guarantees of a right to liberty. A patient or the patient's legal surrogate has a right to refuse treatment (or in rare cases a doctor can deem a treatment "futile" or not beneficial to the patient). Many of the states' triage plans for pandemics do not envision seeking consent before ventilators are withdrawn. Decisions would be made by clinicians using a clinical scoring system or exclusion criteria.

The draft document advises policymakers to include the public in "frank dialogue and genuine deliberation" about the various tradeoffs among the principles. "Most importantly," the report said, "the values and priorities of community members who will be impacted by decisions about allocation of scarce life-saving resources must be considered in the development of triage plans."

Thus far, the public has been little engaged. The ethics group spent two years drafting the document, and did not, as part of its deliberations, specifically reach out to the broader community.

Write to Sheri Fink at sheri.fink@propublica.org.

ProPublica is an independent, non-profit newsroom that produces investigative journalism in the public interest.

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