MEDICAL ADVOCATE SERVICES FOR CANCER PATIENTS

I. Assistance to Help Ensure that Basic Principles of Quality Cancer Care Are Met

In 1999, the Institute of Medicine’s National Cancer Policy Board (NCPB) published a report titled, “Ensuring Quality Cancer Care,” which observed in its Introduction,

"We all want to believe that when people get cancer including ourselves and our relatives, they will get health care of the highest quality."

In the last 10 years, much has been done to improve the quality of cancer care in the US. However, as Stephen Edge, M.D., a cancer surgeon at Roswell Park Cancer at Buffalo, New York recently declared, “There is clear documentation that not all Americans get the best cancer care, even though it is available. We definitely have wide variations.” (2) 

The medical advocate assistance offered here for cancer patients is intended to help assure that certain basic principles of quality care are met, including: 

1. Assure an accurate diagnosis

Thomas Burke, M.D., the physician-in-chief at MD Anderson Cancer Center in Houston, recently observed, “About 75-80 percent of cancer diagnoses can be done correctly” in settings outside specialized hospitals. He estimates that in 5-10 percent of cases, patients coming to MD Anderson have an incorrect diagnosis made by a community pathologist. The lesson is that in many cases, it is wise to get a second opinion regarding the diagnosis. (2)

It is also very important to assure that molecular markers of a tumor that can guide therapyare identified using currently recommended tests. The success of targeted therapies depends in part on the reliability of those tests and the accuracy with which they are run. Some tests can be unreliable and the risk of inaccuracy is increased when they are performed by laboratories that do not comply with the testing guidelines of the College of American Pathologists and the American Society of Clinical Oncology. (3)

2. Choose a treating physician and hospital with a lot of experience treating the type of cancer in question

Most patients with common cancers can be treated just as well in a community setting as a comprehensive cancer center. The National Comprehensive Cancer Network (NCCN), an alliance of leading cancer centers, recently described the kinds of cancer patients whose needs may be better met in a major cancer center:

"While a majority of cancer care can be obtained in the community setting, an estimated 10-15 percent of patients with cancer should have the option of treatment at a major cancer center. This includes:

• Individuals with uncommon and complex cancers such as brain tumors, sarcoma, head and neck cancers and others, which are infrequently seen and treated by most physicians.

• Individuals with cancers, such as lymphoma, that are difficult to diagnose and where accurate diagnosis is essential in determining the appropriate treatment.

• Individuals requiring complex surgeries where research has validated improved survival when surgery is performed at high volume centers by high volume surgeons.

• Individuals who require other complex treatment, such as a stem cell transplant, where special expertise and an experienced multidisciplinary team is essential.

• Individuals who want or need access to clinical trials that are not available in the community.

“Lacking access to large academic cancer centers may be a life and death issue for those who fall into these categories.” (4)

The National Cancer Policy Board has issued a recommendation which also calls for treaters with “extensive experience” when patients need to undergo certain types of procedures:

Choose a treating physician and hospital with a lot of experience treating your type of cancer.

Today, NCCN guidelines cover 97 percent of all patients with cancer and are updated on a continual basis. Researchers routinely analyze the levels of cancer treaters’ adherence to the guidelines. While there may be valid reasons for variance from the guideline recommendations, compliance with the guidelines is very high at leading cancer centers. Therefore, as Ken Lichtenfeld, M.D., the deputy chief medical officer of the American Cancer Society has said, “Still, it’s appropriate for patients to ask, ˜Are you following the NCCN guidelines?’' (2)

1. Institute of Medicine. Ensuring Quality Cancer Care. National Academies Press (1999).

2. Begley S et al. What You Don't Know Might Kill You. Newsweek, October 26, 2009.

3. Kolata G. Cancer Fight: Unclear Tests for New Drug. New York Times, April 19, 2010.

4. Danielson L et al. Commentary--Access to Cancer Care in the Era of Restricted Provider Networks. NCCN eBulletin, Vol. 2, Issue 18, September 7, 2010.

5. Powers E. The NCCN guidelines: how do they relate to community oncology practice? Community Oncology. 2004;1:98.