COPING WITH DISASTER: INFORMATION FOR PATIENTS AND FAMILIES
Q: What is a coma?
Coma refers to a state of general "brain failure" characterized by severe depression of level of consciousness. Coma outwardly resembles sleep, but is physiologically very different. Sleep is characterized by highly organized and complex electrical brain activity, and can easily be reversed. With stimulation, a sleeping person can be quickly aroused to a state of complete alertness. By contrast, coma is characterized by slowing and depression of electrical brain activity, and implies a neurologic deficit. No matter how much the patient is stimulated, he or she is incapable of becoming fully alert.
Any serious injury to both cerebral hemispheres or the brain stem can produce coma. All causes of coma can be divided into two main categories: (1) structural (e.g. trauma, bleeding, stroke), or (2) toxic/metabolic (e.g. drug overdose, lack of oxygen).
Q: Prognosis in coma: My family member is in a coma. Will he or she ever wake up?
Prognosis in coma can only be made on a case-by-case basis. However, certain general rules do apply. The cause of coma is probably the most important factor. Patients in coma because of toxic ingestions or metabolic abnormalities often have complete recovery whereas other etiologies such as vascular disease and anoxia tend to do worse. Head trauma falls between the two extremes. Younger people always have a better chance of recovering from coma.
Regardless of cause it is imperative that treatment and monitoring be initiated as soon as possible for the most desirable outcome. Because they are completely immobilized and have a weak ability to breath, comatose patients are at high risk for secondary medical complications such as pneumonia, infection, and pulmonary embolism which can be fatal. The presence or absence of certain clinical signs of neurologic damage is also quite important in predicting outcome. Some studies have shown that patients with the best chance of recovery after a hypoxic-ischemic event had intact brain stem function and spontaneous roving eye movements on initial examination after onset of coma and evidence of intact cortical function (pattern of motor responses) at day 1 after the onset of coma. After several weeks in a coma patients will invariably progress to a persistent vegetative state. It is important to realize that "waking up" after coma does not simply mean opening one's eyes or moving spontaneously but rather meaningful response to stimuli such as following commands or conversing intelligibly.
Q: Coma: Is there anything I can do to help?
Although nobody knows for sure, it is possible that patients in coma can respond to the presence of loved ones at the bedside. A familiar voice or touch may have a calming or reassuring effect on the patient, and certainly can't hurt. We encourage as much bedside contact between the patient and family members as is possible, as long as it does not interfere with medical care. Playing a patient's favorite music may also be helpful. The main rule of thumb is to be sure that your contact at the bedside does not lead to increased agitation, which can occur if the patient is semi aware and frustrated by their inability to communicate or express himself or herself. If this occurs, it is probably best to leave the patient alone.
Q: What is a vegetative state?
Persistent vegetative state describes the chronic condition that almost invariably emerges after coma. It comprises a return of wakefulness (e.g. eye opening), sleep-wake cycles, and reflex movements (e.g. sucking, startle responses, grabbing), accompanied by a total lack of cognitive or mental activity of any type. The vegetative state is produced by intact function of the brain stem and "deeper" (i.e. subcortical) regions of the brain, without activity of the cerebral cortex itself.
Persistent vegetative state refers to this condition in its permanent form and designates patients who survive for prolonged periods (sometimes years) following a severe brain injury without ever recovering any outward manifestations of higher mental activity. While these patients look awake and often alert they have no discernible meaningful interaction with their environment. Recovery of conscious awareness after one year in a vegetative state is exceedingly rare.
Q: What is brain death?
Brain death is defined as irreversible cessation of all brain functions, including the brain stem. Death may be declared in an individual who has sustained brain death. A clinical diagnosis of brain death can be made if the following clinical conditions are met:
Brain death is a clinical diagnosis. Confirmatory tests ( i.e.: EEG, four-vessel angiography, transcranial Doppler sonography) are not essential to the declaration of brain death, and are only necessary in selected patients in whom clinical testing cannot be reliably performed. These cases may include situations in which the patient cannot be adequately examined (e.g. severe facial trauma).
- Cerebral function must be absent. This means no behavioral or reflex responses mediated above the spinal cord.
- Brain stem functions must be absent. This includes unreactive pupils, the absence of ocular responses, facial sensation and motor responses, and lack of cough and gag reflexes.
- The patient must be apneic. This means absence of spontaneous respiration in response to a hypercarbic stimulus.
Once a patient has been declared officially and legally brain dead, he or she is disconnected from the ventilator. The only exception occurs when the family of the patient might consider organ donation.
Q: Withholding and withdrawal of life support: My loved one is in a coma, the prognosis is dismal, and he or she wouldn't want to be maintained this way. What can we do?
The terms "withholding and withdrawing of life support" refer to the processes in which various medical interventions that have been deemed medically futile are either not given to, or are removed from critically ill patients with the expectation that they will die as a result. These interventions may include mechanical ventilation, surgery, antibiotics, blood pressure medications, general medications, blood transfusions, blood draws, feedings, and fluids.
Most people make the decision to withdraw life support when they realize that further aggressive care will not alter the expected final outcome (i.e. death), but will extend and prolong the patient's suffering.
Discussions regarding the withholding or withdrawal of treatment are raised only after there is clear clinical evidence that current treatment has not resulted in desired outcomes and there is little or no chance of meaningful patient recovery. These decisions are usually made by family members based on the previously stated wishes of the patient, or are based on a written advanced directive. Once it is agreed aggressive medical management will cease, comfort care measures are often instituted. Comfort care measures usually involve the administration of sedatives (i.e.: morphine, fentanyl) to reduce any potential patient pain and suffering once life-support interventions are withheld or withdrawn.
Q: Recovery and rehabilitation: My loved one has survived a serious neurologic injury. What's the next step?
Neurologic disorders cause temporary or permanent impairments that impede simple daily functions as well as complex intellectual and physical activities. Once a patient has become medically stable and all acute treatment interventions have been performed, the road toward recovery and rehabilitation can begin. Rehabilitative measures to maximize functional recovery should begin as soon as possible after illness onset. These measures are directed toward returning the patient to as independent a lifestyle as possible. Rehabilitation may include physical, occupational, speech, cognitive, psychological, and vocational treatment modalities. These therapies serve to maximize the individual's physical strength and motor ability, independence in performing activities of daily living (e.g. dressing, hygiene, ambulation), ability to regain financial independence, reintegration into their community and social network, and promote one's psychological well-being.
A comprehensive rehabilitation program will include an interdisciplinary team: the physician, physical therapist, occupational therapist, speech therapist, neuropsychologist, rehabilitation nurse, vocational counselor, and social worker. Some patients may require intensive inpatient rehabilitation, while others may return home and attend an outpatient therapy program. For individuals with more severe permanent disabilities, placement into a skilled nursing facility may be necessary. Patients who do not require rehabilitation services may still benefit from short-term visiting nurse services to ease their transition back home.
Benefits and improvements in function are greatest within the first year after onset of illness, although changes can continue to occur over time. An individual's motivation and commitment to rehabilitation is clearly one of the most significant factors that can contribute to his or her long-term functional outcome.
Recovery and rehabilitation is a family affair. It greatly impacts on the lives of the patient's primary caregiver, as well as other significant family members and friends. For the patient it is often a process of learning new ways of performing old tasks, while for the caregiver it may involve adapting to and accepting the individual as he or she now is, which may include permanent physical and/or cognitive limitations.
Q: How do we cope after we're home from the hospital?
Just as a patient must adapt to his or her current physical and intellectual level of function, the family must learn to adjust to these changes. There are numerous organizations which serve as valuable clearinghouses of information for a variety of medical conditions. Support groups for both patients and families are excellent forums in which to secure support, understanding, and guidance during this often-stressful and challenging time. Most organizations (i.e.: MS Society, National Head Injury Foundation, etc.) often have local chapters in communities throughout the country. Libraries, telephone directories (yellow and white pages), 1-800-information, and the internet are some avenues through which to locate these organizations. There are also Federal and State agencies that provide services to individuals who have permanent impairments which require accommodation in the workplace or a change in career, securing special parking privileges or transportation alternatives, etc. Agencies including Independent Living Centers, Mayor's Office for the Handicapped, and Vocational and Educational Services for Individuals with Disabilities (VESID) can be contacted for information and referral to other assistance centers. If a family member is receiving rehabilitation services, professionals at those facilities should be able to provide other resources available within the community. Be your own best advocate and gather as much information as you can regarding the resources available which can maximize a patient's potential to return to a fulfilling and productive life.
Q: Second opinions: My relative is in a coma and the prognosis isn't very good. Would a second opinion be helpful?
In general, the best time to seek a second opinion for a critically ill neurologic patient is very early in the course of the illness, when the situation is still evolving and things can be done to change the outcome. In general, emergency transfers from one hospital to another are appropriate when the patient needs some type of intervention or specialized care that cannot be provided at the original hospital. You can call 212-305-7236 twenty four hours a day to speak to a physician about the possibility of transferring a patient to the Columbia Neuro-ICU.
In many cases, a second opinion is requested to judge prognosis in a patient who is comatose. If the patient has been comatose for a long time (>2 weeks) and is not medically active, transfers are usually not helpful because at that point the patient requires general supportive medical care which can be provided adequately at almost any institution. In the vast majority of cases, an expert second opinion to judge prognosis can be obtained from a neurologist affiliated with the same hospital. Bringing in an outside neurologist from another hospital is rarely necessary.
Q: Transfers: Is it safe to transfer a very sick patient in an ambulance?
It is exceedingly rare for a patient to be "too sick" to transfer in an ambulance to another hospital. Ambulances are usually staffed by technicians trained in advanced cardiac life support. Although there may be some risk of an untoward event occurring while in transit, this must be measured against the potential benefits of initiating definitive treatments as soon as possible. Sometimes it is appropriate to stabilize the patient for 12 to 24 hours before a transfer. In other cases, if a life-saving surgical intervention isn't performed immediately, there may not be a tomorrow. Each case is different, and the risks and benefits have to be weighed individually. In many cases, however, the real risk is in not transferring a patient as soon as possible.
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August 27, 2014