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Specifying Care for Different Situations

Despite rapid technological advances in medicine, much about the end of life remains uncharted. For example, medical experts disagree over whether comatose patients can feel pain and over whether some treatments are universally effective.

People who have strong feelings about what medical care they want to receive are usually guided by personal experience rather than extensive medical knowledge. For example, if you have watched a parent suffer a prolonged death while attached to a respirator, you may opt not to have a respirator as part of your medical care. If a friend who was diagnosed as terminally ill was much improved by a newly developed antibiotic, you may demand that drugs be administered to you, no matter what the medical prognosis.

To accommodate such wishes, while balancing the unknowns of medicine, some flexibility is built into health care documents. You can specify that you should receive different kinds of medical care under certain conditions defined by your state's law. In most states, this means you can leave specific instructions for the care you want when you are permanently unconscious and when you are diagnosed to be close to death from a terminal condition. In a few states, other conditions are covered as well.

For example, medical personnel usually give those diagnosed to be terminally ill a short time to live—less than six months or so. Some people feel that the best medical care under such a prognosis would be to have as much pain and suffering alleviated as possible through drugs and IVs, without any heroic medical maneuvers, such as invasive surgery or painful diagnostic tests.

However, patients often prove doctors wrong. Some people who are expected to die of a terminal illness within a few months stabilize or improve and live on for many years. If you opt to direct that no life­ prolonging treatments be provided, you gamble that your condition will not improve—a gamble you must weigh against the chances you will beat the odds.

Permanently unconscious patients can be kept alive for many years with some mechanical assistance to keep breathing, circulation, and other vital bodily functions operating. While chances are statistically minuscule that these patients will ever regain consciousness, in these cases, there is a chance that the diagnoses were incorrect in the first place.

There is no general rule to offer on this topic. You must be guided by your own very personal definitions of quality of life. Some people direct that all possible medical treatments be administered to them if they become permanently unconscious, just in case a medical cure becomes available. Others feel strongly that life without consciousness would completely lack meaning—and direct that all medical procedures, including food and water, be discontinued. Still, others walk the middle ground, opting to be kept alive by feeding tubes, but not by other life­ sustaining measures.

If you are having a difficult time making this choice, you may get good guidance by discussing the matter with a doctor or other experienced health care worker you trust. Internet resources also discuss the medical, spiritual and philosophical aspects of this decision.

If you want to direct that you receive different types of treatment in different situations, the following information will help you understand and evaluate the various conditions for which you can leave directions.

Close to Death From a Terminal Condition

Generally, a terminal condition is any disease or injury from which doctors believe there is no chance of recovery and from which death is likely to occur within a short time—such as the final stages of cancer.

State laws on health care directives define terminal condition slightly differently, but commonly refer to it as "incurable" or "hopeless." Many state laws explain in addition that a patient who is terminally ill will die unless artificially supported through life­sustaining procedures.

Most states require that one or two physicians verify that the patient has a terminal condition before health care instructions will go into effect. In some states, this verification must be in writing.

Permanently Unconscious

Permanent unconsciousness may be caused by various medical conditions, head traumas or other body injuries. Sometimes, permanent unconsciousness is referred to as a persistent vegetative state (PVS).

While permanently unconscious people appear to go through sleep cycles and to respond to some noises and physical stimulation, medical experts disagree about whether a permanently unconscious person

is capable of experiencing pain or discomfort. Most permanently unconscious people do not require mechanical assistance with breathing or circulation but must be provided food and water—usually through tubes inserted in the veins or stomach—if the condition persists.

Generally, people who lose consciousness either recover it within a short time (often a matter of hours, days or sometimes weeks) or enter a permanent coma or a persistent vegetative state in which it is extremely unlikely that they will ever regain consciousness. Medical personnel usually declare that a person who remains in a persistent vegetative state for many months without change has passed into a terminal condition.

Once unconsciousness is diagnosed as permanent, the chances of recovery are statistically extremely low. But medical technology (respirators and tube feeding and hydration) can typically keep an unconscious person alive indefinitely—48 years in one case. Consequently, the only way to allow a permanently unconscious person to die naturally may be to discontinue tube feeding and hydration.

To complicate matters, the external symptoms of permanent uncon­sciousness are somewhat subjective and can be misdiagnosed or the subject of dispute. The highly publicized case of Terri Schiavo involved a Florida woman kept alive by feeding tubes for more than ten years.

While most medical experts declared her to be unconscious of her surroundings, at least one doctor offered the opinion that her responses to stimuli were not just reflexive, but were, in fact, evidence that she was conscious of her environment. (After her death in 2005, an autopsy showed that she had massive and irreversible brain damage and was indeed in a persistent vegetative state.)

Other factors, such as overmedication, can cause an unresponsive, unconscious condition that may abate once the treatment is halted or changed. To guard against misdiagnosis, many states require two physicians, at least one of whom is an expert on such conditions, to declare a patient permanently unconscious before any stated wishes are carried out.

In cases such as these, the person you appoint as your health care agent can play a crucial role, making sure that diagnoses are not made in haste or that second opinions can be sought if there is reason to doubt the initial diagnosis.

Other Medical Conditions

A few states define a condition where death may not be imminent but the medical condition is nonetheless irreversible. If your state's official form addresses a condition like this, we allow you to choose the kind of treatment you want.

Special Conditions: State-by-State

If you live in one of the following states, you will be asked about the additional condition or conditions listed here. As you prepare your document, the program defines these conditions to help you make your decisions about care.

Florida

End-Stage Condition

Illinois

Incurable or Irreversible Condition

Maryland

End-Stage Condition

North Carolina

Advanced Dementia

Oklahoma

End-Stage Condition

Oregon

Advanced Progressive Illness

Pennsylvania

End-Stage Medical Condition

Tennessee

End-Stage Illness

Texas

Irreversible Condition

If the Burdens of Treatments Outweigh the Benefits

In addition to addressing your care in the specific conditions outlined above, you will also have the opportunity to give your agent or other surrogate decision-maker the power to withhold or withdraw medical treatments if he or she determines that they are not in your best interest. (This option is not allowed in Oregon, which requires a health care form that covers only certain conditions.)

This broad, catchall instruction will be offered to you only if you have stated that you do not wish to receive life­prolonging treatment or artificially administered food and water in all other conditions. It lets your decision-maker evaluate your situation and direct that treatments be withheld in situations that may go beyond those conditions defined by your state's law. One good example of this is late­stage Alzheimer's disease, which can fall outside the definitions of both "terminal condition" and "permanent unconsciousness."

If you grant this power, a clause like the following will appear in your document:

If I have expressed, in this document or in any other manner, a clear wish regarding a specific treatment or condition, I want that wish to be followed. In all other situations, I direct that my life not be prolonged and that life-prolonging procedures not be provided or continued, in accordance with what my agent determines to be my best interest. In determining my best interest, my agent shall weigh the burdens of treatment against the expected benefits, considering my personal values to the extent known to my agent.

Your known wishes carry much weight in determining what is in your "best interest." In some states, they are conclusive—that is, the law says that a patient's wish is, by definition, the patient's "best interest." In other states, your doctor has some say in determining your best interest when it comes to medical decisions. Regardless of the law in your state, including this provision in your document should shorten the debate by putting clear authority in the hands of your appointed decision-maker.

Do understand that if you grant this power, you are giving your decision-maker considerable authority to decide what's best for you. Be sure to talk with your agent, if you have named one, and other loved ones about any specific benefits or burdens that matter to you. For example, would the burden of having to leave your home and spend the rest of your days in a hospital be so significant that you would not wish to receive life­prolonging treatment?

You can also include any strong feelings and preferences for your treatment when you are asked to provide additional instructions or wishes for your health care, in the next section of the program.

Who Makes the Decision

If you appoint a health care agent, your agent will be making the determination of whether or not a particular treatment is in your best interest.

If you do not appoint a health care agent, you can still include this power in your document. The decision will be placed in the hands of whomever the law appoints as your surrogate decision maker—usually a spouse or other close family member.