THE NEED TO KNOW

Studies have repeatedly shown that patients with cancer feel they are not given nearly enough information by their physicians. Patients who feel under-informed are more likely to suffer from anxiety and depression, and frequently have measurably reduced well-being.

Most patients want to know as much as possible about their disease, regardless of whether the news is good or bad. In one large study carried out in the UK, for example, less than 2 percent of patients expressed a preference not to be told that they had cancer, and over 90 percent of participants stated a strong desire for full information about all available treatments and how they work, as well as a need to be told about all possible side effects (Jefford 2002).

Historically, the medical profession has shown considerable reluctance to involve patients fully in the decision making process. During the 1960s, for example, over 90 percent of US physicians indicated that they felt a patient with cancer should definitely not be told the nature of his or her disease. Although this secretive and strongly paternalistic attitude has now largely dissipated - more than 97 percent of physicians would now unhesitatingly reveal a diagnosis of cancer - clinicians still often greatly underestimate the amount and type of treatment information that their patients need to be given.

The constraints of today's managed care system certainly do not help. While many doctors would almost certainly like to spend more time with patients to explain things in more depth and answer questions more fully, the constraints imposed by the increasingly prevalent managed care system conspire to make the allocated time per visit ever shorter.

The net result is that patients feel unable to make truly informed decisions. Robbed of the opportunity to discuss their medical needs thoroughly with their physicians, people often turn to the Internet for answers. Certainly, the Internet has unlocked the medical libraries and made vast quantities of formerly unavailable medical literature accessible to everyone. But it has also made available an abundance of unreliable information, often couched in pseudo-scientific language, whose concealed purpose is to sell the unwary a product or service that is essentially worthless. Without the necessary background in the life sciences, it can be extremely hard to discern the fallacies in the sales talk or make sense of journal articles and technical literature.

AN OPEN LETTER TO FARRAH FAWCETT

On my own behalf, as well as that of my coworkers, and the readers of our weekly online newsletter, I want to wish you success in pursuing innovative cancer treatments in Germany. I applaud your courage in seeking an approach that hopefully will be less toxic and more effective than the treatments you have so far been offered in the US.

With this open letter, I also hope to counter some of the negative comments that have been made in the media about your treatment choices. Some of the derogatory comments about "the murky world of overseas clinics" have come from the tabloids - no surprise there. As your spokesperson told People magazine, "It is now clear that the tabloids are as invasive and malignant as cancer." I wish there were some way to shield you from their abusive attacks.

Far more surprising have been highly critical comments from individuals associated with major US cancer institutions. Isn't it ironic that before your diagnosis you served as a celebrity spokesperson for the American Cancer Society? Now, some people associated with ACS and similar organizations have forgotten this former service and, in effect, have washed their hands of you.

Interviewed by the Associated Press about your case, Barrie Cassileth, PhD, is quoted as saying, "I would [tell a patient considering alternative treatment] that they are signing their own death certificate. I would say they are wasting time they could otherwise spend happier and with their families." Dr. Cassileth is chief of the Integrative Medicine Department at the Memorial Sloan-Kettering Cancer Center, New York and has been prominently associated with your former organization, the ACS.

I find such statements both highly inappropriate and contradictory. Saying that people are "signing their own death certificate" by pursuing innovative cancer treatments outside the US implies that they would not be signing their death certificate had they only stayed in the US for treatment. While I do not presume to know the details of your case, I assume that you were fully informed by your American oncologists of the treatment options for your cancer, and found them unacceptable.

I am sure you did not make the decision to seek treatment in Germany on a whim, but after due deliberation of all your options. Dr. Cassileth's melodramatic statement implies that you are wasting your time by doing so and that you could instead spend "happier" time with your family. Not everyone will choose to, as it were, wait out the clock. I thoroughly understand your desire to seek more effective treatments, including those available abroad. This is of course a very personal choice, which is determined in part by one's resources and fighting spirit. But the fact that some people choose to seek out other possibilities abroad rather than give up hope at home is not a sign of irrationality.

Medicine develops unevenly and is still partly determined by national characteristics. (For confirmation, see Lynne Payer's classic Medicine and Culture.) Consequently, there are treatments available in Europe that are not yet available here, and vice versa. Dr. Cassileth seems to think that all German cancer clinics are a monolith and that all their techniques are the same and equally ineffective. But the topic of German innovative medical treatments is a huge one. According to one German Web site (www.klinik.de) there are presently 2,200 private clinics in Germany, containing 500,000 beds and treating 17.5 million patients annually. Many of these are cancer patients. These clinics were not set up to treat Americans, but primarily to serve the interests of the indigenous population. Germans in general (including many of their doctors) have a more positive attitude towards natural medicine than do their counterparts in America. In my experience, the German clinics are generally well run and are in full compliance with both local laws and international standards of ethical patient care.

Germany has long been a world leader in cancer research and treatment. German biologists pioneered almost every step in understanding the nature of this disease. Despite the terrible setbacks of World Wars I and II, German doctors continue to be well trained and well informed on all aspects of cancer care. In the use of complementary medicine they are without peer in the West. German doctors have either pioneered or expanded the use of mistletoe, enzymes, thymic peptides, immunotherapy, hyperthermia, and a host of other innovative techniques. These methods are sometimes employed alongside surgery, radiation and chemotherapy, when these are deemed necessary.

A glance at this year's program of the 41st Medizinische Woche (Medicine Week), held October 27-November 1, in Baden-Baden, reveals a panoply of treatment options that are unknown by most American oncologists. Recently I had the honor of co-editing a medical textbook on the German approach to integrative cancer therapy with Josef Beuth, MD, professor of complementary medicine at the University of Cologne. Our volume, Complementary Oncology (Thieme) gives some idea of the range of these treatments and the depth of their scientific evaluation including, in some instances, through the use of randomized controlled trials.

In conclusion, Ms Fawcett, I hardly think you are wasting your time, much less signing your own death certificate, by going abroad for treatment. You have made a rational decision under extremely difficult circumstances, and that decision deserves the utmost respect, not a flippant dismissal of your survival prospects. All people of good will wish you the best of luck in your search for effective treatments.

--Ralph W. Moss, Ph.D.

References:

Jefford M, Tattersall MH. Informing and involving cancer patients in their own care. Lancet Oncology 2002;3(10):629-37.