Article In Brief
Neuroethicists, discuss the distribution of the COVID-19 vaccine as it relates to the practical challenges concerning supply and demand and prioritization.
As the rollout of the COVID-19 vaccine continues around the country (and the world), in addition to the practical challenges of supply and distribution, ethical questions about prioritization mandated participation, and public messaging are coming to light. Neurology Today reached out to neurologists who specialize in ethics to hear about some of the dilemmas they are grappling with during this time.
“First, it has been very important for us to take that step back from our usual fiduciary relationship where we are advocating solely for the best interest of the patient before us and to also think about the implications of the decisions we make for other patients and for other people who are not directly in our care,” said Benjamin Tolchin, MD, MS, FAAN, co-chair of the Yale New Haven Hospital Adult Ethics Committee and assistant professor of neurology at the Yale School of Medicine.
In the US, where many neurologists do not face issues of resource scarcity in their medical offices on a regular basis, they are used to putting the needs of their individual patient above all else. But throughout this pandemic and now with vaccines, they have had to pivot that focus to consider the public's health as well.
“If you think about it from the four principles of medical ethics, we generally focus a lot on autonomy, beneficence, and nonmaleficence—the choices of our patient, the welfare of our patient, not doing harm to our patient, but there is a fourth equally important medical ethical principle of justice, which requires us to think about the impact of our medical decisions on others,” Dr. Tolchin, who serves on the AAN's Guidelines Subcommittee and the Ethics, Law, and Humanities Committee, added. “In the case of a public health emergency, that fourth principle of justice takes on a much higher priority.”
So when patients have come to Dr. Tolchin asking for a neurologist's note to qualify them for a vaccine ahead of their prioritization level, he has had to decline. “At least for now, every time we give the vaccine to somebody, somebody else is not getting it. I find it's helpful not to be judgmental about these requests but to be sympathetic to their interest in getting vaccinated and to validate that, and also to promise that you're in this together and that you're going to help them as much as you can to get vaccinated within the legal requirements.”
Who Should Be Prioritized?
The overall focus of the Centers for Disease Control and Prevention and state prioritization guidelines has been (1) saving the most lives and (2) reducing transmission, experts said, noting that these priorities can sometimes be at odds when viewed in the short- versus long-term.
“One interesting ethical question regarding vaccine distribution to patients with neurologic disorders is whether patients with progressive neurodegenerative or neuromuscular disorders like amyotrophic lateral sclerosis should be prioritized to get the vaccine,” Ariane Lewis, MD, associate professor in the departments of neurology and neurosurgery and director of the neurocritical care division at NYU Grossman School of Medicine and a member of the AAN's Ethics, Law, and Humanities Committee, said.
“On the one hand, these patients have limited life expectancy in comparison to healthy individuals, so the duration of benefit from the vaccine would be shorter, but on the other hand, perhaps these are the patients who need the vaccine the most because it could have the most profound impact on their quality of life relative to the length of survival after the vaccine,” she added, noting that this is “a macrocosmic version of the goals-of-care question commonly posed on an individual basis regarding whether length or quality of life should be prioritized.”
These are important considerations that have been wrestled with extensively over the course of this pandemic, Dr. Tolchin agreed, but ethicists, clinicians, and public health experts seem to generally be moving away from duration-of-life and quality-of-life prioritizations because of the potential biases in their calculations.
For example, he said, “it's an empirical fact that people without disabilities tend to rate the quality of life with a disability much lower than do people who actually have that disability, which is known as the disability paradox.” So, depending on who is rating quality of life in these scenarios, allocating scarce resources like the vaccine based on quality of life could lead to an unjust deprioritization of people with disabilities, he said.
“In terms of duration or maximizing numbers of life-years saved, one concern is that members of marginalized populations, including racial and ethnic minorities, but also people with disabilities, generally have shorter life expectancy, so if you're allocating the vaccine on the basis of life-years saved, you're going to be systematically allocating vaccines away from marginalized populations,” Dr. Tolchin said. “There might also be a strong deprioritization of the elderly who are at greatest risk of death.”
The hope, he said, is that these particular dilemmas can be rendered moot if production and distribution of the vaccine can rise to meet demand in the near future. “Our focus at this point is better directed at what can we do to improve public health education around the vaccine and public acceptance of the vaccine rather than tailoring the most precise protocols of allocation—and I say that as someone who has written allocation protocols and think it's an important thing to do,” he said.
How Do We Improve Equity?
“One of the greatest issues we're seeing is at the level of equitable prioritization, where we continue to see health disparities magnified throughout the COVID-19 pandemic,” Winston Chiong, MD, PhD, associate professor in the department of neurology at the University of California San Francisco (UCSF) Memory and Aging Center and principal investigator of the UCSF Decision Lab, told Neurology Today. “Mortality among Black, Indigenous and Hispanic Americans has been about twice that of White Americans, and yet these groups are about half as likely to receive vaccinations, so we have far to go in getting vaccines to the populations at greatest risk.”
There are many factors contributing to these disparities, he continued. “First, in the initial stages of vaccination, we have broadly prioritized health care workers and people of advanced age. Black, Indigenous, and Hispanic Americans are less represented in these groups, due to underrepresentation in health professions and lower life expectancy. Second, our process of vaccine rollout has been very haphazard, with many people having appointments canceled at the last minute or needing to make repeated calls, or experiencing glitches when trying to make appointments online. These barriers are easier to manage for more advantaged people with more digital literacy, more control over their own schedules, greater mobility and resources for getting to appointments, and who are more connected to the health care system or informational resources. Third, we see greater degrees of vaccine hesitancy in underserved populations, partly linked to the unfortunate history of racism and exclusion in medicine,” Dr. Chiong said.
“There is a perception among many marginalized populations that they receive worse care clinically and that they are often treated as guinea pigs, sometimes without their fully informed consent,” based on experiments that occurred in living memory, Dr. Tolchin said. The health care system has to continue to acknowledge and apologize for these events and not be dismissive of the very real concerns they raise for current vaccine efforts. Partnerships with religious leaders, racial justice advocates, politicians, and other community leaders can be very helpful in rebuilding that trust and are something neurologists and ethicists should be thinking about, he said.
“Neurologists and other clinicians can help to address these issues by advocating for transparent and equitable vaccination policies, and taking time to address their patients' concerns and questions about the vaccines,” Dr. Chiong added.
As the vaccine rollout continues, it's also possible people will develop a preference for one vaccine over another, which may raise additional misgivings about health disparities and equitable allocation, he said.
While some of the upcoming vaccines will likely be distributed based on logistical considerations, including easier storage requirements, “if there is a perception that the mRNA vaccines are better, and if these are then preferentially distributed in highly-resourced settings that serve more privileged patients, then it may appear that we are once again prioritizing the lives of wealthy and privileged people over poor and underresourced people.”
Dr. Chiong said, as a clinician, he would advise patients to take whichever vaccine becomes available to them, but “at a broader level, it will be important to scrutinize decisions about vaccine allocation, particularly as more vaccines become available, and to communicate transparently about the decisions that are made.”
Do We Need Mandates?
There is a strong moral obligation to get vaccinated to protect those around you, even if you are at relatively low risk, Dr. Tolchin said. So the question that often follows is: Should there be a vaccine mandate?
“If you had asked me this four or five years ago and told me there's going to be a pandemic, 500,000 Americans dead, and new variants of the virus emerging, I probably would have said yes.”
“Having seen how the backlash to the vaccine and the suspicion and paranoia that have circulated in many areas of our society about the vaccine, I am afraid that mandates and even significant incentives to get vaccinated are going to backfire,” Dr. Tolchin replied.
Dr. Chiong added that any efforts that ignore the sources of vaccine hesitancy may be counterproductive. “If people have questions about the vaccine based on worries about their own individual medical risk or even conspiracy-based concerns, those need to be addressed directly.”
Looking to the Future
There are still many variables ahead, including the number of vaccines that will be approved, new research on emerging variants and their interaction with different vaccines, and guidance for groups who weren't previously included in clinical trials. Neurologists need to educate themselves on these developments but also be transparent when they don't yet have the answers.
“Although COVID-19 is new, the need to distinguish and acknowledge the difference between the known and the unknown is familiar territory for neurologists,” Dr. Lewis said. “We are accustomed to situations in which ‘only time will tell’...so neuroprognostication frequently requires discussion of the ‘best case,’ ‘worst case,’ and ‘most likely case.’”
We must be nimble during this evolving process, said James Giordano, PhD, MPhil, chief of the Neuroethics Studies Program, co-director of the O'Neill-Pellegrino Program in Brain Science and Global Health Law and Policy in the Pellegrino Center for Clinical Bioethics, and professor in the departments of neurology and biochemistry at Georgetown University Medical Center, quoting Dr. Harold G. Wolf:
“‘Fixity of purpose requires flexibility of method.’ In other words, if we're fixed on the idea that we're going to provide large-scale vaccination we must recognize the methods by which we develop the vaccines, administer the vaccines, and respond to any vaccine effects must be equally rigorous, and yet flexible to sustain the ethical goals and soundness of public health.”
We must be able to reassure the public that we will continue to diligently study the vaccines and monitor individuals before, during, and after vaccination as part of our ethical responsibility, Dr. Giordano said, and we should be ready to commit resources to ensure the continuity of both such research and clinical care every step of the way.
Dr. Chiong said. “I think it's important for neurologists to educate themselves about the different vaccines that are coming out and take time to inquire with patients who have been prioritized to receive the vaccine about whether they have signed up, what challenges they've faced in navigating the system, and what concerns they may have.”
“The vaccination effort is the single most important medical and ethical endeavor of the coming year and I think it behooves all health care workers including neurologists to think about what they can do to help educate their patients and their communities about the importance and safety of the vaccine,” Dr. Tolchin said.