Does Ageism Exist in Cancer Care?
What if you had cancer and were not offered a new treatment because of your age? Studies show that some older cancer patients are not treated as aggressively as younger patients, or sometimes not offered certain treatments at all. For various reasons, there is a lack of older people enrolled in cancer clinical trials, so it is hard to know if cutting-edge treatments would benefit or harm them. Some researchers believe this is because of ageism, or age discrimination.
Learn why age may limit cancer care, and how to improve communication with your doctor to make sure that you are getting the best care possible.
A Disease of the Aging
Cancer is often referred to as "a disease of the aging." The National Cancer Institute finds that about 60 percent of all cancers are diagnosed in patients ages 65 or older. As the Baby Boomers mature in the next decade, people over age 65 will be the fastest growing part of the population, according to the U.S. Census Bureau. They will also live longer -- an average of 28 years longer than in the start of the last century. Therefore, it is predicted that the number of cancer cases will increase dramatically.
Ageism or Compassion?
Is there ageism in cancer care? "Definitely," says Deborah Boyle, RN, MSN, AOCN, FAAN, the advanced practice nurse liaison at the University of Texas MD Anderson Cancer Center. "We often assume that one's chronological age mimics his or her physiological age."
Chronological age is your actual age in years since birth. Physiological age is based on your overall health and how well you function daily. It may be measured by looking at your heart rate, how many stairs you can climb, or if you can take care of yourself independently. An example of this concept is when a doctor may say to a patient, "Mr. Smith, at 75 years old, you have the body of a 55-year-old."
"We know now that chronological and physiological age are not always the same. The elderly are a very mixed group who should be looked at individually to decide if they could tolerate an intense cancer treatment," says Boyle.
Michael Baum, MD, an emeritus professor of surgical oncology at University College London, says that older patients not receiving certain treatments is not so much from "ageism" but a sense of compassion, "even if it is a sort of misplaced compassion," he adds.
Until recently, cancer clinical trials excluded people over age 65. Many researchers and doctors believed that older patients, often with other medical conditions, would not tolerate or benefit from intense cancer treatments.
A study published in April 2000 in the Journal of the National Cancer Institute found that older women with breast cancer tended to receive hormone treatments only, whereas younger patients also received chemotherapy, radiation, or surgery. This was partly because the type of breast tumors in older women responded well to hormone treatments like tamoxifen. The study also found that, although the tumors were large, they were less aggressive and less likely to cause death in the older women.
Sami Diab, MD, lead author of the study, comments, "The older women did not appear to die from their breast cancers. You don't want to give aggressive treatments that will not affect their outcome." Diab does not believe the result was based on ageism but admits perhaps on "educated guessing." "There is a lack of data to guide our decisions about elderly patients. We are trying to apply data from a 60-year-old to someone who is 85," he says.
Baum agrees but believes there is also a belief "to spare these ‘poor old dears' from coming into a hospital for an operation when they could be managed at home with tamoxifen."
That attitude may soon change as new research finds just the opposite. Baum is chairman of and co-investigator in the Cancer Research Campaign (CRC) Breast Cancer Trial, which followed 455 women over age 70 with breast cancer. "The results were quite striking," says Baum, who presented the study at the American Society of Clinical Oncology meeting in San Francisco last May.
"There were significantly less deaths from cancer in women who had surgery and tamoxifen, as compared to women on tamoxifen alone. The bottom line with this study is that there's no reason based on chronological age alone to compromise on surgery, which is seen as an aggressive treatment," he says.
Participation in Clinical Trials
A study in the December 1999 issue of the The New England Journal of Medicine found too few older patients included in cancer clinical trials. The study looked at a national group of people enrolled in clinical trials with the Southwest Oncology Group (SWOG) Cohort, which is funded by the National Cancer Institute.
Although 63 percent of patients with cancer in the U.S. population are age 65 and older, only 25 percent of this age group was represented in SWOG trials. The study noted in contrast that minority groups of women and blacks were as equally represented in the trials as in the U.S. population.
The findings are important because clinical drug trials test for effective doses of drugs and harmful side effects. A drug working in an older body may act differently than in a younger body. An older person may not be able to break down and process cancer treatments as easily as someone younger. The side effects may be different if the functioning of a body organ, such as the kidney, liver, or bone marrow, is affected. Without information from clinical trials, doctors can only estimate how the treatment might work and what side effects to expect in older patients.
On the flip side, because health care providers may assume that older patients are more "frail," they may "treat down" (give a smaller drug dose) or not treat at all. "These decisions on how to treat are not based on science, but on assumptions and anecdotal evidence," says Boyle. "There are many older patients who can run circles around younger ones.
"The irony is that most of the information from cancer drug trials is based on young and middle-aged patients -- not the elderly, who make up the majority of cancer patients," adds Boyle.
But maybe not for long. In the last few years, the National Cancer Institute and National Institutes of Health have changed their criteria for clinical trials so that there is no longer an age cutoff. Enrollment is based not on age but on overall health status.
Other Barriers to Clinical Trials
Even if clinical trials are opened to older people, that alone will not solve the problem. Baum explains, "With the CRC Breast Cancer Trial, we thought it would be easy to recruit older women, but it was quite difficult and slow. Many of us met the formidable daughters who didn't want us doing ‘experiments' on their elderly mothers."
Boyle believes that ageism occurs not only in health care but also within families and patients themselves. "Even if some elderly patients are frail, they may be very competent. But family members may automatically think mom and dad are too old and can't make their own decisions." Boyle stresses the need for education for older patients and their families about new treatments and clinical trials.
Kathy Walsh-Burke, PhD, MSW, a professor of social work at Springfield College, Mass, and member of the Association of Oncology Social Work says, "Family members need to be aware that they may be limiting the care that their parent gets because of their own biases or lack of knowledge and understanding."
Other potential barriers include an extra new medication to take (as is required in many cancer clinical trials) or finding transportation to the trial site. Once a barrier, health insurance coverage, such as Medicare, will now pay for the costs of routine care during clinical trials. These include costs for items and services such as:
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room and board for a hospital stay
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a procedure needed to test a new care, such as having an operation to implant a new device
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treating side effects and complications of the new care
How to Talk Effectively With Your Doctor
The Oncology Nursing Society, the Association of Oncology Social Work, and the National Coalition for Cancer Survivorship (NCCS) have created a helpful resource for cancer patients called "The Cancer Survival Toolbox." Its special sections "Topics for Older Persons" and "Finding Ways to Pay for Care" are especially targeted to help older patients get the best care possible.
Walsh-Burke co-wrote the section for older persons because "oftentimes mature patients are treated somewhat differently and need to learn basic advocacy skills that other cancer patients use." She notes some key points:
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Learn Assertive Communication. This involves not only asking questions but "active listening," in which older patients let the provider know if they understand the information given to them. Often, medical terms are thrown at patients who may be hesitant to say "just a second, I didn't catch that" or "I don't know what you mean, can you explain?"
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Know Your Community Resources. The American Cancer Society and The Wellness Community are examples of national cancer advocacy groups that have local chapters. They offer support groups, counseling services, and referrals to local resources. Some communities provide transportation service to hospitals or medical escorts.
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