Many cancer patients do not receive complete information from their doctors about their disease, and fully 71.4 percent are not informed about treatments not covered by the national health insurance plan, which violates the law, a new survey has found.
The survey, conducted last month by the Patients Rights Association, questioned 98 cancer patients. Of these, 34.7 percent defined the information they received from their doctors as insufficient, 27.8 percent said it was incomplete, and 21.4 percent said it was unclear.
In addition, 71.4 percent said they were not informed of alternative treatments that aren't covered by the national health insurance plan, which is colloquially known in Israel as the "health basket." This violates the 1996 Patients Rights Act, which requires doctors to give patients complete information about all possible treatments, including those not covered by the health basket or not offered by the hospital where the patient is being treated.
For instance, while 77.3 percent of prostate cancer patients accepted their doctors' recommendation to undergo an operation to remove the cancer, fully 38.6 percent said they were never informed of the possibility of having the operation done laproscopically, which involves a much smaller incision.
Among patients with colorectal cancer, 31.5 percent said their doctors proposed only one course of treatment, while just 13 percent were informed about the KRAS test, which identifies genetic mutations that greatly affect how patients respond to certain types of drug treatments. Such treatments can be highly effective for people with the right mutations, but the drugs in question aren't included in the health basket, and cost tens of thousands of shekels a month.
"Information is one of the most important parameters in enabling a patient to cope successfully with his disease," said Shmuel Ben Yaakov, a member of the Patient Rights Association's board. "The doctor is responsible for providing the patient and his family with complete, unfiltered information, to enable him to be a full partner in decisions about his method of treatment. There are quite a few situations in which complete information manages to improve or even save the patient's life."
He added that the survey probably understates the number of patients who don't get complete information, because it was conducted over the Internet, and thus excluded patients who can't afford an Internet connection. These patients are even more likely not to get complete information from their doctors.
But association officials stressed that doctors' failure to give complete information isn't necessarily malicious: Doctors are overworked; they are often under pressure from the health maintenance organization or hospital that employs them to favor certain treatments; and they frequently don't want to impose an economic burden on the patient by suggesting treatments not included in the health basket.
Another problem is lack of information about the side effects or failure rates of various treatments. The association recently asked the Health Ministry to promulgate clear regulations requiring HMOs to inform patients about both issues.
"Many doctors have patients sign informed consent forms, sometimes shortly before a treatment is given, but don't explain all the treatment alternatives, including their risks and chances [of success]," said Ben Yaakov.
The association noted that full information is especially important for cancer patients, because there are so many different treatment options, including radiation, chemotherapy and surgery.
Lenny Hirsch, 71, of Katzir was diagnosed 16 years ago with prostate cancer, and has since set up a support group for prostate patients. He is very aware of the fact that patients are often not informed of different treatment options, or of the possible side effects of treatments. But he also stressed that this cannot be the doctor's responsibility alone.
"The patient bears a heavy responsibility in obtaining information about his disease, and especially a serious disease like cancer," he said. "The patient should go to different specialists and actively seek information from a number of sources - organizations, other patients, colleagues and the Internet."
Moreover, information doesn't stay the same from year to year: For instance, new treatments are added to the health basket every year.
The 18-member committee that will decide which drugs and technologies to add in 2012 plans to hold marathon meetings on the subject next Tuesday and Wednesday. It has NIS 300 million to allocate, but must choose among some 60 proposed treatments that cost almost NIS 1 billion.
The hottest battles are expected to be over new drug treatments for colorectal cancer and multiple sclerosis, as several drugmakers are vying to get their drugs included.
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