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Institute of Medicine (US) Committee on Guidance for Establishing Standards of Care for Use in Disaster Situations; Altevogt BM, Stroud C, Hanson SL, et al., editors. Guidance for Establishing Crisis Standards of Care for Use in Disaster Situations: A Letter Report. Washington (DC): National Academies Press (US); 2009.
Guidance for Establishing Crisis Standards of Care for Use in Disaster Situations: A Letter Report.
Show detailsAn ethical framework serves as the bedrock for public policy. In developing ethically sound policies for providing health care in disasters, the committee urges policy makers and communities to keep in mind current and past inequities in the allocation of healthcare resources and in healthcare outcomes and try to avoid these in future events through careful policy design. Among the lessons of Hurricane Katrina and other large-scale disasters is that those communities that are most vulnerable before a disaster are likely the most vulnerable during a disaster. Ethically and clinically sound planning will aim to secure equitable allocation of resources and fair protections for vulnerable groups as compared to the general population.
During disasters, healthcare professionals may question whether they can maintain core professional values and behaviors. They wonder if it is possible to uphold core professional values and behaviors in the context of disaster. Is a nurse who provides critical care to 10 patients in a disaster acting unethically, as could be the case under ordinary circumstances? Professionals may ask which choices and standards might properly shift during a disaster, and when core ethical values draw a bright line that separates behaviors that are acceptable from those that are unacceptable. A useful disaster policy will help these persons judge how to act as good professionals even in emergency circumstances.
Ethical Norms
There are many principles that can contribute to an ethical framework. Various authors have articulated principles for public health and disaster ethics (Childress et al., 2002; University of Toronto Joint Centre for Bioethics Pandemic Influenza Working Group, November 2005). We focus here on a limited set of essential elements that reflect both core substantive ethical values and processes, and that can serve as a model or a starting point for local deliberations. Ethical values include the concept of fairness and the professional duties to care and to steward resources. Ethical process elements include transparency, consistency, proportionality, and accountability. Tensions often arise between different ethical principles. Duties to care for individuals and to steward resources may come into conflict, for example. The Guideline Development Working Group should determine how best to weigh competing demands given local values, priorities and available resources.
Fairness
The overarching ethical goal in developing crisis standards of care protocols is for them to be recognized as fair by all affected parties — even including those who might later be disadvantaged by the protocols. All subsequent ethical considerations reflect an effort to achieve such fairness. Fair crisis standards of care protocols will help communities and professionals act using just principles under harsh circumstances. Policy makers must seek to eliminate ways in which irrelevant factors such as class, race, ethnicity, neighborhood, or personal connections shift the burden of disaster toward vulnerable groups. By the same token, if particular groups receive favorable treatment, for instance in access to vaccines, this priority should stem from relevant factors (e.g., greater exposure or vulnerability) and promote important community goals (CDC, 2009c). Policies should reflect awareness of existing disparities in access to care, take account of the needs of the most vulnerable, and support the equitable and just distribution of scarce goods and resources.
Allocation choices based on evidence are one way to reflect the principle of fairness. This report will reference various disaster allocation schemes that rely on measurable and objective clinical parameters to help clinicians make difficult decisions in ways that are clear, consistent, and rational. Under duress, professionals may not be able to create fair allocation schemes in real-time. Disaster planning must include advance ethical guidance. Factors such as do-not-resuscitate (DNR) status have on occasion been considered in allocation schemes. However, DNR orders reflect individual preferences and foresight to establish advance directives more than an accurate estimate of survival. Accordingly, DNR orders are not useful parameters for considering the allocation of scarce resources.
Duty to Care
The primary duty of a health care professional is to the patient in need of medical care. This duty holds true during disasters, including when providing care entails some risk to the clinician (AMA, 2004). Because of this strong and deep obligation, health professionals are educated primarily to care for individuals and less so for populations, although all health professionals also do have important public health obligations (Wynia, 2005). Even in crisis situations, however, clinicians cannot relinquish their obligations to individuals without sacrificing core professional values. The covenant between professional and patient gains rather than loses value in a public health disaster, when members of the community are justifiably frightened and numerous institutions and support systems face great strain. Recognizing that scarce resources may restrict treatment choices, clinicians must not abandon, and patients should not fear abandonment, when an ethical framework informs healthcare disaster policy.
Ethics elements of disaster policies should support the professional’s duty to care. For instance, policies that outline role sequestration, separating those with triage responsibilities from those providing direct care, help preserve the professional integrity of healthcare workers. Those providing direct care can work to improve the health status of their individual patients and will not simultaneously be expected to make decisions that limit care.
While professionals have a duty to care for patients, healthcare institutions have a reciprocal duty to support healthcare workers (The Pandemic Influenza Ethics Initiative, 2009). Personal protective equipment, engineering controls, and a variety of mechanisms to reduce the risk of infection demonstrate institutional obligations to protect workers who face risks in providing care (IOM, 2009b). Various types of disasters might call for other or additional protections to safeguard healthcare workers who face risks, including mental health risks, as they provide care to the community.
Duty to Steward Resources
Healthcare institutions and public health officials also have a duty to steward scarce resources, reflecting the utilitarian goal of saving the greatest possible number of lives. Professionals must balance this duty to the community against that to the individual patient. Though clinicians face this dilemma under ordinary circumstances, the level of scarcity in a public health disaster exacerbates this tension. As scarcity increases, accommodating the two competing duties of care and stewardship will require more difficult choices (Pesik et al., 2001).
There is no uniform answer about how to weigh such competing values, especially when under the duress of time constraints, emotional and physical stress, and while assimilating fluctuating or rapidly emerging new information. Addressing this balancing act under very difficult conditions, with the goal of making decisions that will be recognized as fair under the circumstances, makes it critical to establish ethical processes for decision-making.
Ethical Process
Transparency
Public entities charged with protecting communities during disasters have profound responsibilities. They are called on to plan for foreseeable disasters. They must draw on the best available research, collect and develop expert opinion, and draw attention to gaps in knowledge and resources needed to protect the community. But ethically sound disaster policies require more than technical expertise. These policies must reflect specific values in choices about contested issues, such as priority setting for access to scarce resources and restrictions on individual choice. A public engagement process is crucial for drafting ethical policies that reflect the communities’ values and deserve its trust. However, though various scholars and public entities are currently in the midst of projects that engage the public, the goal of effective community participation in disaster policy development and evaluation is insufficiently realized at this time (CDC, 2009c; Li-Vollmer, 2009; Bernier, 2009; Bernier and Marcuse, December 2005). Given that a more severe influenza pandemic may emerge before the completion of a robust process of public engagement, officials must strive to communicate clearly those plans currently in place, and may also need to rely on real-time communication with communities and after-the-fact review.
A truly inclusive process will not rely only on input from professional groups and other organized stakeholders, but will also incorporate the views of those who are less well represented in the political process, but who may be greatly affected by policy choices. Children and their parents, older adults, persons with disabilities, and racially and ethnically diverse communities are more likely to feel keenly the impact of different choices in priority setting. Policies should reflect their values no less than those of other sectors of society. Enlisting the public to discuss a future disaster when current stressors overwhelm many will prove challenging, but is nonetheless required. An ethical process will likely be iterative, characterized by responsible planning, transparency in underlying values and priorities, robust efforts toward public engagement, response to public comment, commitment to ongoing revision of policy based on dialogue and data, and accountability for support and implementation.
Values that drive policy should be explicitly stated so communities can articulate, examine, affirm or reject, and modify proposed choices. Transparency also implies candor in communication about disasters, from clinicians to patients and throughout all levels of the healthcare system. Limitation of choice for both patients and providers is a reality of disaster and will affect many aspects of healthcare delivery. Professionals and patients will have fewer treatment options. Evidence-based criteria, rather than patient preference or clinical judgment, will determine access to the most limited resources. Though patient autonomy is reduced by the circumstances of disaster, patients still deserve clear information about available choices, respect for preferences within resource constraints, and empathic acknowledgment of the sometimes dire consequences of resource limitation.
Consistency
Consistency in treating like groups alike is one way of promoting fairness. The public may find that scarce resources have not been allocated fairly if patients at different hospitals in the same affected area receive vastly different levels of care. Consistent policies may also help eliminate unfair local efforts to discriminate against vulnerable groups on the basis of factors such as race or disability. However, efforts to keep policies consistent across institutions or geographic regions may limit local flexibility in implementing guidance. The capacity for local communities to reflect their values in allocating scarce resources stands in tension with the goal of promoting consistency. Flexibility is necessary, but requires careful deliberation and documentation where local practices do not follow common guidance.
Proportionality
Disaster policies will include aspects that are burdensome to individuals and professionals. Burdens such as social distancing, school closures, or even quarantine should be necessary and commensurate with the scale of the public health disaster. Those restrictions imposed must serve important public needs, such as the need to limit spread of an infectious agent, and must be appropriately limited in time and scale according to the scope and severity of the disaster.
Accountability
Effective disaster planning will require individuals at all levels of the healthcare system to accept and act upon appropriate responsibilities. As part of their duties to care and to steward scarce resources, individual clinicians are responsible for a good faith effort toward education in important disaster-related concepts and knowledge of local planning efforts (AMA, 2004). Local facilities are accountable for disaster policies. Government entities are accountable to their communities to plan and implement policies related to disasters, and members of the community must know which entities take responsibility for various elements of disaster policies. For instance, practitioners concerned about the provision of personal protective equipment should know which entity is accountable for that domain and to whom they should address concerns. All decision-makers should be accountable for a reasonable level of situational awareness and for incorporating evidence into decision-making, including revising decisions as new data emerge. Like transparency, consistency and proportionality, accountability before, during and after a disaster is a key ingredient in building and maintaining trust.
Applying the Ethics Framework: Ventilator Allocation
The ethics framework described above serves as a guide in developing disaster policies. We examine here the hard choices involving the allocation of ventilators, beginning at the systems level and then for individual patients. Ventilators, of course, are only one of many elements that may sustain the life of a critically ill patient. Appropriate surge planning will balance the need to stockpile a range of critical resources, as well as staff and space to provide treatment. However, ventilator allocation serves as a useful example of decision making under conditions of scarcity for several reasons. Ventilators are large and expensive; facilities cannot provide more than a certain number of ventilators, even when all surge resources are in play. Furthermore, ventilators require trained staff to operate them and availability of necessary medications, and thus depend on the additional scarce resources of personnel and drugs. In an influenza pandemic, severe respiratory illness will also increase the need for and scarcity of ventilators. Finally, a ventilator is a discrete resource that cannot be titrated or shared effectively, and whose absence is highly likely to result in death.
First, we will examine ventilator allocation as applied to a specific group. A number of disaster policies address the controversial issue of how chronically ventilator-dependent patients figure in triage schemes. The VHA provides a thoughtful review of this problem, contrasting two different policy choices (The Pandemic Influenza Ethics Initiative, 2009). It notes that the New York State Task Force on Life & the Law argued for exempting patients in long-term care facilities from ventilator triage protocols because extubation of stable chronic care patients would force clinicians in long-term care facilities into an unacceptable reversal of their caring role (NYSDOH/NYS Task Force on Life & the Law, 2007). Moreover, the reallocation of ventilators from chronic care patients would impose an unfair burden on the disabled, in part based on subjective quality-of-life judgments rather than on more objective estimates of survival. The Task Force found that patients in chronic care facilities should maintain access to ventilators while in those facilities. However, if transferred to an acute care facility, such patients should enter the triage system. In contrast, the World Health Organization concluded that chronic care patients should be included with all other patients in triage protocols, holding that all must share the sacrifice involved in triage equally (WHO, 2006). The VHA found that viable ethical arguments could support either position. The VHA chose to exclude from triage protocols those patients chronically supported by ventilators and living in long-term care facilities or at home, arguing that this choice represented the best available balance between the duty to care and to exercise stewardship of scarce resources.
Regarding ventilator allocation as applied to individual patients and healthcare professionals, disaster plans must minimize the need for such painful choices by requiring that all possible steps to augment and substitute for scarce resources precede any reallocation of scarce resources. Yet, if need sufficiently overwhelms resources, not all patients who might benefit from critical care resources can receive them.
Alternative allocation criteria could proceed on a first-come, first-served basis or through a lottery system, but either of these systems would result in excess mortality because some patients who receive ventilator treatment will die, and others who might have survived will die without it. Thus, this model of allocation would not uphold the duty to steward resources wisely and save the greatest possible number of lives. Several disaster policies reviewed by this committee require the use of evidence-based tools to assess the likelihood of benefit from critical care resources, and the reallocation of such resources under conditions of ex treme scarcity to patients with the greatest likelihood of benefit when a clear and substantial difference in prognosis exists. These policies comport with an ethical framework that stewards resources and saves the greatest number of lives. It is important that these policies be explained, discussed, and considered by states developing crisis standards of care.
Many clinicians are justifiably troubled by the prospect of discontinuing life-sustaining treatment from a patient in a disaster, even though the purpose is to save lives. Clinicians at the bedside working under extreme circumstances deserve clarity, and without it they may be reluctant to implement a disaster standards of care protocol. Certainly, critical care physicians may discontinue life-prolonging treatment in response to a patient’s request. The disaster context is agonizing because treatment could be withdrawn without or against the patient’s expressed wishes. Ventilator withdrawal also requires an order not to resuscitate because resuscitation efforts require the use of ventilators. Outside of crisis situations, these orders typically require consent of patients or their surrogate decision makers, but disaster triage protocols may permit doctors to initiate such orders when life-sustaining treatment is reallocated.
What a disaster triage policy based on the duty to steward resources would do is effectively override individual patient preferences and instead supply resources based on evidence-based assessments of the benefit of the treatment relative to its scarcity. Thus, treatment offered in circumstances of a disaster should be understood as provisional—if the intervention is unsuccessful, it may be discontinued in order to provide the best possible care to as many as possible.
When resource scarcity reaches catastrophic levels, clinicians are ethically justified in using those resources to sustain life and well-being to the greatest extent possible. In the case of discontinuing life-sustaining treatment such as a ventilator, clinicians look to all ethical elements of the framework, starting with the principle of fairness. This hard choice stems from adherence to the duties to provide care and steward resources and follows guidance for ethical processes, including transparency, consistency, proportionality, and accountability.
Despite removing a vital treatment, a clinician must continue to provide compassionate care. In stewarding resources, palliative care will be prioritized to those critically ill patients who do not meet allocation criteria for scarce resources.
Transparency regarding limited resources forms a critical part of communication even before, but certainly during, a patient’s hospital admission. Clinicians and facilities need to inform patients and families of the time-limited nature of trials of ventilator therapy and other scarce resources. Consistency in applying evidence-based triage tools helps guarantee fairness in access to resources, and provides professionals a clear rationale for triage decisions. Proportionality requires that this drastic infringement on the autonomous choice of patients or the professional judgment of clinicians is not invoked unless all other reasonable surge strategies have been implemented. Finally, accountability demands that professionals follow triage guidelines for assigning scarce resources and can support their decisions based on good-faith efforts to adhere to disaster policies. Professionals reasonably insist that adequate legal protection must accompany this shift from ordinary to crisis standards of care.
Crisis standards permit clinicians to allocate scarce resources so as to provide necessary and available treatments to patients most likely to benefit. Crisis standards do not permit clinicians to simply ignore professional norms and act without ethical standards or accountability. Crisis standards justify limiting access to scarce treatments, but neither the law nor ethics support the intentional hastening of death, even in a crisis.
Recommendation 2: Adhere to Ethical Norms in Crisis Standards of Care
When crisis standards of care prevail, as when ordinary standards are in effect, healthcare practitioners must adhere to ethical norms. Conditions of overwhelming scarcity limit autonomous choices for both patients and practitioners regarding the allocation of scarce healthcare resources, but do not permit actions that violate ethical norms.
- ETHICAL FRAMEWORK - Guidance for Establishing Crisis Standards of Care for Use i...ETHICAL FRAMEWORK - Guidance for Establishing Crisis Standards of Care for Use in Disaster Situations
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