Information about HIV/AIDS health care decisions
For patients with HIV/AIDS to make health care decisions, physicians must give them specific information that allows them to imagine themselves becoming ill or approaching death and facing certain decisions, says Peter Singer, MD, director of the Joint Centre for Bio-ethics at the University of Toronto.
Singer and colleagues at the Ontario-based Canadian research center have developed a specific advance directive for patients diagnosed as HIV-positive or with AIDS. The instructions in the directive include the following information:
o Current health with potentially reversible illness.
For this situation, imagine you are in your current health, and you develop a potentially reversible illness for which treatments are available. Examples would include pneumocystis carinii pneumonia, central nervous system toxoplasmosis, and cryptococcal meningitis.
With appropriate treatment, approximately 50% to 75% of patients return to their state of health before their illness, although other long-term treatments may be necessary. About 20% to 50% of patients relapse and do not recover their previous state of health, and about 10% to 30% of patients die as a result of their illness. These outcomes vary, depending on whether this is the first episode of the illness or a relapse, the severity of the illness, and the other illnesses that also may be present.
o Chronic health with physical disability.
Some of the HIV-related conditions do not have effective treatments. These include cryptosporidial diarrhea, Mycobacterium avium complex, lymphoma, visceral Kaposi’s sarcoma, and wasting. These conditions may stabilize with some forms of treatment, but they usually lead to some physical disability that may impair activities of daily living. Patients with conditions that result in chronic illness and disability usually live between six months and two years following the onset of illness.
o Dementia.
Conditions such as AIDS dementia and progressive multifocal leukopathy often persist for more than a year. This means patients would have a progressive and irreversible deterioration in brain function. They would be awake and aware, but they would have trouble thinking clearly, recognizing people, and communicating. Dementia gradually worsens over months or years. Dementia can be described as mild, moderate, or severe. The directive describes levels of severity.
o Life-sustaining treatments.
The directive lists six specific treatments. For example: A ventilator is used when a patient can’t breathe. A tube is put down the patient’s throat into the lungs. The ventilator is needed as long as the lungs aren’t working. Without the ventilator, a patient with respiratory failure probably will die within minutes to hours. With the ventilator, the chance that a patient will live depends on the cause of the respiratory failure and the seriousness of the patient’s other illnesses.
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