Building on her work facilitating community meetings about allocating scarce medical resources during a public health crisis, Senior Mediator Beth Weaver offers reflections for the COVID-19 pandemic.
Community Perspectives on Allocating Scarce Medical ResourcesWhat I have learned about community perspectives on allocating scarce medical resources during a public health crisis like the COVID-19 coronavirus pandemicRecent media reports have drawn attention to the ways in which the COVID-19 coronavirus pandemic is overwhelming healthcare systems and forcing medical professionals worldwide to grapple with difficult ethical decisions regarding who gets access to medical supplies and life-sustaining resources (e.g., a ventilator or bed in the intensive care unit) when the need surpasses the supply. We have all seen reports about rationing critical medical resources in China and Italy, and officials in the United States have sounded the alarm that this is starting to be the case in the United States and other countries.In 2009, the Institute of Medicine (IOM) issued a report on how state governments can establish guidelines for providing care and allocating critical resources during extreme public health crises. These guidelines – called Crisis Standards of Care (CSC) – help medical professionals decide how to change their practice when there are not enough resources for all patients or it is otherwise impossible to provide the usual level of care. Given the complex and ethical nature of these decisions, the report encourages states to gather input from the public regarding values and priorities for allocating scarce, life-sustaining resources before a crisis hits.Since the release of the IOM report, several U.S. states have made efforts to develop these kinds of decision-making guidelines. Some have published these guidelines (for example, Minnesota, New York, and Washington State have developed detailed guidelines for allocating resources during public health emergencies), some states are currently in the process of drafting guidelines, and others lag behind. Additionally, the U.S. Centers for Disease Control and Prevention produced a report in 2011 outlining general principles for making these kinds of decisions during public health emergencies. Several other countries have also developed guidance on this issue.In recent years, RESOLVE has collaborated with ethicists and medical experts to design and lead community engagement efforts on this issue, facilitating more than three dozen public meetings to explore community members’ diverse values and perspectives on the issue. In each of these meetings, over the course of several hours, we presented a fictitious scenario about a public health crisis (such as a pandemic) to prompt discussions and inform group exercises designed to explore ethical considerations and community values about rationing and potentially withdrawing life-sustaining medical support. These meetings also included the use of individual surveys and provided the opportunity for participants to ask questions of emergency preparedness and medical experts. Participants were encouraged to consider the pros and cons of various approaches to allocating scarce medical resources and to share thoughts about what additional information or considerations could be useful for decision-making. These meetings gave participants a safe, structured space to weigh in on factors such as whether priority care should be given to certain groups of patients and what they saw as “fair” in such situations. These community engagement efforts emphasized inclusion of diverse perspectives across ethnicity, age, and religion as well as across urban and rural communities. The data collected were anonymized and shared with state officials to consider in concert with input from state and local medical experts and national best practices for allocating medical resources during an emergency.Most communities have likely not had the opportunity to engage in community outreach on this topic in advance of the COVID-19 pandemic, and existing emergency preparedness plans may not include clear, consistent guidance on how to allocate scarce resources during this kind of crisis. As attention is now focused on developing these plans, I offer reflections from facilitating numerous public discussions on this topic in a variety of communities and based on my review of recent articles and literature on this topic. I highlight the most common allocation approaches discussed in the public meetings RESOLVE facilitated, as well as some of the frequent reactions, common themes, and tensions articulated by participants. The allocation approaches discussed below are not the only approaches available, nor are the viewpoints described the only perspectives held by the public. I do not mean to suggest that these insights hold the answers to the challenging questions about how to allocate scarce medical resources, but rather highlight the difficult and nuanced task of fairly and effectively allocating life-sustaining resources during a pandemic.Potential ApproachesSaving the Most LivesMany people emphasized the value in prioritizing care in a way that would ultimately save the most lives. This could include prioritizing care for people who have the best chance of surviving or prioritizing care for those who may have the best chance for longer-term survival. It could also include using resources in as efficient a manner as possible (e.g., prioritizing those likely to recover quickly); some felt that to do otherwise was to misuse the critical resources and reduce the chance of doing the most good for the most people. Some participants noted that a patient’s chance of survival should only factor into care prioritization in extreme cases, such as when it is nearly certain he or she will not survive or that treatment will be ineffective. Participants often pointed out that saving someone who cared for several other individuals (e.g., parents or caretakers) could ultimately translate into saving the lives of those for whom they care.Saving the Most Life YearsWe heard a wide array of views on whether or how to prioritize care based on age or the number of life years ahead. Some participants believed that younger patients should be prioritized because they theoretically have the most life years ahead of them. (Regardless of their personal opinions, many noted that deference for youth reflects a western – specifically American – bias that should be checked, especially in communities or cultures that traditionally place an emphasis on valuing respect for elders.) Some suggested that patients in the middle or later years of life may possess certain skills, strengths, or wisdom that could be useful during or after a crisis, while others highlighted the societal value of having people of all age groups present after a crisis and suggested developing a framework for providing care that protects all generations. Some participants suggested the quality of life of surviving patients should be considered in allocation decisions, while others noted that quality of life is a subjective concept with differing interpretations.Prioritizing Healthcare ProvidersMany participants noted it would be valuable to prioritize healthcare providers or emergency responders because they would have the professional expertise to directly help respond to the crisis. Others noted that other professions, such as government officials or those manufacturing essential supplies, are also critical to a community – both during a crisis and during post-crisis recovery – and that it is important to ensure a diversity of expertise is preserved. Others suggested that an individual’s value should not be tied to their profession or knowledge and that assessing social utility and using that as a criterion for medical care prioritization would be complicated, subjective, and potentially discriminatory.Prioritizing Care to Vulnerable PopulationsParticipants frequently emphasized the importance of providing equal access to care for all and felt an individual’s special circumstances (e.g., income level, disability, language spoken, pre-existing conditions, lack of access to regular care) should not disadvantage him or her from receiving treatment. Some noted that those who are especially susceptible to the particular disease causing a pandemic (in the case of COVID-19, those over the age of 60 or with other complicating medical circumstances) should receive priority treatment. Others suggested pregnancy should be considered a vulnerability and that pregnant women should receive prioritized care. People routinely indicated that ability to pay for medical care should not have any bearing on whether an individual should be administered care during a crisis.Chance-Based PrioritizationMany participants expressed aversion to chance-based prioritization processes, such as using a lottery system or a “first come, first served” approach; some worried such processes eliminated important considerations and removed critical thinking from decision making. For example, lotteries do not take into consideration a patient’s chance of survival, medical history, or social utility. Some suggested a lottery may be the fairest approach when determining how to allocate resources among two or more patients who otherwise rank similarly after applying other allocation criteria. Other participants favored a chance-based approach because they perceived it to be easier to administer and enforce without biases influencing decision-makers.Other ConsiderationsReallocating Life-Saving Resources from One Patient to AnotherOne of the most controversial and challenging questions discussed was whether there were any circumstances in which medical providers should remove life-saving resources (such as a ventilator) from one patient to give to another. Some people we spoke with strongly supported resource reallocation as a method for using resources in a way that is most likely to preserve lives. Others strongly opposed reallocation, believing that once a patient receives potentially life-saving resources, that person has a right to sustained care until recovery or death. The issue of reallocation, often discussed in relation to patients’ chances of survival, raised questions for many about the subjectivity and accuracy of survival prognoses.Many people indicated it was acceptable to reallocate resources with consent from the relinquishing patient or if a patient volunteered to forfeit his or her resources to someone else. Many also felt it would be appropriate for immediate family members to make this decision on behalf of an unconscious patient. Some participants voiced concern about reallocation in principle because they felt that withdrawing the resources from a patient would leave medical professionals, who take an oath to ‘do no harm,’ open to ethical distress or potential legal risk. Many noted that if reallocation was allowed, there should be clear guidelines describing the allowable circumstances in which reallocation could occur and that any such guidelines should be consistent with the framework originally used to allocate care.Consistent Application and CommunicationAs noted in an earlier blog post, transparent communication about how decisions are made is critical. And, it is extremely important to be consistent with how those guidelines are applied as perceptions of bias or favoritism could sow public distrust. Further, it is essential to provide comprehensive, accurate, consistent, and timely information; public health officials are often trusted sources of information.Most participants in the meetings RESOLVE facilitated took these issues very seriously and wrestled with the gravity of the decisions medical professionals may have to make. We were impressed with the way in which participants were respectful of other opinions and open-minded to other perspectives. We were also heartened by the near-universal desire to zealously look for ways to “solve” the resource problem by suggesting opportunities for sharing treatment among patients, producing more resources, or otherwise preventing shortages. If this desire is representative of people in communities around the world, we should all be encouraged by the creative ideas and fervent motivation to limit the scale and impacts of the crisis.Beth WeaverRESOLVEMarch 24, 2020
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