The two most common complaints with all cancer patients is fear of the unknown and failure of communication with their doctor. These are both absolutely normal, and no one is to blame. The doctor doesn't know what the patient is afraid of or wants to know, and the patient, having never been there, doesn't know what to ask. Furthermore, often the patient does not hear what the doctor says.
Since this book is being written for you, there are two specific things you can do to improve communications between you and your physician. First, whenever you are with your doctor, not only should you have a friend or family member present to help ask the questions and understand the answers, but you should have a tape recorder so that you can play it back at a later time when you can concentrate on what was said and not be under stress. No physician should object to a tape recorder because that is like saying he is not honest and would not want to admit what he said. If the physician is concerned with a potential lawsuit, he may want to have his own recorder operating simultaneously to avoid the possibility of an edited tape.
Secondly, you can nicely and politely but firmly insist that your doctor spend sufficient time with you to thoroughly answer all your questions and explain what may lie ahead of you between now and the time of your next visit. For this purpose, it is best that you have all your questions written out so that you can hand them to your doctor. This will save your rambling, repeating and omitting what you want to know. It will also let your doctor answer them all in a logical sequence in the time he has.
Important to recovery is your doctor's way of communicating with you about your disease. Many physicians now believe that if they instill a sense of confidence and hope in their patients, these patients will do better. A physician can easily communicate negativity to a patient by what he says, tone of voice or even line of sight. When a doctor dejectedly says, "There's not much more that we can do," you're likely to feel helpless. If you are told that despite the seriousness of your illness, there are treatments for it and one of them might improve your condition, the physician can still remain honest without dashing your spirits.
An article in the August 29, 1985 issue of "The New England Journal of Medicine" states that "According to surveys, at least 70% of doctors now believe in telling people the truth about their cancers, as compared with 82% who practiced oppositely only 24 years ago."
It further advises physicians, "To begin, if you take time to talk with people, not at them, your story will be heard...One session may not be enough. Doctors who wish to retain more than 5% of a lecture's content must go over its material more than once - preferably soon, and again after a day - so why not patients?... You shouldn't tell more than you know. Admissions of ignorance confirm your knowledge. A patient or family member may ask you to peer into the future... you may wish to guess, extrapolate from what has gone on or invoke prior experience.. resist if you can.
"Matter-of-factness is crucial. Pity and sympathy are distancing; they separate the giver from the receiver by emphasizing the differences in their lots. People in desparate trouble need sharing instead, which they get from the acknowledgment in your words of what they are up against, the promise in your attentiveness that you'll be there, and the declaration in your attitude that you and they are fellow wayfarers...
"Most important, keep people in charge. To usurp the role is tempting for either a physician or family member, but it will be one of a physician's less noble acts.
"The alternative to the approach of sharing the burden while promoting independence is to decide for oneself or with the family what to do. It often means complicated lying. Sometimes it means deciding to forgo treatment for someone entitled to make that decision. Worse, it means arrogating to oneself or a family member the decision about how someone will face death, and in the process making him or her subordinate and childlike. And it means saying things that inevitably will be contradicted by events, bringing an increasing portion of isolation and mistrust to someone who, more and more, will need their opposites. It must be especially hard to decline while everyone, including oneself, pretends it's not happening, or that it is for reasons too dreadful to be discussed.
"I would make four points. The first is that we doctors are not wise enough to tell in advance who should not be told. We sense who would be difficult to tell, but that is a different matter, having as much to do with ourselves as our patients.
"The second point is that shielding is ultimately impossible and that the price of its temporary achievement is an enduring sense of betrayal. Once lied to, even supposedly in their own interest, people will not trust fully again. And the lie is inevitably discovered.
"The third is that even if we knew whom to shield and could carry it off, we still should not. Not only is lying wrong in an abstract sense, though one may argue over possible exceptions, but in this instance it is especially so.
"Finally, we physicians need to look further into ourselves, and to ask, when we falter at telling bad news or manage its consequences badly, how often it is a blinking at our own mortality, a reluctance to admit the failure of what we have done for prevention or cure, or an unworthy desire to control...We should refer those patients...whose symptoms or diseases are beyond our competence."
A "Bill of Rights" for cancer patients and their physicians may help pave the way for an improved patient-oncologist relationship. It was prepared for the Wellness Community in cooperation with a group of practicing oncologists and is advocated by the UCLA Cancer Center. If you have a problem communicating with your oncologist, you might show this to him and ask him to abide by it, providing you agree to do your share.
"As your physician I will make every effort to:
I hope that you as the patient will make every effort to:
The cancer patient, as well as the entire family, should attempt to live a life as close to normal as you feel comfortable. To allow for no changes is unrealistic because it denies the stress of living with a life- threatening disease. But the opposite, to curl up and quit enjoying life, is equally bad. Even with the toughest treatments, there is generally plenty of time for relaxation and pleasure. And each family member should not feel so indispensible that they cannot take time off for their own needs. As a result, they will be able to be of more benefit to the patient.
A woman was diagnosed with lung cancer. In spite of having a very devoted husband, extremely supportive children, a well-qualified medical oncologist and radiation oncologist, and no possible financial problems, she made no personal efforts to fight the disease. Sure, she took the prescribed radiation. But she never gave up smoking! She would not read anything about her problem or try to help herself. Then, as the disease worsened, she finally confided in her son why she acted the way she did. She said she was told after her initial chest X-ray by the diagnostic radiologist that she obviously had lung cancer. She should do whatever she wanted for whatever time she had left. She should not listen to anyone who wanted to help her because there was nothing that really would help!
Maybe that is what the radiologist said and maybe it isn't. It is what the patient thought she heard! In World War II there was a saying, "Loose talk costs lives." The same words are even more applicable to cancer. There is much evidence - scientific, clinical and anecdotal - showing that a patient's expectations have a real bearing on the effectiveness of treatments. A health professional,doctor, nurse or technician has no right to make a statement from ignorance or one that can be misunderstood by the patient.