The 116 participants from the two continuing care retirement communities were well educated, most (83%) had college degrees; 76% were women, and 64% were age 80 and over. All were self-sufficient in basic activities of daily living. The majority reported good to excellent health, although 40% reported having 2 to 4 of the health conditions from Katz's modification of the Charlson co-morbidity measure for interviews [15
] (history of cardiovascular disease, congestive heart failure, diabetes, pneumonia, chronic obstructive lung disease or asthma, ulcer disease, renal disease, connective tissue disease, cirrhosis or liver damage, and cancer).
Thirty-nine percent of participants reported having had a previous, not current, diagnosis of cancer other than skin cancer. For those who had been diagnosed with cancer, 6 had colon cancer, 18 had breast cancer, and 13 had prostate cancer. Among those who had not been diagnosed with colon, breast, or prostate cancer, 98% reported having been screened for breast or prostate cancer in the last 5 years, 67% within the past year. Similarly, 96% were screened for colon cancer, 67% within the last year. Participants' age 85 and older had similar screening rates to those under age 85; 91% had been screened for colon cancer within the last 5 years, 52% within the last year and 97% had been screened for breast or prostate cancer, 83% within the last year.
Opportunities for individualized decision making for cancer screening
Forty-nine percent of participants reported that they had discussed one or more cancer screening tests with their physicians since they had turned 70 years of age; of these, most had discussed more than one screening test. Thirty-one percent of all participants reported discussing either breast and colon cancer screening or prostate and colon cancer screening. When asked about the content, 26% of all participants reported discussing how screening tests can sometimes give the wrong result (half of these were discussions about prostate cancer screening), and 1 out of 10 had been told that cancer screening may not benefit some adults. Thirteen percent overall, and 11% of those age 85 and older said they had been asked by their physicians if they wanted to keep getting tested for cancer.
Attitudes about individualized decision making
Although most participants had not discussed the possibility of stopping cancer screening with their physicians, when prompted 84% said they wanted to have these discussions (Table ). Despite this desire, almost half (48%) did not want to discuss their life expectancy, and 62% did not think their doctor's life expectancy estimate was important in making cancer screening decisions.
We compared the attitudes of participants' age 85 and older with those younger but found no differences among these groups, although the numbers were small. Similarly, the attitudes of those who had previously been diagnosed with cancer did not differ from those who had not had cancer for these questions.
Attitudes about continuing cancer screening later in life
Participants' responses to close-ended questions revealed that their attitudes about continued cancer screening were favorable (Table ). When considering themselves, most participants reported that they would continue screening throughout their lives; 43% would consider getting screened even if their doctors recommended against it. Only 13% thought that they would not live long enough to benefit from cancer screening tests. Eighty-one percent of participants believed that they would die of some other disease besides cancer, and 3 out of 4 believed that the benefit from cancer screening occurred immediately.
When considering others, most believed that those living in nursing homes (74%), those with Alzheimer's disease (66%), or those totally dependent on others (66%) should continue to get screened. Fifty-five percent believed that everyone should get colon cancer screening and 63% believed that everyone should get breast/prostate screening for as long as they live.
In subgroup analyses, the attitudes of participants aged 85 and over were similar to younger participants, as were those with a history of cancer compared to those without such a history. The exceptions were that participants 85 and over were more likely to believe that they would not live long enough to benefit from screening. And, those with cancer were more likely to consider screening even if their doctor recommended against it and were less likely to think that other health issues were more important than cancer screening.
In response to open-ended questions about whether participants had considered stopping screening, 23 participants reported that they had stopped cancer screening, but when asked if they had decided to stop screening entirely only 11 said they had made this decision. The others had stopped one test but continued other screening tests or interrupted their screening schedule but wanted to resume.
Responses to "What might make you stop cancer screening?"
To better understand the circumstances under which older adults would stop cancer screening, we asked "What might make you stop getting screened for cancer?"
Participants identified several conditions for which cancer screening may no longer be desirable. First, age was an important factor.
"I am ninety-two and I don't intend to prolong this if I don't have to"
"If I got to be really old, I think I would say to heck with it. Like in my nineties."
Deteriorating health, poor quality of life, or nearing death were also thought to be reasons to stop.
"If I were going to die anyhow, from my heart etc, I would want to stop cancer screening"
"If I were doing poorly in every other way, I might say why bother"
"I guess if I thought I were on death's door"
Concerns about screening tests were also cited as reasons to stop:
"If screening methods were proven unreliable or if screening dangers outweigh the possible benefits"
"If I felt the test was unreliable or if early detection did not have much of an effect."
Doctors' recommendations were also cited as important to participants decisions to continue or to stop screening:
"As far as I know I should continue, so unless my doctor says to stop I will continue, despite the pain."
"The doctors don't think the colonoscopy is that necessary at my age, and I do what the doctor says"