There’s so much to say about doctor/patient communication that even an overview of my thoughts is only possible in segments; therefore I’ll write several essays on this important subject. In my previous blog, I laid out general thoughts about what I feel actually defines communication. Specifically and most importantly, its basic ingredient is a two-way exchange – transmission and comprehension. Anything short of patient comprehension does not meet the gold standard. Put another way, without comprehension, the conversation is really only doctor’s monolog. Importantly, the ultimate responsibility for achieving this standard belongs to the doctor, rather than the patient – no matter what it takes. Bottom line, a physician should have the “people skills” and the concern to recognize when he/she is not making contact. Essential to communication is for the physician to be a good listener. Over time, I have become convinced that patients often have an instinctive sense of their own bodies, and on many occasions they feel something is wrong well before telltale symptoms or signs cause concern for their physician. While studying physical diagnosis in medical school, we were consistently admonished to listen to what your patient was saying; “they will often give you valuable information that you aren’t even seeking”, we were told. “Learn to read between the lines”. So when a patient says “something is wrong,” the wise doctor takes heed.
This admonition is relevant to most of medical practice, and is not limited to diagnosis. Such an example is seen during the referral process from one doctor to another, when a patient relates what has transpired with another physicians or even about other treatments; here, the cancer specialist must keep a non-judgmental and open mind. Its not uncommon for patients to come from a referring doctor confused and ill informed about their condition (in the case of the oncologist, a tumor) and its potential treatment. Initially, one is tempted to fault the referring doctor, but in truth, the explanation for this is often complicated. First, some doctors are simply not good teachers i.e. explainers, and even when time permits, the communication is ineffective. Another factor is that patient lack of understanding, misperceptions, and superstitions can result from fear of that most dreaded word in language—cancer. So even when the referring doctor does a good job of explaining, patients not infrequently fail to understand, and because of embarrassment or perhaps out of consideration for the doctor’s hectic schedule, they are reluctant to ask for further explanation. It is worth noting that medical information – especially that relating to cancer – is frequently not well retained by patients. Granted, the percentage of retention goes up each time the information is repeated, but in a busy primary care doctor’s office, one can’t count on repetition. The brain is an excellent filter for unpleasant information, and when added to the normal human tendency for denial, as well as those factors already mentioned – embarrassment, busy office, etc., – the stage is set for ignorance of the situation. Cancer patients often leave the primary physician with a referral slip in hand but confused about why they are referred in the first place.
It becomes the oncologist’s job, therefore, not only to diagnose the problem and to formulate the treatment plan, but also to establish and implement real communication; after all, they are the experts, and the referring doctor should not be faulted if the patient didn’t walk in the door well informed. In point of fact, in contemporary cancer care, primary physicians are rarely in charge – referral to an oncologist is the norm. The reader is referred back to my summer blog in which I discussed the contemporary cancer team approach.
Permit me to submit for your consideration the concept of “overall process”, rather than only referral and treatment. In reality, there are three phases to this: the initial cancer suspicion and the referral from the primary care doctor; the interval between the referral and the first visit to the oncologist; and the third phase during which the oncologist takes charge of the workup (evaluation and staging), discussions (consultations, tumor boards), treatment options, actual treatment, and the essential follow-up care. The reader justifiably might question the importance of phase two – the period between referral and the actual visit to the oncologist. In point of fact, it is significant because to a great extent, that interval affects the patient’s state of mind when they first encounter the cancer doctor. I’ll explain what I mean.
This rarely discussed interval between phase one and phase three of “the process” is the dreaded waiting period, during which extraneous influences can magnify anxiety and uncertainty. Obviously, the potentially gravity of the problem dictates one’s level of concern e.g. a lung or breast mass compared to a skin lesion – but I think it safe to say that with some exceptions, patients with a potential cancer are frightened, and their state of mind upon arrival to the oncologist is often influenced by various matters that pop up during the wait. Not surprisingly, the longer the wait, the more vulnerable the patient to counter-productive forces. This whole subject of waiting is so importance that in my book, The Cancer Experience: the Doctor, the Patient, the Journey, I devote a full chapter to it (1), and additionally, I wrote a more concise discussion for a fall 2014 Tidelines blog.
There is so much data readily available today and very little of it is or even should be proprietary. Welcome to the world of information technology. With that said, delving into the cancer literature without direction can be counterproductive, and is scary for many patients. So while it is generally better for a patient to be informed, the degree of that state is nebulous. Another extraneous factor entering the picture is that during this time, patients and their families often cloud an already emotional situation by talking to other patients or friends of patients who are quick to give unsolicited advice, much of which might be inaccurate and overly dramatized, and for many reasons, the recipient forgets to factor in the commonsense axiom that what applies to one patient does not necessarily apply to another. Even though most cancer patients intuitively know that it’s unwise to listen to nonmedical advisors – especially the self-appointed ones – in the real world of cancer hysteria, they often do just that. However, human nature and unchecked verbosity have probably trumped common sense for as long as people have interacted. Basically, such opinions should be avoided, and my advice is to keep one’s situation confined to a close support circle, and count on your oncologist for the details of the discussion. Once things are more defined, support groups and the related advice acquired from them is an entirely appropriate and helpful resource for cancer patients.
During Phase II, you might prepare yourself with questions that are based on reasonable literature search and your own common sense. Also, take a friend or family member with you to the oncologist’s office, and avoid inviting random comments from lay people before you get there.
Clearly, process expediency is the responsibility of the medical team, and the longer the wait, the more problematic the issues. Unnecessary delays and cumbersome scheduling mechanisms should be minimized, therefore. In the hectic day- to -day of medical practice, such delays are often not recognized for what they are – misery, uncertainty, and fear along the way. Insensitivity to casual delays of such tests results such as a biopsy or a mammogram is inhumane. By the way, the need for process expediency has little to do with cancer growth – this is only rarely an urgent matter – but is more a matter of psychological kindness.
Starting next blog, I will get into the interactions between oncologists and cancer patients, and I will stress the doctor’s communicative skill as the common denominator that most facilitates the process of diagnosis, evaluation, decision-making, and treatment.
Roy B. Sessions, MD, FACS
The Cancer Experience: the doctor, the patient, the journey, by Roy B. Sessions, MD, Chapter 18