As the COVID-19 crisis rolls across the nation, neurologists and their health care colleagues are dealing with resource shortages that may have life-limiting consequences for their patients.
Bioethicists say physicians should prepare themselves for rationing of medical equipment, bed capacity, and services at an unprecedented scale.
The AAN Ethics, Law & Humanities Committee, in conjunction with the Neurocritical Care Society, is developing a guidance statement. In the meantime, public health leaders say clinicians and the general public must accept that a shortage of ventilators, intensive care beds, hospital beds and health care staff require explicit rationing.
Hospitals are scrambling to create or update policies about how scarce health care resources will be allocated. Health care professionals and members of the public will suffer moral distress to see the policies implemented, Jason T. Eberl, PhD, director of the Albert Gnaegi Center for Health Care Ethics at St. Louis University, told Neurology Today.
"No physician is going to want to accept that their patient isn't going to get the best care that they know their patient needs and families don't want to accept that a loved one is potentially not going to get ventilated if they need a ventilator," Dr. Eberl said. "It may seem like a lose-lose situation but I call it 'lose-least.' We're trying to lose the least number of lives with these policies."
He hopes that, as resource-allocation policies become publicized, they will galvanize individuals to do what they can to reduce the spread of the disease.
"Our best response, instead of simply expressing moral outrage about the need for this rationing, is to take whatever steps we can to lessen the need for it," he said. "The more we flatten the curve, the more we're able to reduce (the pandemic) and maybe we won't have to implement these policies. That's the idea."
Paul Root Wolpe, PhD, director of the Center for Ethics at Emory University, encouraged neurologists to educate themselves about their own institution's policy before demand for ventilators and ICU beds forces allocation decisions.
"Know what it says and how it gets invoked," said Dr. Wolpe, editor-in-chief of the American Journal of Bioethics Neuroscience. "Make sure it's been updated because some of these policies were written 30 years ago for a possible flu epidemic that has never occurred."
In most cases, neurologists will not actually make decisions about who gets scarce resources but knowing how the decisions are made is important. "The critical care and emergency care physicians will need support," Dr. Wolpe said. "Neurologists should do everything in their power to support their colleagues through this because these decisions aren't easy for anybody."
Dr. Wolpe noted that recommendations for resource-allocation decisions by bioethicist and oncologist Ezekiel J. Emanuel, MD, vice provost for Global Initiatives at the University of Pennsylvania, and nine other bioethicists from around the world, have received a lot of attention. But he said there is no consensus that the guidelines, published in the March 23 online edition of the New England Journal of Medicine, are the right ones.
Dr. Wolpe, president of the Association of Bioethics Program Directors, said he has found a wide range of approaches to policies he has reviewed in the past month regarding allocation of scarce resources during the COVID-19 outbreak.
"There are some real disagreements," he said. "For example, some policies use age as a criterion and some of them explicitly say age may not be used as a criterion."
Those that do give preference to younger patients over older individuals are controversial when it comes to specifying a cut point. "If I'm 64 and you're 63, that means you get the resources and I don't—is that a reasonable difference?" Dr. Wolpe asked.
Some policies have exclusion criteria, meaning that patients with certain conditions, such as terminal cancer, do not get considered for a ventilator or ICU bed if resources are scarce. Dr. Wolpe pointed out that some patients with a terminal cancer diagnosis can live years or even decades after diagnosis, managing the disease with medication.
Some argue that it is discriminatory to exclude them just because they have this diagnosis," he said.
From the Frontlines
Internist Lydia Dugdale, MD, associate director of clinical ethics for NewYork-Presbyterian Hospital, is testing and treating COVID-19 patients who have been diverted from the hospital's overrun emergency department.
In an interview with Neurology Today, she offered two pieces of advice for neurologists. First, she said, they should do their best to keep patients out of the hospital if at all possible.
"If they have patients who are sort of 'soft admissions'—'she's 85 and I'm a little worried about her; let's just admit her because it's safer'—they need to get them out of the hospital," said Dr. Dugdale, director of the Columbia Center for Clinical Ethics. "It's not just to free up beds for pandemic patients. It's also to keep them from getting sick because there is so much virus now in the hospitals."
Beyond that, physicians need to recalibrate their professional ethics to reflect the toll of the pandemic, she said.
Physicians trained in the past four decades are steeped in the "four principles" as asserted by Tom Beauchamp and James Childress in their 1979 textbook, Principles of Biomedical Ethics: (1) autonomy—an individual's right to make his or her own choices; (2) beneficence—a physician's responsibility to act in the best interest of his or her patient; (3) non-maleficence—to cause no harm; and (4) justice—the importance of fairness and equality among individuals.
"In times of public health crisis, the four ethical principles that characterize the doctor-patient relationship are actually supplanted by more of a public health model of ethics," which may be articulated differently by different groups, Dr. Dugdale said
In New York, for example, the state health department in 2015 developed guidance for allocating ventilators in a public health disaster that reflected five ethical tenets: duty to care, duty to steward resources, duty to plan, distributive justice, and transparency. Distributive justice is defined as an allocation protocol that is consistently fair, Dr. Dugdale said, and transparency promotes public trust by making the protocol clear to everyone.
The patient's autonomy—does he or she wish to have ventilation removed?—does not appear in the ethical framework. "Clearly we still want to respect the wishes of our patients but public-health ethics balances respect for patient autonomy with more of a collective view of health," she said.
Hospital Policies Coming
Some physicians will be unwilling or unable to prioritize the "collective good" over the individual patient who needs their care, which is why hospitals need written policies that guide decision-making about allocating scarce resources, bioethicists said.
Many academic medical centers have policies that have never needed to be implemented; others have never developed a resource-allocation policy. In either case, organizations are working quickly to prepare policies to address the issues presented by COVID-19 and reveal them to the public.
The Association of Bioethics Program Directors—representing 83 institutions in the US and Canada—has collected and analyzed more than 50 such policies in the past few weeks, said Judy Illes, CM, PhD, director of Neuroethics Canada. Summary findings from the review of the policies will be published this spring.
"It's been an extraordinary effort to produce a paper that offers really practical guidance and shows the collective thinking around these great challenging issues," said Dr. Illes, director of Neuroethics Canada at the University of British Columbia.
Dr. Eberl, who is managing the project, expects most hospital policies to include two features that will be new for most physicians: a written framework for deciding which patients get ventilators, ICU beds, and other resources if a shortage exists, and a triage team that uses the framework to make individual decisions. Although there are no national triage-team standards yet, several policies Dr. Eberl has reviewed so far call for the team to make their decisions based on data available in medical charts.
"That makes it a blind process—you don't know if it's Jane Doe off the street or Brad Pitt showing up in your ED," he said.
That approach increases the likelihood that scarce resources will be allocated fairly, rather than to the patients whose physicians are most persuasive and it removes the burden of decision-making from physicians.
"Treating physicians at the bedside should always have the best interest of the patient in front of them in mind and be an advocate for their patient but, at the same time, physicians have to be at the service of the common good," Dr. Eberl said. "These triage policies kind of lessen the moral burden of the individual physician at the bedside."
James Giordano, PhD, professor of neurology and bioethicist at Georgetown University Medical Center, said physicians' ethical responsibility to advocate for their patients broadens when a health system moves from "normal mode" to "crisis mode," which is determined by health system leadership.
"In crisis mode, the physicians' priority can be extended beyond their proximate patients to those who may be in need of resources, goods and services," said Dr. Giordano, chief of Georgetown's Neuroethics Studies Program.
Link Up for More Information:
White DB, Lo B. Viewpoint: A framework for rationing ventilators and critical care best during the COVID-19 pandemic. JAMA 2020; Epub 2020 Mar 27.
Emanuel EJ, Persad G, Upshur R, et al. Fair allocation of scarce medical resources in the time of Covid-19. N Engl J Med 2020; Epub 2020 Mar 23.
Truog RD, Mitchell C, Daley GQ. The toughest triage—Allocating ventilators in a pandemic. N Engl Med 2020; Epub 2020 Mar 23.