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.
