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Committee on Guidance for Establishing Crisis Standards of Care for Use in Disaster Situations; Institute of Medicine. Crisis Standards of Care: A Systems Framework for Catastrophic Disaster Response. Washington (DC): National Academies Press (US); 2012 Mar 21.

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Crisis Standards of Care: A Systems Framework for Catastrophic Disaster Response.

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4Cross-Cutting Themes

Issues related to ethics, palliative care, and mental health cut across the sector-specific guidance offered in Chapters 5-8 and are relevant at each stage of a disaster response. These issues are discussed in detail in this chapter; relevant aspects of each are reiterated in Chapters 5-8 where applicable.

The ethical allocation of scarce resources, discussed in the first section of this chapter, underlies any discussion of crisis standards of care (CSC). The committee’s 2009 letter report recognized seven key features of ethics on which CSC must stand: (1) fairness, (2) the duty to care, (3) the duty to steward resources, (4) transparency, (5) consistency, (6) proportionality, and (7) accountability. The framework of these key features sharply distinguishes between clinical practice that is acceptable in an environment of scarce resources and behaviors that are unacceptable regardless of the resource environment. However, the framework goes further to make the case that each stakeholder group—from the public, to health care providers, to health care institutions, to governments—has certain responsibilities and is afforded certain protections during a disaster.

The ethical framework lists fairness as its first operating principle. In doing so, it recognizes that the environment of a catastrophic disaster necessarily means it may not be possible to give everyone the care needed to survive. The framework recognizes that being unable, because of the situation, to provide all desired or even required services to each individual is not inherently unfair. Rather, fairness relates to how limited resources are distributed in these unusual situations. The second section of this chapter, therefore, addresses the importance of providing palliative care when curative care is unavailable and describes ways to strengthen this aspect of disaster response planning and implementation.

The third section addresses the issue of mental health, which, like palliative care, must be incorporated into CSC plans and affects their implementation at all levels of a disaster response. The discussion of this issue explores recent examples that demonstrate comprehensive plans to consider the mental health needs of the general public and those involved in a disaster response. It also explores how mental health care is a vital component of community resilience. Building on past progress, the committee posits essential elements of mental health care during and after a disaster strikes.

Each of these three cross-cutting issues directly impacts individuals and organizations responsible for developing and implementing CSC plans. This chapter should therefore be viewed as an accompaniment to Chapters 5-9. Application of the principles set forth in this chapter is necessary to ensure a holistic and humane disaster response.

ETHICAL FRAMEWORK

As noted above, the committee’s 2009 letter report outlined an ethical framework to serve as the basis for designing ethically and clinically sound policies for CSC. In constructing this framework, the committee kept two key concepts in mind. First, groups that are most at risk before a disaster are those most vulnerable during a disaster. Ethically and clinically sound planning will aim to secure equivalent resources and fair protections for these at-risk groups. Second, some health care professionals question whether they can maintain core professional values and behaviors in the context of a disaster. Providers ask how to recognize when core ethical values draw a clear line separating behaviors that are acceptable during a disaster from those that are unacceptable at any time. An effective framework can help guide those who wish to behave as ethical professionals even in the austere circumstances imposed by a public health emergency. The committee reiterates its recommendation from the letter report:

Recommendation: Adhere to Ethical and Professional Norms in Crisis Standards of Care. When crisis standards of care prevail, as when ordinary standards are in effect, health care practitioners must adhere to ethical and professional norms. Conditions of overwhelming scarcity limit autonomous choices for both patients and practitioners regarding the allocation of scarce health care resources, but do not permit actions that violate ethical norms. (IOM, 2009, p. 6)

The above recommendation sets hard limits on ethically acceptable behavior, irrespective of conditions of scarcity or other aspects of public health disasters. CSC not only do not condone but are specifically designed to prevent the commission of acts that are clearly outside of ethical standards at any time. Instead, CSC incorporate ethically and clinically viable guidance on how to adjust clinical actions under austere conditions.

Key Features

The ethical framework set forth in the letter report includes substantive and process features and should support ethical behavior for those at every level of disaster response, from government planners to individual providers. Its key features are as follows:

  • fairness,
  • the duty to care,
  • the duty to steward resources,
  • transparency,
  • consistency,
  • proportionality, and
  • accountability.

Each of these features is discussed in turn below.

Fairness

An ethical policy does not require that all persons be treated in an identical fashion, but does require that differences in treatment be based on appropriate differences among individuals. If particular groups receive favorable treatment, such as in access to vaccines, this priority should stem from such relevant factors as greater exposure or vulnerability and/or promote important community goals, such as helping first responders or other key personnel stay at work (CDC, 2009). Policies should account for the needs of the most at risk and support the equitable and just distribution of scarce goods and resources.

Different communities may have different priorities for allocating scarce resources in a catastrophic disaster. Through appropriate public engagement processes (Chapter 9), for example, some communities may decide that such factors as age or function within the community (e.g., first responder) should be considered in allocating scarce resources in a catastrophic disaster. However, community preferences should adhere to parameters set by ethical norms and laws. For instance, irrespective of community views, it would not be ethically or legally viable for a community to refuse to provide health care resources to inmates in a local prison or to disabled residents of a residential facility. Similarly, both ethical standards and existing laws prevent communities from allocating scarce health resources on the basis of such irrelevant factors as race, ethnicity, or religious affiliation. Public health authorities are urged to engage their communities in setting priorities within appropriate ethical and legal parameters. Particular attention is due to those whose vulnerabilities and specific needs require accommodation in disaster plans. Relevant groups might include those with mobility impairments, existing significant medical conditions, pharmacologic dependence, lack of English language proficiency, or other ethnic or cultural needs (HHS, 2011).

Duty to Care

Health professionals, by virtue of their training, have an obligation to provide care, especially during a disaster. However, they are educated to care for individuals rather than for populations and thus may need to adjust the goals of care as dictated by the situation. Recognizing that scarce resources may restrict treatment choices, clinicians must not abandon, and patients should not fear abandonment, when a catastrophic disaster forces a shift to CSC. Ethical elements of disaster policies should support the professional’s duty to care. For instance, policies should separate triage responsibilities from the provision of direct care whenever possible. Those caring for individual patients should work to improve those patients’ health and not simultaneously make decisions intended to benefit the group rather than the individual patient.

While professionals have a duty to care for patients, health care institutions have a reciprocal duty to support health care workers (Pandemic Influenza Ethics Initiative Workgroup of the Department of Veterans Affairs, 2009). Personal protective equipment, engineering controls, and a variety of other mechanisms to reduce the risk of infection operationalize institutional obligations to protect workers who face risks in providing care (IOM, 2010).

Of note, the health care professional’s duty to provide care is neither absolute nor likely to be the only ethical obligation he or she faces. School closures and other shifts in services during a disaster may increase family obligations just when a professional is most needed at work. Among nurses, the vast majority are women, and many have primary child care responsibilities. A nurse who is also a responsible parent cannot leave a minor child at home unattended because of the duty to provide health care. Similarly, many emergency medical services (EMS) workers are volunteers who have full-time jobs and/or family responsibilities. These workers, too, face conflicting ethical obligations. As a logistical matter, such workers may not be available to serve for EMS during a disaster, and planning efforts should address this possibility. The reality of conflicting ethical obligations leads back to the concept of reciprocal obligations from systems to those who serve within them. An ethically robust disaster response system should provide support that permits critical workers to meet personal obligations so they will also be able to meet professional obligations.

Duty to Steward Resources

Health care institutions, public health officials, physicians, and other health care professionals have a duty to steward scarce resources. The context of disaster, by definition, creates scarcity, since demand overwhelms supply. Ill-considered and wasteful use of limited medicines or other critical material may result in unnecessary deaths. The goal of preserving lives requires that professionals accept the responsibility to plan and to use resources prudently. As scarcity increases, balancing the obligation to honor the duties of care and stewardship will require more difficult choices (ACEP, 2006, 2008; Iserson and Pesik, 2003).

Transparency

A public engagement process is crucial for drafting ethical policies that reflect a community’s values and merit its trust. Officials should communicate clearly those plans currently in place, and should also work with the community to ensure that policies reflect local values and preferences. An inclusive process will incorporate input from professional groups and other organized stakeholders, as well as from those who are less well represented in the political process but may be greatly affected by policy choices. 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 (see the detailed discussion in Chapter 9). Public engagement events in Harris County, Texas, on pandemic influenza issues (sponsored by Harris County Public Health and Environmental Services [HCPHES]) and in Seattle (Washington), Minnesota, and Michigan in conjunction with their guidance on the allocation of scarce resources illustrate the public interest in participating in the process and the valuable feedback these events provide for policy makers (see also Chapter 1). For example, the series of eight day-long public engagement events held in Harris County, Texas, in summer 2011 saw diverse participation from more than 600 members of the general public (Shah, 2012). Thirty service organizations were represented at a corresponding day-long stakeholder engagement event as well (Shah, 2012). The outcome of these events was productive identification and subsequent discussion of the community’s underlying values in allocating scarce resources during a disaster such as pandemic influenza. Officials at HCPHES reported to the committee that these deliberations are being incorporated into ongoing pandemic influenza planning efforts, including plans drafted by the Harris County Committee on Pandemic Influenza Medical Standards of Care. In addition to these public engagement efforts, HCPHES hosted more than 100 participants for a 2.5-day mass care/mass fatality planning workshop in summer 2011 aimed at convening multisector response partners who would have important roles in a severe influenza pandemic (Shah, 2012). Finally, the Louisiana Pandemic Flu Clinical Forum has engaged hospitals, providers, ethicists, religious leaders, attorneys, and the public to develop a CSC plan that addresses an extreme scenario—similar to that in the movie Contagion—wherein the severity of morbidity and mortality far exceeds the collective resources of health care available throughout the state or the nation (Louisiana Department of Health and Hospitals, 2011).

Consistency

Consistency in treating like groups alike is one way of promoting fairness. The public may feel that scarce resources have not been allocated fairly if patients at different hospitals in the same affected area receive vastly different levels of care. At the same time, however, efforts to keep policies consistent across institutions or geographic regions may limit local flexibility in implementing guidance.

Proportionality

Disaster policies may require burdensome recommendations, including social distancing, school closures, or quarantine. These burdens should be commensurate with the scale of the disaster and offer clear benefits in proportion to the burden.

Accountability

Effective disaster planning requires that individuals at all levels of the health care system (public and private sectors) accept and act upon appropriate responsibilities. Government entities are accountable to their communities for planning and implementing policies related to disasters, as outlined in this report. Accountability before, during, and after a disaster is key to building trust.

The Need to Make Difficult Choices

A major objective of public health preparedness is to build surge capacity so adequate medical care can be maintained even when numbers of patients rapidly increase and access to outside resources may not exist. Nonetheless, a disaster may force a community, at least temporarily, to confront the question of how to allocate medical resources that are insufficient for all those in need. Many different allocation systems may be proposed. Any ethically acceptable allocation system should adhere to the principles detailed above, including, most important, the principle of fairness. Generally, an allocation system will be more likely to pass the test of fairness if it reflects the additional principles of transparency, consistency, proportionality, and accountability. The ethics framework’s greatest potential for impact is during the development of CSC plans. Personnel with the responsibility for ensuring that CSC plans incorporate such ethical principles benefit the process best when they themselves are well versed in the specific issues affecting and affected by CSC plans and their implementation. It is also important to recognize how those issues expand upon and differ from ethical issues associated with routine medical practice. To ensure that the issues entailed in the process are resolved in a way that reflects community values, the committee recommends that the public be engaged in a dialog to help establish the standards that will be applied (see Chapter 9).

Any resource allocation system will reflect underlying values regarding who should receive limited resources, irrespective of whether the plan is simple or complex. For instance, plans that attempt to assess survival by using such tools as the Sequential Organ Failure Assessment (SOFA) score reflect particular value choices, in this case that resources are best used for those likely to survive rather than for those who will not survive despite access to treatment. This particular ethical choice reflects a desire to save the most lives by using resources prudently. Although saving the most lives is a widely accepted goal, it is a value-based choice, and not all may accept it. Others may wish to give priority to the young and thus not necessarily save the most lives, but the greatest number of years of life. In a discussion of values, health care providers, public health officials, and others may have strong views about what groups to privilege or what principles to uphold. Professionals have special training that helps them determine how best to achieve certain goals. However, their expertise regarding values is no greater than that of community members. This equality in expertise regarding values is why community engagement is so crucial. Professionals cannot use medical resources to support the goals and values of the community unless they know what those goals and values are.

Some ethicists have argued that no fair allocation system can be devised other than a random lottery (Peterson, 2008). However, such a system would fail to adhere to the principle of stewardship of resources. Use of a lottery with no reference to prognostic factors in the allocation of scarce medical resources would result in excess mortality since some patients would receive treatment despite having a high probability of mortality with or without treatment, while others who might have survived would die without it. For specific cohorts for whom differences in morbidity and mortality are particularly difficult to predict and no validated scoring system exists, as is the case with critically ill children, some authors believe use of a lottery may be justified (Pediatric Emergency Mass Critical Care Task Force, 2012).

Age as a Factor in Allocating Scarce Medical Resources

The question of whether age is an appropriate factor in determining access to scarce health care resources arises repeatedly in allocation discussions. For instance, the United Network for Organ Sharing sets policy for the allocation of solid organs for transplant. Recently proposed revisions for the allocation of kidneys to adults include changes that take age into account by assessing how long a potential recipient will likely survive with the donated kidney (Organ Procurement and Transplantation Network, 2011). In this context, as in others, consideration of age in allocating scarce resources has been controversial (Hippen et al., 2011).

Critical care physicians have expressed discomfort with using age as a prognostic indicator, as there is substantial physiological variability among elders of similar chronologic age. Age-related changes to organ function may, of course, be reflected in the SOFA score or other variables used by the triage team, even when age is not an overt criterion for allocation. Critical care physicians surveyed expressed a reluctance to triage specifically based on age until age 85 (Society of Critical Care Medicine Ethics Committee, 1994). Yet using age-based allocation only for those older than 85 severely limits the utility of the variable, as only 1.2 percent of the U.S. population falls into this range (Census Scope, 2011). Nonetheless, a Canadian workgroup developed guidance for the allocation of scarce resources in an influenza pandemic and listed age above 85 as an exclusion criterion (Christian et al., 2006). Others have incorporated age into their triage criteria, arguing that younger patients deserve an opportunity for a full life (Persad et al., 2009; Williams, 1997). Community engagement discussions in Minnesota and Seattle supported this general concept, although there was no consensus on age ranges or differences in age, or on how important age should be in the allocation process (Garrett et al., 2011; Public Health-Seattle and King County, 2009). While not specifically focused on age, a community engagement project in Massachusetts produced contrasting results: both consumers and health care providers objected to an allocation process that offered critical care resources only to those with an expected life span of more than 6 months (Levin et al., 2009). Additionally, participants in the community engagement discussions of a severe pandemic in Harris County, Texas, felt that using age alone as a factor in decisions about allocating critical resources was unacceptable; when age was shown to play a role in vulnerability to the disease, however, it was deemed a viable consideration (Shah, 2012). Finally, it is important to note that not all cultural groups value the young; some groups prize their elders and would not agree with giving younger patients priority.

There is no easy answer to the question of age as a triage criterion. Some participants in the disaster planning process see significant relevance in the “fair innings” argument, while others do not. However, all agree that decisions around age should incorporate community values. In particular, community engagement processes should address the following questions:

  • How important is age? For example, should age be a criterion in itself, or only when two patients who are otherwise similar in terms of medical prognosis both require a scarce resource?
  • What age ranges/differences should be considered? Should age be considered across the life span, or is there a ceiling above which advanced age should limit care options?
  • How does this community weigh age in relation to other factors, such as prognosis or a critical work role (e.g., as a first responder)?

The Role of Families in Supplementing Scarce Health Care Resources

Families provide substantial amounts of medical care to injured and ill loved ones every day across the country. The role of family in protecting at-risk members of the population is of more, not less, importance in the setting of a disaster. Tragically, family advocacy can mean the difference between life and death. In the aftermath of Hurricane Katrina, some families in New Orleans were able to overcome a policy forbidding evacuation of patients with do-not-resuscitate orders, while patients who lacked successful advocates stayed and perished (Fink, 2009).

The question of whether families can appropriately supplement medical care in a disaster arises in a number of contexts. Family members may accompany ill relatives into the acute care setting. Indeed, many facilities will likely ask family members to serve as volunteers for nontechnical tasks, such as delivering food trays to acute care patients, to free trained personnel for more complex tasks. Facilities should be mindful, however, of whether family efforts benefit all patients or only the family member. For instance, a family member performing general assistance and custodial chores helps all patients and staff; in contrast, seeking out and harassing overtaxed staff to supply a higher level of care for a loved one than is available to other patients may benefit a single individual while disadvantaging many others. The possibility of threats to staff from family members may increase if and when resources become truly scarce. Facilities will need to consider plans for limiting family access to critical care settings in those circumstances.

The lack of family can be as life-threatening a scarcity as the lack of access to medical resources, and there is no public consensus on how to address the various consequences of social isolation. This problem arises with the question of using bag-valve ventilation as a supplement when critical care resources are in short supply. Those with family members may have willing volunteers to provide manual ventilation, while at-risk members of the community, including many elderly patients, may not have such volunteers. Among the options is to require those who are willing to provide manual ventilation to enter a lottery so they will not know to whom they will be assigned. This approach would allow those connected to large volunteer groups, such as through their church or family, to share their resources with those who are isolated. Depending on the nature of the disaster, other facilities may choose not to permit or encourage manual ventilation, citing its likely lack of efficacy or the exceptionally large use of labor, a scarce resource, needed to support a small number of patients in this fashion.

Summary

CSC permit clinicians to allocate scarce resources so as to provide necessary and available treatments to patients most likely to benefit. CSC do not permit clinicians to simply ignore professional norms and act without ethical standards or accountability. CSC justify limiting access to scarce treatments, but neither the law nor ethics support the intentional hastening of death, even in a crisis.

PALLIATIVE CARE

The nation may at any time be confronted with a disaster that can threaten its way of life or how Americans perceive it as a resource-rich, humane country. In the event of a mass casualty incident, such as pandemic influenza or the detonation of an improvised nuclear device, resources for the delivery of health care may be depleted, and resupply may be either slow or nonexistent. One problem that can be anticipated in a catastrophic disaster situation is having more people who require care than available resources to provide that care.

Despite a resource-poor situation, the obligation remains to provide people with care, comfort, and symptom management throughout a disaster. Although a relatively new component of disaster planning, the principle of palliative care (with specific regard to supportive care at the end of life) should include a holistic and humane approach to public health and health care services during such an incident, and should be considered in the development of community plans for disaster response. The provision of palliative care in the context of a disaster with scarce resources can be considered a moral imperative of a humane society.

The Imperative to Provide Palliative Care

Palliative care is a specialty that focuses on relief of pain and other symptoms of serious illness, with the goal of preventing and easing suffering and distress while offering patients and their families the best possible quality of life. Palliative care is appropriate at any stage of a serious or life-threatening illness and is not dependent on prognosis. It can also be provided at the same time as curative and life-prolonging treatment. The provision of palliative care improves health care quality in three key areas:

  • relief of pain and other symptoms and emotional suffering for patients and families;
  • enhanced communication and decision making among patients, health care practitioners, and families; and
  • improved coordination of care across multiple health care settings.

In its 2009 letter report, the committee stated that palliative care should be available to all people affected by a disaster (IOM, 2009). The key services include comfort, compassion, and maintenance of dignity—services that can be provided with essentially no physical resources other than the presence of another human being.

The public would likely benefit from understanding that palliative care, in ordinary times or during a disaster, prevents a sense that society or its health care professionals have abandoned the patient or deliberately caused death. Instead, palliative care respects the humanity of those who will die soon, minimizes their discomfort, supports their loved ones, and provides aggressive treatment of symptoms (e.g., pain, shortness of breath) (Domres et al., 2003; Matzo et al., 2009).

Ethical considerations and principles associated with scarce resources and CSC should be incorporated into CSC planning. As noted earlier, public health disasters justify temporarily adjusting practice standards and/or shifting the balance of ethical concerns from a focus on the needs of individuals to a focus on the needs of the community (Orr, 2003). Yet while the primary goal of a coordinated response to a disaster should be to maximize the number of lives saved, a practical plan also should provide the greatest comfort for those who will live for a while before dying as a result of the incident (Holt, 2008). Palliative care can play an important role in mass casualty incidents when resources are scarce. Special attention should be given to the planning and resources necessary to maximize care for patients with serious, advanced illness prior to a disaster, as well for those facing the end of life as a result of the disaster.

Resiliency in the face of a disaster requires a fully integrated and coordinated strategy to address how services will work together. All sectors of the health care system will be called upon to respond and save lives, or when that is not possible, to ensure a comfortable death. Advanced illness and end-of-life care pose particular challenges during health emergences, given complex care needs and the often competing demands for health care practitioners, supplies, and space. Palliative care surge capacity will be needed across settings. This need brings many challenges, including educating professional staff unfamiliar with delivering palliative care, stockpiling and providing necessary medications for effective symptom management at the end of life, and establishing protocols for symptom management for at-risk populations. Meeting these challenges will require training nonprofessional caregivers in basic comfort measures and ensuring broad-based coordination among EMS, hospitals, hospice and palliative care professional organizations, home care agencies, long-term care facilities, and state and local public health authorities. The emerging role of health care coalitions will also be instrumental in the successful integration of palliative care planning and implementation into regional protocols for disaster response.

What should first responders, disaster personnel, and health care providers do when all in their care cannot reasonably survive given the scope of injuries, the magnitude of exposure, environmental conditions, and pre-existing medical conditions? At a minimum, disaster response palliative care services should include relief of severe symptoms and comfort as people are facing death. There will be a sizable number of people for whom death can be expected, although they may live for hours, days, or weeks. Those who are not expected to survive cannot simply be consigned to holding areas while still alive, nor should they and their family advocates overwhelm hospitals and EMS systems that could be addressing the needs of potential survivors (Matzo et al., 2009).

Those who are dying or near death as a result of or during a disaster can be cared for humanely if plans and protocols for such care are established in advance of the incident. When all people cannot reasonably be saved because of the immediacy and scope of mass injuries and in the face of suddenly scarce resources, choices should be made as to who will most likely benefit from life-saving treatment (i.e., survive in the short as well as long term). The ethical assessment of benefit, burden, and efficacy may shift in the context of a disaster. Facilities should devise plans to meet the needs of excess patients in a disaster. If, despite these planning efforts, triage policies are triggered, scarce curative treatment will likely be directed to those patients most likely to survive the short-term effects of acute injury and/or illness, although the potential for long-term survival will be equally important, taking into consideration the prognosis for pre-existing chronic underlying medical condition(s) for patients in hospital or chronic care facilities.

Identifying transition points in a person’s condition helps the patient, the family, and health care practitioners prepare for the final stage of life. A transition point can be defined as an incident in the trajectory of an illness or injury that moves the patient closer to death. For example, a patient with chronic obstructive pulmonary disease may experience no change in her condition until she contracts influenza and never fully recovers; for that patient, contracting influenza is a transition point in her condition (Berry and Matzo, 2004). Prognostication, aided by a risk index or scale, enables health care practitioners to formulate clinical strategies during a crisis situation. These tools may be helpful in determining whether a patient’s illness has reached a terminal phase (Matzo, 2004). Providing a treatment category of “palliative care” for those not likely to survive will be an important service option for responders and triage officers. Acknowledging that a person is not likely to survive typically leads to discussions regarding goals of care, appropriateness of interventions, and efforts to help the patient and family begin to say goodbye (Matzo, 2004).

The Agency for Healthcare Research and Quality (AHRQ) published a report outlining principles to guide community planning for the delivery of health care in the face of overwhelming numbers of casualties (AHRQ, 2005). The intent of this planning guide was to assist state and local planners in developing plans that would optimize their ability to provide direct care for as many people as possible while protecting the rights of individuals to the extent possible under the circumstances. To achieve this goal, plans should promote the fair and equitable use of scarce resources. These resources may include emergency department, hospital, intensive care unit, or specialty care beds; transport assets; pharmaceuticals/countermeasures; medical equipment and materiel; and personnel. As in all situations of scarce medical resources, clinicians will use available triage tools and their professional judgment in identifying those individuals whose health condition suggests they will obtain the greatest benefit from the available resources (AHRQ, 2005).

A survey of disaster planning and palliative care key informants found that few in the disaster preparedness community or the palliative care community had been involved in coordinated planning activities in which the role of palliative care in emergency response was recognized (Matzo et al., 2009). Key informant discussions and an expert panel dialogue highlighted the importance of palliative care (e.g., aggressive symptom management) in a holistic and humane community disaster planning and response capability (Matzo et al., 2009). These discussions led to several recommendations: that specific roles and responsibilities and incident-driven resource requirements in all settings (e.g., the location of an incident, acute care hospitals, nursing homes and other alternate care sites, home) should be identified, defined, and provided; that palliative care services should be fully incorporated into all levels of state and local disaster planning/ training guidelines, protocols, and activities; and that first responder personnel and local and regional disaster response planners (e.g., EMS; fire, police, and public health departments; community health clinics; local and regional government entities) should be involved in identifying and developing clear specifications for what levels of care are to be delivered in what settings (at the incident, in alternate care sites, in existing secondary referral sites such as nursing homes or individuals’ homes) and by whom (e.g., first responders, rescue personnel, palliative care personnel, long-term care personnel). As discussed in Chapter 8, alternate care sites offer an opportunity to incorporate palliative or end-of-life care. For example, Michigan uses the Modular Emergency Medical System model and has been planning for end-of-life care consistent with the alternate care facilities planning guides (Cantrill et al., 2009).

Pain is the primary symptom in need of management in both disaster and war; “to prevent chronic pain and neuropathic pain as a result of amputation, burn injuries, delayed wound healing, malnutrition or infection, pain relief in disaster victims is of paramount importance” (Domres et al., 2003). Therefore, effective pain and symptom management should be a basic minimum in service delivery and training for palliative care during a disaster. Training for palliative care should be competency based, with programming specific to the individual’s role in emergency response. It should cover, at a minimum, the basic philosophy and goals of palliative care, basic symptom management (e.g., pain, anxiety, shortness of breath), the use and titration of oral and injectable narcotic analgesics for patients in pain and/or near death, symptom recognition in the case of pandemic influenza or a chemical or radiological attack, and basic psychosocial counseling and support. Disaster planning should take into account the potential benefits of stockpiling palliative care medications at accessible sites, including away from acute care hospitals (e.g., in nursing homes), and should include training for disaster responders in how to locate, access, and use these medications. The committee recognizes that federal, state, and local governments are already engaged in creating and maintaining pharmaceutical stockpiles, and while issues may exist with respect to stockpile management and rotation, those issues are beyond the scope of the committee’s charge and expertise.

A Triage Model

A triage model for use in palliative care includes categories not typically seen in other triage models (Cone and MacMillian, 2005; Janousek et al., 1999). Figure 4-1 presents the model of triage used for the expert Catastrophic MCE discussion cited above (Matzo et al., 2009). The term “likely to die” was defined as those people who are too sick or injured to survive hours, days, or weeks, most often categorized as the “expectant/black,” “nonsalvageable,” or “non-savable” victims. In practice, however, this category may also include those labeled “immediate” if needed medical resources are unavailable. This category could also include cases in which an individual is already dependent upon the usual health care system to survive (e.g., ventilator-dependent patients), has an existing life-threatening illness (e.g., extensive cancer), or has illness secondary to injuries sustained in the disaster (Matzo et al., 2009).

FIGURE 4-1. A triage and response model.

FIGURE 4-1

A triage and response model. NOTE: MCE = mass casualty event; PC = palliative care. SOURCE: AHRQ, 2007, p. 107.

The “likely to die” category is very broad but reflects the current state of the triage classification. Established triage schemes have substantial limitations when applied to the special circumstances of a disaster and the provision of palliative care. For example, many of the schemes do not attend to the likelihood of survival for patients with critical pre-existing medical conditions. Furthermore, there is a paucity of data addressing the critical question of whether correctly sorting casualties into the categories of any particular triage system results in improved outcomes, and one system may not handle all potential triage decisions in all triage settings (Cone and MacMillian, 2005). In practice, moreover, the “expectant” category often is applied only to those patients who are not breathing after one attempt at repositioning and opening the airway; all other critically ill or injured persons are treated as “immediate” or “delayed” (red or yellow). Finally, the usual triage schemes do not include palliative and comfort care measures as an alternative to curative treatment (Cone and MacMillian, 2005; Matzo et al., 2009).

A triage system for allocation of scarce resources will function best if it is transparent; fair; valid; consistent across settings and events; dynamic (applied at multiple places and times); and flexible enough to address changing circumstances, including responding when patients triaged as likely to die actually improve or when additional treatment resources become available (Matzo et al., 2009). Preserving a functioning health care system during and after a disaster will require the adoption of principles of field triage, limits on the use of ventilators and surgery, and the creation of alternate care sites. Research is beginning to provide a scientific underpinning for triage (Sacco et al., 2005), as well as to identify basic criteria for critical care triage during a disaster in which medical resources are scarce (Devereaux et al., 2008; Wilkinson et al., 2007). Future research will have to address the applicability of triage to palliative care, as well as the role of palliative care in disaster response. The arguments for incorporating palliative care into disaster response—humane treatment, diversion of dying people away from overburdened hospitals, more effective use of scarce resources, and the provision of care that patients want—have moral weight on their own, but research should still assess their impact.

In developing CSC plans, state and local public health agencies should work with hospice and other relevant partners to incorporate palliative care into disaster response plans. These efforts should include the development of

  • evacuation plans for those who would be likely to benefit from palliative care;
  • a community response plan, staffing plans, and training programs for first responders and other relevant medical personnel;
  • transparent, community-based, explicit triage criteria for those not likely to survive;
  • community conversations to engage, educate, and prepare the public;
  • a plan for stockpiling needed medications and supplies at hospitals and at sites located away from hospitals (Wilkinson et al., 2007); and
  • out-of-hospital considerations that may warrant moving individuals expected to die to care sites other than acute care hospitals.

In addition, palliative care professionals should participate in disaster planning, response and recovery training, and public education (Holt, 2008). First responders and health care providers at all disaster care sites (incident sites, alternate care sites, and hospitals) should have training in effective pharmacological pain and symptom management and psychosocial support. It is recognized that the burden to educate all of these personnel would be out of scope, but just-in-time training for those faced with palliative care responsibilities should be developed as part of the planning process.

Rebmann and colleagues’(2009) survey of 633 infection control professionals found that fewer than one-quarter of hospitals had convened their ethics committee to discuss preparedness issues or developed policies/procedures for CSC during a catastrophic disaster. During Hurricane Katrina, absent supplies and direction, the palliative care response was erratic and inefficient. One way to ameliorate a chaotic palliative care response is to form palliative care response teams comprising psychologists, chaplains, and health care providers with knowledge of palliative care as a core component of the emergency response process. Crosstraining of personnel in other areas to serve in this capacity is also important. As the volume of patients triaged to palliative care expands, so, too, will the strain of providing mass palliative care. Periodic emotional and psychological relief will be necessary for these palliative care providers through their rotation to other groups; this will be an important consideration for the welfare and morale of the provider corps as a whole.

Management of the dead can be one of the most difficult aspects of disaster response, and it has profound and long-lasting consequences for survivors and communities. Immediately after a catastrophic disaster, identification and disposal of human remains often are performed by local communities, primarily through local funeral directors and homes.

Summary

Facing the deaths of large numbers of its members while ensuring that those deaths are as pain and symptom free as possible is a major challenge for a community. Boxes 4-1 through 4-3 summarize key considerations in incorporating palliative care into CSC planning and implementation. Box 4-1 lists essential elements of palliative care under CSC conditions; Box 4-2 presents discussion topics for palliative care planning; and Box 4-3 details key points related to the implementation of palliative care in disaster situations.

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BOX 4-1

Essential Elements of Palliative Care Under Crisis Standards of Care Conditions. Principles of palliative care integrated into response structures/plans Rapid palliative care response team trained to provide palliative care at all service delivery sites (more...)

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BOX 4-2

Discussion Topics for Palliative Care Planning. Define common medications for community stockpile and cache locations as a potential part of the regional planning effort. Develop the skills, materials, and memorandums of understanding needed to shelter (more...)

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BOX 4-3

Implementation of Palliative Care in Disasters: Key Points for Planners. Incident Command and Operations Request the participation of local, regional, and state disaster planning leadership to form a network of leaders in home health, palliative care, (more...)

MENTAL HEALTH

The population-level impact of a disaster reflects a continuum of risk and resilience, and can include prevalence rates of mental health disorders among 30-40 percent of direct victims (Galea and Resnick, 2005). In addition, many individuals will experience transitory, subsyndromal distress that will dissipate as a result of resilience.

Comprehensive planning for the mental health and social consequences of CSC requires consideration of the full continuum of risk and resilience. The focus includes patients, their families, health care providers, and the general public. The use of CSC and the broader context in which it is required will significantly challenge the resilience of the community (and even the nation). There will also be unique opportunities to mitigate these impacts by incorporating the social and psychological aspects of disaster response into CSC planning, as proposed in the committee’s 2009 letter report (IOM, 2009).

Scope of the Issue and Range of Impact

CSC poses unique challenges for all involved in a disaster, including health care providers (and their families), patients receiving health care, and the public.

Although health care providers may confront life-and-death decisions on a daily basis and routinely experience the loss of patients, CSC differs from these experiences both quantitatively and qualitatively. For example, as soon as care shifts from a focus on the needs of individual patients to a focus on the greatest good for the most people, the entire health care team may have very different experiences with life-and-death decisions. If a disaster results in mass casualties, a significant threat to the mental health of the health care workforce may result. If not sufficiently addressed, these foreseeable mental health consequences may further degrade the functionality of the health care system and its ability to implement CSC optimally. Health care workers may bear the double burden of stress due to their professional roles and that due to seeing their families and friends requiring care within the CSC context. In some public health emergencies, moreover (such as the epidemic of severe acute respiratory syndrome [SARS]), health care workers themselves are subject to elevated health and mental health risks (Hawryluck et al., 2004; Lin et al., 2007).

Patients and families also will face significant psychosocial impact. The idea that CSC treatment decisions are based on the most good for the most people may run counter to their previous experiences, expectations, and wishes. If patients encounter CSC decisions that involve life-and-death consequences for their loved ones (which also may include disproportionate numbers of children and their parents), a significant population-level mental health burden and even the potential to unravel the social fabric of communities may result. Relationships between providers and their patients and patients’ families will face unprecedented complexities as CSC decisions are communicated and implemented and their consequences unfold at the clinic or bedside. Following the anthrax attacks in 2001, for example, the complexity of evolving risk communications and perceptions of differences in care among patient groups reflected episodic confusion among local and federal public health officials, medical providers, and patients (see Gursky et al. [2003] for a review). Public health emergencies that involve both CSC and social distancing may be particularly challenging as common sources of support, and hence resilience, are reduced (Gostin, 2006).

When these issues evolve on a regional or national scale, the potential for the perception of inequality in the application of CSC grows, and the protective impact of the sense that “we are in this together” is diminished, posing a threat to resilience. Although prosocial behavior is by far the most commonly observed collective response after a disaster (Glass and Schoch-Spana, 2002), planning should take into account the potential for negative social behaviors that may include aspects of panic. Indeed, there is limited consensus that certain features of emergency situations can trigger panic-like phenomena. For example, following the Three Mile Island nuclear incident, for every person that was asked to evacuate, 45 actually did, creating unintended gridlock. The prospect of pandemic influenza, which could entail significant morbidity and mortality, may also generate some undesirable collective behaviors among those attempting to avoid contagion, such as obtaining nonrecommended antiviral prophylaxis. Following the recent nuclear meltdown in Japan, for example, sales of potassium iodide, a treatment that prevents uptake of radioactive iodine by the thyroid gland, skyrocketed. Worldwide availability of potassium iodide ceased altogether for a period of time despite the quadrupling of prices (Aleccia, 2011). Factors that may be tied to the potential for mass panic in the CSC context include

  • a belief that there is a small chance of escape from the agent,
  • perceived high risk,
  • available but limited treatment resources,
  • no perceived effective response, and
  • loss of credibility of authorities (DeMartino, 2001).

A high-mortality incident entailing CSC may have sufficient triggers to ignite panic behavior in some individuals and subpopulations. These risks occur against a backdrop of the recent finding that only 35 percent “of the American public is confident in the health care system’s readiness to respond effectively to a deadly flu pandemic” (National Center for Disaster Preparedness, 2005, p. 1). For example, among respondents to the Los Angeles County Health Survey, which included questions regarding terrorism preparedness, 17 percent reported having developed an emergency plan and 28 percent maintaining additional supplies of food, water, and clothing (Eisenman et al., 2006).

The full range of these impacts at the public level needs to be considered more fully. Traditional risk communications that focus on content are necessary but not sufficient to facilitate resilience and manage the emotional fallout that public health emergencies can engender. Engagement of the public (and health care providers) is essential to maintaining individual and community resilience (see Chapter 9). In fact, it should be regarded as a fundamental component of preparedness such that it is incorporated throughout the stages of response in a public health emergency that requires CSC.

Finally, there is a largely uncharted opportunity to leverage social media to facilitate national resilience in the face of a disaster. These media could be used to convey the notion that, despite challenges and traumatic outcomes for some, “we are in this together,” and to clarify the use of a common CSC approach governed by the ethical principles outlined in this report.

Patients with Psychiatric Emergencies as a Particular Crisis Standards of Care Subpopulation

In many communities across the United States, the allocation of scarce resource is already necessary to address chronic shortages of inpatient mental health beds for adults and children (Geller and Biebel, 2006; SAMHSA, 2007). In some communities, patients presenting to the emergency department with life-threatening mental health conditions are never transferred to an appropriate level of care or must wait days in the emergency department environment before receiving definitive psychiatric care (Schumacher Group, 2010). In some disaster scenarios, demand on these resources may be even greater, magnifying the need to develop CSC specific to psychiatric emergencies that entail immediate danger to those gravely disabled by their psychiatric illness or others. The development of CSC specific to the management of highly limited involuntary psychiatric resources will also be necessary. Strategies will need to consider cases in which psychiatric patients with comorbid medical conditions require care under CSC (see the HHS [2012] definition of at risk).

Operational Guidance to Enhance Resilience and Manage the Mental Health Consequences of Crisis Standards of Care

The 2009 letter report offered specific strategies and described several national best-practice initiatives with respect to managing the mental health consequences of mass casualty events (IOM, 2009). Here the committee offers more detailed operational guidance tailored to patients, providers, and the general public. At the various levels of hospital facility, local/regional, and state planning, the following elements are necessary to address the continuum of resilience and mental health issues tied to CSC (see also Box 4-4):

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BOX 4-4

Functions for Mental Health Response to Crisis Standards of Care. Suggested: Concept of mental health operations in CSC integrated into incident command system and other response structures and plans Specific capabilities and capacities required for patients/families, (more...)

  • A disaster mental health concept of operations and operational disaster mental health plan should be developed.
    ο

    These plans may guide the disaster mental health response in an all-hazards context but include incidents that trigger CSC (and surge demand) for mental health resources.

    ο

    The plans should address the full continuum of those affected, from those with pre-existing mental illness, to those directly affected by the implementation of CSC and their families, to health care workers who must implement CSC, to the general public.

  • Plans should address the anticipated consequences of CSC incidents through a gap analysis of the range of expected mental health impacts versus current resources. When informed by such an analysis, triage decisions reflect a rational allocation of limited disaster mental health resources. During response, near-real-time awareness of needs and resources informs a floating triage algorithm of risk levels versus resources, guided by the ethical framework set forth in this report.
  • Evidence-based interventions should be identified for the high-risk subset of providers; patients; and surviving family members, including children (e.g., trauma-focused cognitive-behavioral therapy for children, prolonged-exposure cognitive-behavioral therapy for adults, and other commonly employed techniques [IOM, 2007; Stokes and Jones, 1995]).
  • Core competencies and training curricula should be developed for
    ο

    mental health, social services, and spiritual care staff;

    ο

    health care providers; and

    ο

    the public—basic strategies for community resilience that community members can use with friends and family (such as very basic psychological first aid, created specifically for these populations) (see also Chapter 9 on public engagement).

  • Site, local/regional, and state-level incident command operations should be augmented to integrate mental health operations into emergency operations center operations. These efforts should encompass mental health needs assessment and operations for patients/disaster victims and responders (including health care workers and their families) to create user-defined situational awareness of acute mental health gaps, including
    ο

    a user-defined/common operating picture of the continuum of population-level mental health risks (traumatic loss, multiple traumatic losses);

    ο

    a user-defined/common operating picture of the continuum of mental health risks to health care workers; and

    ο

    a user-defined/common operating picture of mental health resources, including telephone, triage, and novel Internet-based interventions.

  • Comprehensive resilience programs for health care workers/responders should be developed that integrate personal behavioral coping and agency preparedness. These programs should encompass preincident stress inoculation, development of personal resilience “plans,” simple peer-to-peer psychological first aid, self-triage, and linkage to Internet-based interventions for those at higher risk who desire further support.

For Patients and Their Families

In a mass casualty event involving high rates of illness, injury, and mortality, disaster mental health resources, like health care resources generally, are likely to experience significant surge demand. Although there may be considerable individual and community resilience, many others will be at risk for developing new-incidence comorbid disorders, such as posttraumatic stress disorder, depression, and substance abuse. Others with preexisting mental health disorders, including those that are severe and persistent, may experience relapse or worsening of illness episodes (NBSB, 2008). The phenomenon known as “traumatic grief” can result when the death of a loved one occurs in a particularly traumatic context; CSC may be such a context for many and thus could lead to widespread traumatic grief (NCTSN, 2004). When adults or children develop symptoms of traumatic grief, they require specialized interventions, such as trauma-focused cognitive-behavioral therapy for children and prolonged-exposure cognitive-behavioral therapy for adults (IOM, 2007). While resilience is common after the loss of loved ones, rates of resilience may drop by as much as 50 percent when traumatic grief is present (Norris, 2005; Shear et al., 2005). Therefore, the capacity to provide evidence-based care for traumatic loss is a key requirement under CSC.

There is also growing evidence that certain evidence-based interventions, when provided early after a traumatic incident, may significantly reduce long-term mental health consequences (Bisson, 2008; Roberts et al., 2010; Shalev et al., 2012). However, early rapid triage is needed to allocate these resources to those at risk (Schreiber, 2005; Schreiber et al., in press). The ability to provide a continuum of evidence-based care, based on triage risk, is a hallmark of community resilience planning. Both specific coping information on traumatic grief (NCTSN, 2004) and additional coping information specific to expected reactions to CSC need to be developed. Potential risk factors include experiencing traumatic loss (including missing family members); seeing many dead or injured or hearing cries of pain; being trapped or unable to evacuate; and experiencing persistent stressors, such as ongoing injury or illness due to a disaster, home loss, and disasterinduced relocation.

Therefore, strategies employed at the population level should utilize evidence-based rapid triage to help identify those at greatest risk for more sustained and serious consequences and allocate limited mental health resources to those at the highest level of evidence-based risk for sustained disorder and impairment. One example is the PsySTART disaster mental health rapid triage system, currently used by the American Red Cross and the Minnesota Department of Health, and available to 83 Los Angeles–area hospitals and community clinic agencies in the Los Angeles County Emergency Medical Services Agency Hospital Preparedness Program. Although there are certainly challenges to implementing such strategies, the ability to align and allocate limited mental health resources is necessary to address the needs of those at higher risk for acute psychiatric emergencies and enduring psychological consequences. The Los Angeles EMS agency has operationalized this model in proposed modifications to the hospital incident command system and evaluated its use in a recent statewide disaster medical exercise, which revealed acceptable levels of mental health triage accuracy in a simulated countywide mass casualty incident (Schreiber et al., 2011). There are certainly daily challenges in accessing care for psychiatric emergencies. Within the CSC/disaster context, however, there are unique opportunities to advance surge management of risk and to improve population-level resilience by employing the combination of rapid disaster mental health triage (using a shifting or “floating” triage algorithm of dynamic alignment of resources with highest risk); “stepped” care case management (Zatzick et al., 2011), which involves maximizing population-level mental health impact or reach through timely triage-informed allocation of high-intensity treatment resources and increasing service intensity only after lower-intensity efforts are found insufficient; and evidence-based, nternet-based interventions (Ruggiero et al., 2011), which address surge demands and stigma through targeted modules for depression, posttraumatic stress, substance abuse, and anxiety.

For Health Care Providers

As noted above, responders and health care workers typically exhibit high levels of resilience following a disaster response. When CSC must be utilized, however, this may not be the case. A number of features of CSC—the potential for dramatically high mortality rates, including pediatric deaths; the stress of implementing and communicating about CSC with individual patients, their families, and others—pose severe mental health threats to health care workers. Available research suggests that many or most health care workers expect to face major barriers to their ability and/or willingness to perform hypothetical emergency health care roles (Chaffe, 2009; DiGiovanni et al., 2003; DiMaggio et al., 2005). In this regard, strategies needed for providers mirror those needed for patients—the use of rapid triage to identify those at highest risk and those with other concerns, and to align limited disaster mental health resources rationally and ethically to providers with the greatest needs.

A number of localities have developed pilot efforts to enhance resilience in disasters. Los Angeles County, one of several examples, has initiated a provider resilience project, called Anticipate, Plan and Deter, that leverages stress inoculation in the preparedness phase, including aspects of CSC, and self-triage/ monitoring in the response phase for the creation of a “personal resilience plan” for the health care workforce (Schreiber and Shields, 2011; Schreiber et al., in press).

Psychological first aid is another approach that can be used by mental health workers, health care providers, and patients and their families, as well as the general public. Currently, there are a number of different models for psychological first aid: one that is among the most comprehensive and intended for use by trained mental health care providers (NCTSN, 2006); another that is intended for use by community disaster responders with no mental health background (American Red Cross, 2006); and yet another, called Listen, Protect and Connect, designed specifically for the provision of basic psychological first aid and psychosocial support by all members of the community (Gurwitch and Schreiber, 2010). Listen, Protect, and Connect is a method for enhancing social support using three simple principles at the family, neighborhood, and community levels. It is intended as an achievable community resilience capability to strengthen social ties at the most basic levels of social connection. So-called “Mhealth” versions and provider versions for CSC are currently in development as part of the Los Angeles County Community Disaster Resilience Project. Aimed at the general community, Listen, Protect, and Connect has versions for children and parents and for teachers, as well as a “neighbor-to-neighbor, family-to-family” all-ages version. These versions were recently adapted for the Los Angeles County Department of Public Health and its community disaster preparedness partners, including the medical reserve corps, community health clinics, hospitals, public health workers, schools, and first responders.1

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Footnotes

1

These versions are available without cost from http://www​.cdms.uci.edu/protect.pdf.

Copyright 2012 by the National Academy of Sciences. All rights reserved.
Bookshelf ID: NBK201082

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