Advanced Chronic Disease Patients Want Good Reasons for Therapy

NEW HAVEN, Conn., Aug. 9 -- Older patients with advanced chronic diseases may reject medical or surgical interventions unless clinicians provide a cogent rationale for them.

In a study of 226 community-dwelling adults with advanced cancer, chronic obstructive pulmonary disease, or congestive heart failure, 16% reported refusing at least one physician-recommended treatment, reported Marc D. Rothman, M.D., of Yale and the Connecticut VA Health System, and colleagues.

The most common reason for refusing treatment was a fear of side effects, the authors wrote in the July issue of the Journal of General Internal Medicine. Those significantly more likely to turn down medical or surgical therapy either wanted more prognostic data or thought that they had less than two years of life remaining.

"This frequency of refusal suggests that physicians may be recommending treatments to these patients that pose unacceptable burdens or that fail to meet patients' goals," the authors wrote. "These patients may require a broader range of treatment alternatives, so that they can select the option that best meets their goals of care."

In the observational cohort study, patients were interviewed in their homes by trained research staffers at least every four months for up to two years, and patients were also called by phone each month. They were asked about changes in their health status, defined as a new disability in a basic activity of daily living, hospitalizations of seven or more days or a hospitalization requiring a discharge to a nursing home, sub-acute facility, or rehabilitation facility, or the introduction of hospice services.

At baseline patients were asked, "Have there been any treatments that your doctor recommended for you that you decided not to have?" At all follow-up interviews the patients were asked, "Has there been any treatment that your doctor recommended that you decided not to have since the last interview?"

The patients were also asked to describe the category of refused intervention, and were prevented with options such as surgery, dialysis, cardiac catheterization, chemotherapy, transplantation, and other procedures.

The authors divided the patients into retrospective and prospective cohorts, with patients in the retrospective cohort being those who reported at the first interview that they had refused an intervention and survived long enough for follow-up, and the prospective cohort including all patients who refused treatment regardless of outcome.

For each treatment refused, patients were offered a list of possible reasons why, with patients allowed to choose multiple answers for each refusal.

The authors found that 36 of the 226 patients (16%) reported refusing one or more physician-recommended medical or surgical treatments, with cardiac catheterization the most often refused procedure, followed by surgery. In all the rate of refusal of catheterization among patients in the retrospective cohort was 13%, and in the prospective cohort it was 12.5% The rates of refusal of surgery were 10.9% and 13.3% for the cohorts, respectively.

The most common reason for refusal was fear of side effects, cited by 41%, followed by "thought the treatment would not work"(19%), and "did not want to do anything to prolong my life"(12%). In addition, 7% said they thought they would do better with a different treatment, and 12% had "some other reason."

Patients who wanted more prognostic information than they had been provided were significantly more likely to refuse treatment than patients who felt themselves well-enough informed (P=0.02). Patients who estimated their longevity to be two years or shorter were also significantly more likely to turn down an intervention (P=0.02).

The patients who turned down a procedure were twice as likely to die as those who acquiesced (hazard ratio 1.98, 95% confidence interval, 1.02-3.86).

"The frequently cited reasons for treatment refusal in this study expands on prior work showing that fear of side effects plays a major role in treatment decision making for prescription medications," the authors wrote. "Over 17% of Medicare recipients reported skipping doses or stopping medications outright because of side effects, and more than 15% of patients with lupus nephritis stated they would prefer a less efficacious medical regimen to avoid the toxicity associated with cyclophosphamide."

The findings suggest that patients are strongly influenced by their own preconceptions of side effects, even when physicians think an intervention offers a clinical benefit, and support other studies showing that patients base decisions about their treatment on a wide range of personal experiences, the authors commented.

They noted that their study was a secondary analysis and was not powered to examine the effects of treatment refusal on outcomes. In addition, the cohort was largely male and white, which could limit the ability to generalize results, and there could have been recall bias because the study relied on patient reports of treatment refusal. The authors also did not have data on what treatment patients were offered, if any, when they refused an intervention.