Public Health Emergency Preparedness
This resource was part of AHRQ's Public Health Emergency Preparedness (PHEP) program, which was discontinued on June 30, 2011, in a realignment of Federal efforts.
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7. Palliative Care
What is palliative care?
How should palliative care be managed during a mass casualty event (MCE)?
What steps can planners take to recruit and train palliative care providers in advance of a mass casualty event?
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." Those who may not be expected to survive following a catastrophic MCE may include:
- Those who are expected to die over the course of weeks (e.g., those with radiation exposure).
- The already existing palliative care population (e.g., those already enrolled in hospice or receiving palliative care in acute care settings).
- Vulnerable patients (e.g., patients with advanced illness in long-term care facilities) whose situation will be worsened due to scarcities associated with the event.
- Patients who are triaged as a result of scarce resources.
While it is important to understand what palliative care is, it is also important to specify what it 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. The aggressive and appropriate treatment of pain and other symptoms is not euthanasia, nor does it hasten death. The application of palliative care principles in an MCE would include:
- Recognizing that initial prognostication may change if additional resources become available or if the situation deteriorates.
- Honoring the humanity of the dying and those who serve them (whether loved ones, professionals, or strangers) by providing comfort and social, psychological, and spiritual support.
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Making Triage and Treatment Decisions
In the interest of maximizing good outcomes for as many patients as possible and, at the very least, providing palliative care to all who need it, treatment decisions will have to balance utilitarian notions with other ethical values, with medical effectiveness as a key determinant. Priority access to scarce resources may be given 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. Recommended actions include:
- Integrating knowledgeable professionals and organizations (e.g., geriatricians, palliative care clinicians, long-term care providers and organizations, home health providers, hospice providers) into local, tribal, State, and regional disaster preparedness to fully incorporate palliative care into State and local disaster planning/training guidelines, protocols, and activities.
- Including pediatric-specific palliative care issues in all plans, and developing guidelines for treating them. Failure to do so will hamper the ability of health care workers to move children into palliative care.
- Basing planning on lessons learned from previous disasters (including war).
- Establishing practical measures of success in palliative care services in MCEs.
- Conducting gap analyses and tabletop exercises on how to integrate palliative care services into preparedness systems.
- Encouraging attention to palliative care in all four phases of emergency management (mitigation, preparedness, response, recovery) and in all relevant settings (prehospital, acute care/hospital, and ACS).
Casualties will be triaged at the site of the incident. Some patients will be deemed likely to die during 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, ACSs and providers need to be identified and used for this population during catastrophic MCEs. Recommended actions include:
- Building smooth links with supportive service organizations and personnel (e.g., home health, long-term care settings, hospice, and palliative care providers) for those expected to die.
- Working with first responder personnel and local and regional disaster response planners (e.g., EMS, fire, police, departments of public health, community health clinics, local and regional governmental entities) to develop clear guidelines and protocols to address the following issues:
- ACSs for palliative care.
- Who delivers treatment and support (e.g., spiritual, psychological) and how.
- What levels of care are to be delivered in what settings and by whom.
- Training of providers for the provision of appropriate palliative care at all treatment sites.
- Lines of authority and the clear identification of responsible personnel.
- Identification of location and use of stockpiles, supplies, and personal protective equipment.
- Building strong support for triage and standards of care to respond to dire circumstances or scarce resources by redefining public expectations and training of palliative care and other health professionals. Actions would include:
- Establishing psychological and ethical support for front-line responders.
- Establishing flexible methods of response for revising triage decisions and treatment when affected persons are doing better than expected.
- Expecting anxiety and strong emotions and have security and appropriate medications available.
- Establishing guidelines and protocols for "just-in-time" training and palliative service delivery from secondary providers at all treatment sites.
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Arranging for Medical Supplies and Equipment
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 too many organizations from unknowingly relying on the same suppliers. 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. To ensure supplies and equipment are available:
- Stockpile palliative care medications in each community for disaster response, including injectable morphine, dihydromorphone, and haloperidol, subcutaneous butterfly needles, dressings, antipyretics, steroids, and diuretics.
- Plan for the needs of patients who are chronically dependent on dialysis, ventilators, or the supplies such as dressings, splints, syringes and oral droppers, incontinence supplies, beds or cushioned surfaces, and personal protective devices.
Long-term care facilities, inpatient hospice settings, or home nursing care offices are possibilities for storage sites. Controlled substances in lockboxes are probably most naturally kept at nursing homes, where systems for storage of these drugs are already in place. Another option would be designated pharmacies. The effectiveness of these two options obviously would depend on their proximity to the disaster scene.
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Training in palliative care may include:
- Building on existing training models to incorporate palliative care services training. Training in palliative care must occur prior to an MCE and will involve many layers of education and practice.
- Cross-training personnel from other areas of expertise as well as other areas of the country to provide aid. In addition, lay persons can be recruited to serve (e.g., bus drivers, mail deliverers, anyone from the community who is willing to attend the training). Education and training should be competency based, with programming specific to the individual's role in emergency response.
- Incorporating palliative care training for first responders as part of disaster and MCE planning.
- Training all first responders to use oral and injectable morphine to manage pain and symptoms until licensed personnel are available. How to locate and access the medication should be part of training. Ensure that all first responders are familiar with the basics of psychosocial counseling for peer-to-peer and provider/patient support.
- Developing and implementing competency-based evaluation and measurement.
- Providing personal protection and individual response training that first responders ordinarily receive to lay or professional individuals designated as responsible for providing palliative care.
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Recruiting Professional Providers and Volunteers
With planning, a community can develop a reasonable reserve capacity for providing palliative care during an MCE. Local palliative assistance teams can be recruited from a variety of practice settings (e.g., hospices, hospitals, long-term care) and disciplines (e.g., physicians, nurses, social workers, chaplains). These teams can be developed locally with sponsorship from groups such as senior centers, churches and synagogues, hospices, long-term care providers, nurses' organizations, senior citizens' organizations (e.g., AARP, the National Hospice and Palliative Care Organization, the American Academy of Hospice and Palliative Medicine, and local hospitals and palliative care programs.
Planners should consider incorporating these teams under the MRC and the Community Response Team (CERT) for deployment depending on the nature and scope of an incident. Planners also should consider extending the credentialing of palliative care disaster volunteers into the existing disaster response Federal/State and local legal/insurance systems in order to expand community capacity through such mechanisms as the ESAR-VHP. These rapid response teams would supplement, not replace, local palliative care services.
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Arranging Mental Health and Spiritual Care Services
Psychological and spiritual counseling and support should be made available to those not expected to survive and their families.
Local mental health care providers, such as psychologists, chaplains, and health care providers, are a vital resource. A number of behavioral, psychological, and spiritual response plans have been developed and can serve as the basis for the planning and delivery of these services in an MCE (go to box).
Support will be needed by response providers as well. As the volume of patients triaged to palliative care expands, so will the strain of providing mass palliative care. These individuals also will need to have periodic emotional and psychological relief (e.g., by having them rotate to teams that are doing other types of work, such as delivering food); this is important for the welfare and morale of the provider corps as a whole.
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Managing the Dead
A number of behavioral, psychological, and spiritual response plans can serve as the basis for the planning and delivery of these services in an MCE. For example, Disaster Mortuary Operational Response Teams (DMORTs) are composed of private citizens, each with a particular expertise. DMORTs work under the guidance of local authorities, providing technical assistance for body recovery and assisting with identification of remains. Recommendations include:
- Pay attention to and be respectful of religious beliefs and approaches to body management.
- Do all that is possible to document the identity of the dead and the disposition of the body, for the benefit of the survivors. After a disaster, the identification and disposal of human remains are typically handled by the local community. The remains typically pose no immediate health risk in a natural disaster but may pose considerable risk in an epidemic.
- Address issues such as the supply of body bags and refrigerator trucks, ways to catalog bodies, and cremation with local funeral directors prior to an MCE. Include DMORTs, funeral directors, and medical examiners in disaster planning and drills.
Information about Disaster Mortuary Operational Response Teams is available at http://www.dmort.org/.
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