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TAKING CARE: ETHICAL CAREGIVING
IN OUR AGING SOCIETY


Table of Contents

The President's Council on Bioethics
Washington, D.C.
September 2005
www.bioethics.gov

Glossary

Advance (treatment) directives: Written or oral declarations, by individuals capable of making informed and voluntary decisions, indicating preferences regarding future medical treatments. For example, they may indicate a preference for or against certain medical interventions in specified clinical situations. Or they may specify surrogate decisionmakers, in the event that the individual becomes incapacitated. Advance directives are of two kinds: instruction directives and proxy directives. (See below)

Alzheimer's disease: A progressive degenerative disease of the brain that causes impairment of memory and dementia, manifested by confusion, visual-spatial disorientation, inability to calculate, and deterioration of judgment; delusions and hallucinations may occur. The most common degenerative brain disorder, Alzheimer's disease makes up 70 percent of all cases of dementia. Onset is usually in late middle life, and death typically ensues in 5-10 years. (Stedman's Medical Dictionary)

Best care: A standard for caregiving that always seeks to serve the patient's current welfare. It emphasizes benefiting the life the person now has, while considering also his own earlier ideals, preferences, and values as an integral part of his current well-being.

Best interest: A legal standard of caregiving for incompetent patients, defined by the courts in terms of what a "reasonable person" would decide in the same situation. A consideration of best interests generally attempts to weigh the burdens and benefits of treatment to the patient in his present condition, when no clear preferences of the patient can be determined.

Caregiver: Any person who cares for an individual needing help taking care of himself, in ways that range from meeting the basic needs of everyday life to offering medical, nursing, or hospice care. Caregivers may be paid or volunteer; they include family and friends as well as doctors, nurses, social service providers, and hospice professionals.

Dementia:   The loss, usually progressive, of cognitive and intellectual functions, without impairment of perception or consciousness; caused by a variety of disorders including severe infections and toxins, but most commonly associated with structural brain disease. Characterized by disorientation, impaired memory, judgment, and intellect, and a shallow labile affect. (Stedman's Medical Dictionary)

Extraordinary care: Generally used to refer to medical treatments that, in the particular circumstances, impose undue physical or personal burdens on the patient or that are not likely to substantially improve the patient's condition but merely prolong his dying. Extraordinary care is considered ethically optional, rather than obligatory.

Healthcare power of attorney:   A legal form of written proxy directive. (See below)

Hospice: An institution that provides a centralized program of palliative and supportive services to dying patients and their families, in the form of physical, psychological, social, and spiritual care; such services are provided by an interdisciplinary team of professionals and volunteers who are available at home and in specialized inpatient settings. (Stedman's Medical Dictionary)

Instruction directive: This form of advance directive is a written or oral statement of treatment preferences created to guide the choices of physicians or other decisionmakers when the patient is no longer able to indicate his preferences. It can be very specific, indicating specific treatment preferences for specific medical circumstances, or it may be more general, stating only (for example) that the patient does not wish to undergo "extraordinary" treatment measures when recovery is improbable and death is near. The written form of an instruction directive is also referred to as a living will.

Ordinary care: Generally used to refer to readily available medical treatments whose benefits to the patient are likely to outweigh the burdens and risks and that have a reasonable possibility of improving the patient's condition. Ordinary care is considered ethically required.

Principle of double effect: A traditional principle in ethics that aims to provide specific guidelines for determining when it is morally permissible to perform an action in pursuit of a good end in full knowledge that the action will also bring about certain bad results. It generally states that, in cases where a contemplated action has both good and bad effects, the action is permissible only (a) if it is not wrong in itself, and (b) if it does not require that the agent directly intend the evil result. For example, the principle of double effect is used in medical ethics regarding end-of-life care to justify giving morphine to relieve intense pain (the intended effect), even though doing so increases the risk of respiratory arrest and an earlier death (the second effect), provided that one is not intending to produce death by administering the drug. In contrast, attempts to relieve the pain by deliberately killing the patient cannot be justified, because the action is wrong in itself.

Proxy directive: This form of advance directive is a written or oral appointment of one or more specific individuals to serve as the surrogate decisionmaker(s) for a person when he is incompetent to decide for himself.

Prudence: An ethical excellence of heart and mind, displayed in an eagerness to seek and an ability to find the "just right" course of action, attaining the best outcome possible in the light of present circumstances. It is sometimes also known as practical wisdom.

Stokes-Adams episode: A temporary loss of consciousness due to transient interruption of electrical impulses in the heart, and the consequent failure of the heart to pump blood to the brain.

Substituted judgment: A legal standard of decisionmaking on behalf of incompetent persons that seeks to make treatment decisions by trying to discern or guess what the patient himself would decide were he capable of doing so. It may be informed by the patient's verbal instructions or the surrogate decisionmaker's recollection of the patient's values and attitudes during his years of competence.

Surrogate decisionmaker:   A person appointed either by the patient, or, if the patient fails to appoint someone, by the courts, to make medical decisions on behalf of an incompetent patient.

 

 


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