By J. Eline Garrett, J.D., Dorothy E. Vawter, Ph.D., Angela W. Prehn, Ph.D., Debra A. DeBruin, Ph.D., and Karen G. Gervais, Ph.D.
Although the timing and severity of the next influenza pandemic is impossible to predict, there is broad agreement that one will occur. Preparation is vital to mitigating its effects. A severe influenza pandemic like that which began in 1918 would be unlike other disasters in nature, scale, and duration. It could cripple normal business operations and disrupt global distribution of essential goods and services. It could force ethical decisions that many in a country accustomed to relative abundance are poorly prepared to make. Although sound evidence and clinical and public health expertise are needed to make informed decisions, so is an understanding of our common and diverse values. This article outlines some of the challenges the state would face during a pandemic, especially concerning the rationing of resources and care. It also describes a process currently underway to develop guidelines for how the state should approach the ethical questions that would arise.
Public health officials around the world are developing plans for handling an influenza pandemic in response to experts’ warnings that a widespread outbreak of the respiratory virus is inevitable. A pandemic occurs when a new strain of virus—one to which humans have not developed immunity—becomes highly contagious and spreads across continents. But knowing when such an outbreak might happen is impossible to predict. This difficulty is noted in the following excerpt from a U.S. Department of Homeland Security report on our national strategy for pandemic influenza: “The widespread nature of H5N1 in birds and the likelihood of mutations over time raise our concerns that the virus will become transmissible between humans, with potentially catastrophic consequences. If this does not happen with the current H5N1 strain, history suggests that a different influenza virus will emerge and result in the next pandemic.”1 Thus, preparation is vital to mitigating the effects of a future pandemic.2
Pandemics can vary greatly in severity. The last century saw 3 influenza pandemics—one that started in 1918 and ended the following year, one in 1957, and one in 1968. The effects of the pandemics of 1957 and 1968 were moderate in the United States (70,000 and 33,000 estimated deaths, respectively) and resembled exaggerated versions of typical seasonal influenza epidemics.3 The pandemic of 1918, however, differed dramatically because of the significant mortality rate associated with it (an estimated 675,000 people died in the United States and 30 million to 50 million people perished worldwide), which triggered massive social and economic change and disruption.4 In New York City alone, 21,000 children were orphaned.5 Although economic data from the period are scarce, newspaper accounts say that the effect on businesses unrelated to health care was severe, with some businesses reporting declines of 40% to 70% at times. Absenteeism curtailed telephone and railroad services as well.6
What was also extraordinary about the 1918 pandemic was not only how many people died but also who was affected. Typically, seasonal influenza poses the greatest threat to infants and elders along with people whose immune systems are compromised. Those same groups were at greatest risk for complications and death during the 1918 pandemic. But also affected was a surprisingly healthy cohort: older adolescents and adults ages 15 to 40.7 Young healthy adults often died within a couple of days of contracting influenza, whereas very young children and older adults tended to die from influenza-related complications weeks after becoming ill. The explanation for the unusual pattern of mortality among healthy young adults remains speculative.7 Experts now estimate that a virus equivalent in pathogenicity to that which emerged in 1918 could kill more than 100 million people worldwide over the course of a 2-year, multi-wave pandemic.8 In the United States alone, an estimated 1.9 million people could die, including 32,900 Minnesotans. In comparison, seasonal influenza and pneumonia take the lives of approximately 36,000 Americans, including 600 Minnesotans, annually.9
Severe pandemic influenza occurs on a scale that distinguishes it from other public health disasters both in nature and scope. It occurs over years, not days, weeks, or months, and it threatens core infrastructures. Unlike a mild pandemic, which would occur if a new virus were not as contagious and pathogenic as the 1918 virus, a severe pandemic has the potential to cripple business operations and disrupt global distribution of essential goods and services.10 During a severe pandemic, states and communities cannot count on receiving assistance from the federal government or elsewhere as they might in another disaster primarily because the needs would be so extraordinary and widespread. Additionally, both the public and private sectors would be working under a burden of absenteeism. Its ability to cripple the way society functions makes planning for a severe pandemic unique.
History is clear about the importance of having a sound pandemic response. Minneapolis fared better in the 1918 pandemic than St. Paul in part because of the way it responded. Minneapolis, for instance, focused earlier on proactive measures such as closing public schools, whereas St. Paul emphasized identifying and isolating persons after they became ill. The result was that Minneapolis had a case fatality rate nearly one-third that of St. Paul (5.2% versus 14.7%, respectively).11 Although planning is underway at the federal level, the government has made it clear that states should develop their own pandemic plans, including plans for rationing scarce resources such as vaccines, antivirals, N95 respirators and surgical masks, and mechanical ventilators.3 Planning is also well underway in Minnesota, as the state, local public health agencies, health care institutions, and many businesses prepare for a possible pandemic.12
Facing the Hard Questions
A severe influenza pandemic could force decisions that many in a country accustomed to relative abundance are poorly prepared to make. Resources of all kinds would be in short supply because of interrupted supply chains, travel restrictions, and absenteeism in the manufacturing, shipping, retail, and wholesale sectors. The federal government estimates that during the peaks of a severe pandemic, absenteeism because of illness, caretaking, or fear could reach 30%.3 The list of ethical quandaries in a severe pandemic could be daunting: Who should get vaccines and medical treatment first and why? Who should get care in hospitals and who should be relegated to nontraditional settings such as convention centers and church basements? When, if ever, should patients be removed from mechanical ventilation in order to give those who are likely to respond better a chance? Who should decide this? State officials? Individual doctors and nurses? Community groups? Should treatment priority be given to persons at greatest risk of death, those most likely to benefit, or state leaders? Should the decision be made randomly, say by tossing a coin when more than 1 person needs treatment and not all can be served? Should some groups be given priority over others based on age? To what extent should essential workers such as clinicians or police officers have priority over others in the general population for receiving treatment?
The alternative to rationing is stockpiling potentially useful resources. But stockpiling presents a different set of ethical questions: How much should be invested in stockpiling and what should be stockpiled? Who should stockpile? Individuals? Businesses? Local, state, tribal, or federal governments? What obligation, if any, should those who stockpile have to share resources?
Health care organizations also face their own unique ethical concerns: How should hospitals and clinics weigh their obligation to provide care against placing staff at risk? What guidelines and legal protections should be in place to support changes in standards of practice and ethical duties owed to patients? What guidelines for compensation, penalties, or mandates should be put into place?
Many responses to a pandemic would challenge individual rights and freedoms. Thus, there would have to be discussion about the extent to which privacy concerns should give way to the need for rapid disease surveillance. Disease containment strategies such as quarantine, isolation, and social distancing could have a huge effect on people’s mental health and livelihoods. For some children, school meal programs are a major source of daily nutrition. Therefore, questions about whether schools and businesses should be forced to close, and for how long, would also need to be addressed.
At the Heart of Decisions
All of these ethical issues would require thoughtful, informed public deliberation. The discussion should be based on sound clinical, public health, and basic scientific evidence. In addition, it should be grounded in ethical values that are widely shared. This can be very difficult to achieve, given the differences inherent in a diverse society. Unfortunately, the literature on disaster ethics is not well-developed.
Minnesota is making important contributions in the area of ethical guidance, especially around the issue of rationing in the event of a severe influenza pandemic. In December 2005, the Minnesota Center for Health Care Ethics (MCHCE) embarked on the first of what would become a series of statewide efforts to address ethical issues in pandemic planning. MCHCE, based in Minneapolis, is sponsored by Fairview Health Services,
HealthEast Care System, and the Sisters of St. Joseph of Carondelet. These organizations, each of which was engaged in its own pandemic planning, identified a need for community collaboration around ethical issues—issues that are too complex for any single entity to resolve independently.
With its sponsors’ support, MCHCE convened a pandemic influenza ethics work group that included approximately 35 people from around the state who had experience with and expertise in health care ethics, public health, infectious disease, administration, spirituality and faith, journalism, economics, law, and community service. This group chose to focus on developing an ethical framework for the rationing of scarce vaccines in Minnesota during a severe influenza pandemic. Its recommendations were issued in 2006 and later published in Vaccine.2
The framework consists of ethical principles, goals, and strategies for rationing, and was accompanied by a sample plan to illustrate how it could work during an actual pandemic. Members of the work group brought their diverse ethical values to the discussions, and the deliberations were challenging but productive. Participants considered different models, each of which focused on a particular ethical commitment, such as responding to medical need, minimizing mortality, or preserving social and economic stability. These models provided common ground for discussion. Group reflection on each one’s strengths and weaknesses helped participants achieve broad agreement on a set of shared values and provided a direction for building a rationing plan.
In brief, the MCHCE framework calls for directing vaccines in a way that would improve Minnesotans’ chances of surviving the dual threats of influenza and infrastructure collapse both during the pandemic and afterward. It calls for giving high priority to workers who are essential to basic health care, public health, and public safety, as well as those in the general population who are at greatest risk of death from influenza and its complications and who are likely to respond well to the vaccine.
In late 2006, the Minnesota Department of Health, which had participated in the vaccine rationing project, issued a request for proposals for development of ethical guidance for statewide rationing of a wider range of health-related resources. The MCHCE and the University of Minnesota’s Center for Bioethics were awarded the contract jointly and last year kicked off the Minnesota Pandemic Ethics Project. The project brings together more than 100 Minnesotans from the public, private, academic, and nonprofit sectors to develop recommendations for rationing health resources. Specifically, the project is considering shortages of antivirals for both treatment and prevention, N95 respirators, surgical masks, vaccines, and mechanical ventilators.
Broad agreement has been reached on a core set of ethical goals and values, and this agreement has allowed for the development of a set of preliminary statewide recommendations about how resources should be rationed under different conditions. Some issues have remained unclear or controversial and will be the subject of more extensive public discussion and reflection. Public input on the draft recommendations will be sought, and the recommendations will revised in light of this feedback. (The MCHCE’s website, www.stolaf.edu/mnethx, and the University of Minnesota Center for Bioethics’ website, www.ahc.umn.edu/bioethics, will have links to the draft recommendations later this spring.)
Discussions about values and ethical issues are challenging. They are even more so in a situation such as a severe influenza pandemic, where decisions about who will and will not receive scarce resources can have grave consequences. The Minnesota Pandemic Ethics Project is attempting to address such issues and to assist Minnesota in reaching some agreement well in advance of a pandemic. We all hope that the next pandemic will not be severe; but if it is, public deliberations such as those undertaken in this project should help guide some of the most difficult decisions that will have to be made. MM
J. Eline Garrett, Dorothy Vawter, Angela Prehn, and Karen Gervais are members of the Minnesota Center for Health Care Ethics. Debra DeBruin is a faculty member of the University of Minnesota Center for Bioethics. All are members of the Pandemic Ethics Project Team.
Additional members of the team include the following individuals from the University of Minnesota Center for Bioethics: Jeffrey Kahn, Ph.D., M.P.H., Joan Liaschenko, R.N., Ph.D., FAAN, J.P. Leider, Mary Faith Marshall, Ph.D., Steven Miles, M.D., Elizabeth Parilla, Carol Tauer, Ph.D., and Susan M. Wolf, J.D.
Funding for the Minnesota Pandemic Ethics Project is provided by the Minnesota Department of Health.