This past Sunday, May 5, 2013, an article appeared in the Review section of the New York Times written by a resident in internal medicine..
The title is "The Cancer of Optimism." I was horrified and very agitated by the opinions expressed. These ideas have repeatedly been espoused by other author/doctors in several other articles during the past couple of years. I am very concerned that they will come into the mainstream. If they do they will harm the efforts we are trying to encourage in a forum such as this. We are taking upon ourselves the responsibility to find out as much as possible about our disease, then make our own choices about courses of action. We all are also fueled by hope, hope that the medical predictions might be wrong, that we might secure for ourselves a few more days or weeks of life, and that by sharing our knowledge and by serving in clinical trials we may be of help to others
The article assumes that the patient knows only what the doctor tells him, and that it is up to the doctor to direct the patient into a course of action or non-action. It considers hope on the part of the patient in the face of a terminal disease to be a detriment, not to be encouraged, and it makes no mention whatsoever of clinical trials.
This is the letter I wrote to Dr. Warriach:
Dr. Warriach, to give you the benefit of the doubt, I don't think you know how much this article is insidiously demeaning to patients.
You assume that physicians have a lock on "the truth," that only they are privy to medical information pertinent to the patient. Thankfully patients have found the key, in the form of the internet, which not only allows them to verify the doctor's "truth," but to learn many other truths that the doctor has failed to convey. The medical world no longer is able to keep secrets from patients, nor should they.
The doctor's obligation is not only to convey the situation as knowledgeably as he can, but to share all the options available, along with their risks and benefits. It is not his job to choose a course of action for the patient, or to impose his values upon the patient's choice. You apparently assume that what course to take is the physician's choice; it is most certainly the patient's choice. What an arrogant assumption.
I find it strange that nowhere in the article is the concept of clinical trials. These represent both hope for the patient, as well as an opportunity for him to make a contribution to knowledge, to give something to those who go after him, offering him a sense of usefulness, rather than completely focusing on himself.
This common omission of suggesting the option of clinical trials to patients is astounding in light of the desperation of researchers to find patients for their trials.
Hope can and does co-exist with knowledge of the "truth," one involves the intellect, the other emotions. A person can know the sad scientific truth of his prognosis, and also have hope that it may not be accurate. To extinguish that flicker of hope is cruel. It is that very hope that may give the patient the wherewithal to live until his grandson's bar mitzvah
Though I am considered terminal, I have survived 10 years past a 6-month prognosis by having hope that enabled me to join many clinical trials. Despite the fact that my prognosis sticks to me, and most certainly always will, I feel well and am looking forward to my grandson's bar-mitzvah in a few months.
Thank you for taking the time to listen,
Esther Damaser, Ph.D.
Yellow Springs, OH