Has someone named you as his or her health care agent — the person chosen in advance to make health care decisions if they can no longer do so? Sometimes these representatives are referred to as a health care surrogate or proxy or an attorney-in-fact, depending on the state in which you live; N.C. uses “agent.”
If so, you have the responsibility of making medical decisions for this person (usually a relative or close friend) if they are no longer able to communicate, such as following a severe accident or at end-of-life. You will use information from their living will as well as personal knowledge you have of the person to decide whether or not to consent to surgery, refuse treatment, or utilize life-support mechanisms. In this process, you may encounter terms that need explanations. Following are some of these:
Diagnosis is the identification of the nature of an illness or problem. A terminal diagnosis refers to an irreversible and fatal disease or condition. A person may live for some time following being diagnosed with a terminal condition, but generally, regardless of intervention, the outcome can not be reversed and life expectancy is six months or less. Prognosis is the likely progression and outcome of a disease or ailment. Although this is considered an art of “foretelling” the course of the disease, it is important to ask the health care provider for this outlook. The answer will be based on the prospect of recovery or relapse as anticipated from the usual course of that condition or indicated by particular aspects of the person’s situation.
Acute care is short-term medical treatment for injuries resulting from trauma (such as a fall or auto accident) or a reversible disease with the expectation of recovery. Intensive care is the treatment of critically ill patients in the intensive care unit (ICU). Life-sustaining interventions are used to stabilize the patient with the prospect of recovery. Palliative care (or comfort care) is provided to patients who have an irreversible or fatal illness or condition. The goal is not cure but making the patient comfortable and meeting physical, spiritual and emotional needs during the final days of life.
During the decision-making process, you will probably hear someone (family member, medical professional, friend) use the term quality of life. This denotes a person’s general well being in regards to health and happiness. Some medical treatments can impair a person’s ability to enjoy life while providing few benefits. Some treatments can enhance and prolong life. Unfortunately, this subjective evaluation is occasionally made by others who come to the conclusion that a person’s life is not worth living.
Here is a pair of contrasting words you may encounter: benefit refers to an intervention that is expected to have a positive effect on the patient’s health; burden is used to describe an intervention with a potentially negative effect.
Life-sustaining interventions are those treatments that are meant to stabilize the patient’s condition and extend life as long as possible. These include hemodialysis (using a dialysis or kidney machine), mechanical ventilation, and artificial nutrition and hydration. Treatment or medication to alleviate pain or provide comfort is not included in this category.
Next week: More terms health care agents need to know.
Ruth Z. W. Johnson is an author, columnist and speaker who has served as both a family caregiver and a nurse in long-term care. She is available to share her experiences and knowledge of caregiving with groups, both small and large. She welcomes your caregiving comments and questions. Letters published only with reader’s consent. Contact her at email@example.com or P.O. Box 125, Alamance, NC 27201.