The Hows and Whys of Patient Advocacy

by David Wayne Smith, DEd, FACFEI, Charles Rastatter, EdD, John D. Ellis, JD, David B. Hammond, CFP, and Jeffrey Lisse, MD

The Hows and Whys of Patient Advocacy

Like most people, you probably know or know of someone hit by a personal tragedy that has left him or her gravely ill or injured. Or you know someone with a chronic ailment that can lead to severe disability and/or death. In the vast majority of situations like these, people get the medical care and other help they need. But too often, they do not, and the lives of the individuals involved — and their families and friends — are critically and negatively affected. We believe that how well these situations are resolved is directly related to two sets of interventions and how well they are carried out. The first you might call “tragedy advocacy action” — someone undertakes to advocate or act for the individual who is unable to act for himself or herself. The second you might call “tragedy preparation action” — we make certain preparations so that if someone has to act on our behalf, we’ve made it easier for them to do so.

That “someone” is known as a patient advocate. A patient advocate is usually a family member or close friend of the patient. Sometimes an acquaintance may fill the role, or a professional may be hired. In any case, the advocate accepts responsibility for making certain that the patient’s rights are protected, that medical care is appropriate and given in a timely manner, and that all benefits due the patient (including financial benefits) are provided. As if this weren’t difficult enough, the advocate must often work in an environment burdened with grief, stress, confusion, anxiety, and anger.

The main goal of this article is to make the advocate’s job easier by explaining what is involved. The article should also help the health professional better understand the advocate’s role, to the benefit of both. Finally, the article explains what each of us can do now to lighten the load for a patient advocate we might need in the future.

When is an advocate needed?

We believe there are at least four levels of events that call for a patient advocate.

Level one events are situations that are life-threatening and in which an individual is unable to act on his or her own behalf. Such situations include accidents or conditions that make an otherwise competent individual unable to make decisions for a prolonged period of time. The individual might be unconscious, in a coma, or heavily medicated.

Level two events include situations in which a person is temporarily unable to act for himself or herself because of, for example, severe physical or psychological trauma. The situation is not immediately life-threatening, but immediate decisions have to be made about treatment, and the individual is temporarily unable to make these decisions.

Level three events include situations in which competent individuals are unaware of their rights, available benefits, and treatment options. The individuals might have medical conditions such as cancer, severe arthritis, or heart disease that can lead to prolonged incapacitation and/or eventual loss of life.

Level four events involve situations in which individuals lack the mental ability to make decisions related to their rights, treatment, and benefits. These individuals might have medical conditions similar to those presented in levels two and three.

Advocacy in action

What a patient advocate needs to do depends a great deal on the situation. Here are real-life examples of advocates in action at the four different levels we just outlined.

Level one. Recently, the senior author of this article received a frantic call from his son’s wife asking for help. Her husband had been thrown from a horse and lay near death in a hospital more than 500 miles from the author’s home. As you would expect, the author hastened to his son’s side.

When he arrived at the hospital, a Level I Trauma Center, he found that his son had several fractured ribs, bruised lungs, and a fractured clavicle; had significant breathing problems, which required his being strapped to a roto-bed (which rotates every few minutes to foster breathing); had a tube in his throat to keep his airway open; and was in a drug-induced state to ensure he remained completely quiet while machines assisted his breathing and monitored all important bodily functions. His son remained in that state for three long weeks. There were numerous minimal ups and many critical downs in his condition, accompanied by many very close calls with death.

By the author’s account, when he first saw his son, he experienced a feeling he described as “terror.” Tears welled in his eyes and a feeling of helplessness overwhelmed him. A person who likes to be in charge, he found himself in an unfamiliar and frightening situation in which all decisions related to his son’s life were being made by strangers. At that point he determined he would become part of the treatment team. He would, indeed, become his son’s “patient advocate.”

Last Reviewed on February 8, 2012

David Wayne Smith is Director of the University of Arizona’s Disability Assessment Research Clinic, which is part of the Arizona Arthritis Center. Charles Rastatter is Director of Vocational Assessment at the Clinic. John D. Ellis is a practicing attorney. David B. Hammond is a financial planner. Jeffrey Lisse is Chief of Rheumatology in the Department of Medicine at the University of Arizona.

Statements and opinions expressed on this Web site are those of the authors and not necessarily those of the publishers or advertisers. The information provided on this Web site should not be construed as medical instruction. Consult appropriate health-care professionals before taking action based on this information.

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