‘Cancer Patients Should Be Assertive, Know Their Rights’

NEW YORK—Cancer patients have more treatment options then ever before. But in order to make informed choices, they must have complete information. Patients who are assertive and know their rights are more likely to get that information, said Carol A. Sheridan, RN, MSN, AOCN, a clinical support specialist for Amgen.

Speaking to patients and caregivers during a Cancer Care, Inc., teleconference, Ms. Sheridan called attention to “A Patient’s Bill of Rights,” the document adopted by the American Hospital Association in 1973 to facilitate more effective patient care through increased collaboration between patients and physicians.

“One of the first things to realize,” Ms. Sheridan said, “is that as a cancer patient, you have rights. The Patient’s Bill of Rights includes the right to make decisions about your own care and to ask questions—as many as you want, of whomever you want—that relate to your diagnosis, treatment, and all follow-up care.”

One of the topics cancer patients on chemotherapy need to be most inquisitive about, she said, is the risk of infection due to a low white blood cell count. “There are several questions you should raise with your health care team,” she said. “Has the seriousness of this risk been described to you, relative to the chemotherapy you’re receiving? Have you received instructions about how to monitor yourself for early signs or symptoms associated with infection? For example, have they asked you if you have a thermometer and can read it?”

Ms. Sheridan advised patients to ask their health care team what degree of fever would cause them concern, what preventative options are available, and what risks a low count would present to the next cycle of chemotherapy.

For cancer patients to take an active role in their plan of care, they also need to understand the factors involved in their pain treatment, Ms. Sheridan said, and she provided a list of questions the patient should consider.

Questions About Pain Management

Have the causes of your pain been adequately explained?

Are there secondary side effects associated with your current pain medication regimen?

Have the strengths and weaknesses of all the potential pain treatment options been discussed?

Are there other strategies available to treat the pain such as massage or relaxation techniques?

Is there someone at your health care setting to help with these options?

In regard to nausea and vomiting, the causes, time frame of symptoms, and steps to take to alleviate the symptoms must be discussed.

The first visit to the doctor after the diagnosis is especially stressful, she cautioned. “Rocky beginnings are not uncommon, since newly diagnosed patients are experiencing shock, trauma, and disbelief.”

Patients should jot down a list of questions and concerns before they go, and if they are afraid they might miss information, they should ask their physician if they can bring a tape recorder.

“It is important that you do not feel rushed or leave with questions unanswered,” Ms. Sheridan said. “If the physician or nurse uses words that are unfamiliar, you should ask for an explanation.” Patients should consider rewording their questions in different ways if they have not understood an answer, or ask the physician to reframe his answer, she said.

‘Ask Again and Again’

“You can ask again and again, until you understand, and asking again also allows you to confirm the information you have received,” she said. “Don’t be embarrassed or ashamed. Remember this is your life, your body, and it lets your physician know you want to be an informed patient.”

The key is to move past these obstacles for a healthy exchange of information among the patient, the doctor and the entire health care team, Ms. Sheridan said. Patients who take an active role in informing themselves feel more hopeful and, according to some studies, tend do better, she concluded.