By Anne M. Wilkinson, Ph.D., M.S., Co-lead Author,a Marianne Matzo, Ph.D., APRN, BC, FAAN, Co-lead Author,b Maria Gatto, M.A., APRN,c Joanne Lynn, M.D., M.A., M.S.d
a Senior Social Scientist, Palliative Care Policy Center, RAND Corporation
b Professor Palliative Care, University of Oklahoma College of Nursing
c Director of Palliative Care, Bon Secours Health System
d Senior Natural Scientist,
RAND Corporation
This chapter addresses the overarching mass casualty planning issue of how to provide optimal support for the dying, those facing life-limiting illness or injury, and those caring for them. It defines palliative care and explores ways in which this care can be integrated into initial planning and response (including health care facilities and alternative care sites) for catastrophic events. The goal of this section is to offer recommendations and considerations to help community planners address palliative care in areas such as decisionmaking, communication, supplies, resources, training, and personnel. |
Palliative Care in the Context of a Mass Casualty Event (MCE): Issues and Recommendations at a GlanceMajor Palliative Care-related Challenges The provision of palliative care in the context of an MCE is a new component of disaster planning; there is a lack of understanding of how to incorporate community-based health care, mental health and social service professionals into planning efforts. Recommendations for Planners Leadership:
Incorporating Palliative Care into MCE Planning
Training:
Triage and Treatment Decisions:
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As was demonstrated with Hurricane Katrina, a catastrophic MCE overwhelms all available personnel and resources, both locally and regionally. Other large disasters (e.g., major hurricanes, "dirty bombs," pandemic influenza) also have the potential to overload the health care and social service systems and disrupt existing services to persons who were already seriously ill. Under conditions of massive injury and loss, and even in the face of overwhelming economic and social disruption, human beings will be called on to act humanely. In any disaster, the first priority will be to save all those who can be saved and to reestablish societal structure. In the event of a catastrophic MCE, it must be assumed that some people may survive the onset of the disaster but will have incurred such serious illness or injury that they will live only for a relatively short time. In addition, there will be vulnerable individuals (e.g., the elderly in the community, those sick in the hospital, those in nursing homes or group homes, the disabled, children) who were already ill with severe preexisting conditions and who may be negatively impacted by the resulting scarcity of resources. These individuals will suffer harm disproportionately during or following a catastrophic MCE, because they may not be able to seek help, care for themselves, or pursue other survival and recovery strategies pursued by nonvulnerable populations.
"When the needs of the many outweigh the needs of the one, what happens to the one?" —Sally Phillips, R.N., Ph.D., Agency for Healthcare Research and Quality |
The goal of an organized and coordinated response to a catastrophic MCE should be to maximize the number of lives saved. At the same time, the goal also should be to provide the greatest comfort and minimize the physical and psychological suffering of those whose lives may be shortened as a result of either an immediate surge of patients or long-term exposure following a catastrophic event.
Under ordinary circumstances, about 1 to 2 percent of the population lives at home or in long-term care facilities with serious illness, facing the last phase of life.
Most scenarios of catastrophic MCEs would create sudden large numbers of fatally injured or critically ill short-term survivors that are at least a few orders of magnitude larger than the existing vulnerable populations. Depending on the event, some victims will last only a few weeks (e.g., pulmonary injury from airborne chemicals) and some may last for months (e.g., pandemic influenza). In many cases, those who survive the onset usually will live for some time—days to months—but will not be "expected to survive" due to the event itself or to the ensuring resource scarcities it creates. Initial identification of those who might fit into the "not expected to survive" category following a catastrophic MCE may include:
Those who are not expected to survive cannot be simply abandoned or ignored; nor should they overwhelm hospitals and EMS. By including these populations in existing disaster and MCE preparation, response, and management, most communities can ensure humane palliative care for all affected by such disasters.
Aggressive management of symptoms and relief of suffering is what generally have come to be called "palliative care." The World Health Organization defines palliative care as "an approach which improves the quality of life of patients and their families facing life-threatening illness, through the prevention, assessment, and treatment of pain and other physical, psychosocial, and spiritual problems."
While it is important to understand what alliative care is, it is also important to specify what palliative care is not. Palliative care is not abandonment of the patient or reduction or elimination of treatment. Rather, it involves active treatment for symptom management and support to address the comfort of the patients and their families. Finally, the aggressive and appropriate treatment of pain and other symptoms is not euthanasia; nor does it "hasten death" (Go to Table 7.1). The application of palliative care principles in an MCE would include:
The National Consensus Project for Quality Palliative Care states that palliative care focuses on the relief of suffering and distress for people facing serious, life-limiting illness to help them and their families to have the best possible quality of life, regardless of the stage of the disease or the need for other therapies. Palliative care is both a philosophy of care and an organized, highly structured system for delivering care. Palliative care expands traditional disease-model medical treatments to include the goals of enhancing quality of life for patient and family, optimizing function, helping with decisionmaking, and providing opportunities for personal growth. As such, it can be delivered concurrently with life-prolonging care or as the main focus of care. |
In an MCE, standards of care will require adaptation, unfamiliar personnel will be providing services, supplies will be strained, and command and control lines of authority will need to be established. In the interest of maximizing good outcomes for as many patients as possible, and at the very least, providing palliative care to all, treatment decisions will have to balance utilitarian notions against other ethical values, with medical effectiveness as a key determinant. Priority access to scarce resources, including structural and skilled personnel resources, may be applied or moved to those with the greatest potential for survival. Thus, services to those expected to die soon will fall more heavily on people who do not have substantial prior health experience and expertise.
"The needs of those who may not survive catastrophic mass casualty events and the 'existing' vulnerable populations affected by the event should be incorporated into the planning, preparation, response, and recovery management systems of all regions and jurisdictions." —Joint Commission on Accreditation of Healthcare Organizations, 2004 |
The need to care for the dying in times of calamity has been a small part of military medicine for a long time: chaplains and morphine are standard issue in field operations. In addition, the need to care for the dying in routine civilian medical care has come to the fore with the advent of large numbers of people who live with serious chronic illness and increasing disability for a substantial time before dying. Optimal support of potential survivors, the dying, and those whose vulnerability or frailty will be exacerbated by the event itself depends, in part, on having done a good job in planning for the inevitability of mass casualties throughout the time of the disaster. Crafting services that enable comfort, support longevity, and permit meaningful activities and relationships has been a major commitment of modern health care and consolidated under the label "palliative and supportive care."
Community planners face several significant challenges in the integration of palliative care services and personnel into MCE response planning. First, the provision of palliative care in the context of an MCE is a new component of disaster planning. As such, there is a dearth of literature and expertise on the subject of palliative care in the context of an MCE. Second, palliative care, long-term care, and home care are already resource poor; thus, identifying and securing funding for palliative care services will be a significant challenge. Third, there is a lack of understanding of the potential utility of incorporating community-based health care, mental health, and social service professionals into MCE response planning efforts—even by the professionals themselves. Finally, there is a significant lack of public awareness regarding the limitations of the health care system under austere circumstances.
The palliative care service aspect of community preparedness is new to disaster planning in the United States. Without deliberate planning and direction, stocking up on appropriate supplies, and the development of realistic guidelines, supportive care services for the dying in MCEs will be erratic, inefficient, disruptive, and potentially indefensible as the basis for social reorganization after the disaster.
In most disaster scenarios, the priority concern is for survivors. In situations of the scale of the Oklahoma City or World Trade Center bombings, the local health and social service systems were able to respond to the relatively small numbers of seriously injured and modest disruptions to supportive care and community services for the existing population. In recent catastrophic events such as Hurricane Katrina, however, there were massive disruptions to local and regional response capabilities, and large numbers of critically ill survivors with few resources to respond to them.
Knowledgeable professionals and organizations (e.g., geriatricians, palliative care clinicians, long-term care providers and organizations, home health providers, hospice providers) should be integrated into current local, State, and regional disaster preparedness planning to bring the palliative care perspective.
Recommended actions include:
As noted earlier, the barriers to implementing these recommendations involve the fact that palliative care, long-term care, and home care are already resource poor; there is a lack of understanding of the potential utility of incorporating community-based health care, mental health, and social service professionals into planning, even by the professionals themselves; and there is a dearth of literature and expertise on the subject.
The role of palliative care and the resources needed to incorporate it into disaster response must be anticipated and fully incorporated into the current State and local disaster planning/training guidelines, protocols, and activities.
Recommended actions include:
The barriers to integrating palliative care services into MCE planning and response include substantial differences of perspective between palliative care providers and other planners; for example, there may be differences in perceptions between providing comfort and dignity and enhancing survival, even though these are often intertwined.
A model of triage and response for victims of an MCE and the potential impacts on the prevailing health and social service system is depicted in Figure 7.1.
Casualties would fall under three general categories: those unscathed by the event or too well to require emergency medical treatment, those too sick or injured to survive days or weeks, and those deemed appropriate for acute medical treatment and transport to an acute medical care facility. In addition, the existing "vulnerable" population likely will be affected by the event or the resulting disruption to their support system and may become palliative care patients due to the scarcity of resources. These patients also would be triaged over time to one or more of the casualty categories and casualty treatment sites, as their condition either worsens or improves.
In the event of a catastrophic MCE, casualties will be triaged at the site of the incident and again after transport to an ACS. Some will be deemed "likely to die" during the extreme circumstances of the catastrophe and therefore will be triaged not to receive (or not to continue to receive) life-supporting treatment. For these casualties, death will be expected within a short period.
This reality poses substantial challenges for all involved, including the recognition that some people who might survive under other circumstances now will die. Given the usual focus of rescue in manageable disaster events, most patients, families, and emergency responders are likely to resist this designation and attempt to save all, potentially exacerbating an already overwhelmed medical care system. Thus, ACS and providers need to be identified and used for this population during catastrophic MCEs.
Recommended actions include:
Barriers include public resistance to the overt rationing of health care resources. It is the role of the popular media and public health agencies to enhance public understanding regarding the limitations of the health care system under dire circumstances.
Supply arrangements must be identified as part of the community planning effort not only to ensure that all potential palliative care supply sources are included, but to prevent multiple organizations from unknowingly relying on the same suppliers. Resources include people, equipment, food, and medical supplies. Mutual aid agreements should be made ahead of time with community agencies, other health care providers, and backup suppliers to ensure that resource needs for palliative care service delivery can be met.
Recommended actions include:
Barriers will include the need to stock supplies near the settings of service and preferably distant from hospitals and other sites of definitive care for survival. Long-term care facilities, inpatient hospice settings, or home nursing care offices are possibilities. Having controlled substances in strong lockboxes is probably most naturally sited at nursing homes, where systems are in place and storage of these drugs is already set up. Another option would be designated pharmacies. The effectiveness of these two options obviously would depend on their proximity to the disaster scene.
Training in palliative care must occur prior to an MCE and will involve many layers of education and practice. Planners can incorporate experts now working with seriously chronically ill persons to be mobilized to serve those who might live and who are seriously ill. Thus, many of the physicians, nurses, and therapists who regularly serve the disabled or elderly will be needed to provide life-extending treatments. Planners could designate in advance certain leadership to remain in place and mobilize retired professionals and layperson volunteers.
Communities now provide Community Emergency Response Team training to engage citizens in community and family preparedness through public education, outreach, and training. Building on existing models of emergency response training, the planning team should identify a variety of training methodologies to incorporate palliative care services training for all disaster response members.
Cross-training of personnel from other areas (of expertise as well as from other areas of the country to provide "mutual aid" to the stressed community/region) will be important. In addition, laypeople should be recruited to serve (e.g., bus drivers, mail deliverers, anyone from the community who is willing to attend the training) due to the inevitable surge in demand for assistance that an MCE will engender. Moreover, education and training should be competency based, with programming specific to the individual's role in emergency response.
Recommended actions include the following: