Let’s review some of what we’ve discussed in previous blogs so as to get the most out of today’s efforts. I have been arbitrary in stating that the end point of real communication is patient comprehension; anything less is sub-standard. The bottom line as it pertains to patients is “what has been achieved if a patient doesn’t understand what has been explained?” To take this one step further, the confusion that results from the lack of comprehension is often counter-productive. I have further written that achieving this state of understanding is the responsibility of the doctor, to whom it should be clear that subsequent experiences are psychologically more complicated and frightening for an uninformed patient. The cancer experience — the suspicion, the confirmation, the workup, the treatment, and the follow-up—is a continuum, or journey, if you will, that involves a sustained commitment by a number of individuals on the cancer team, and the better the communication between this group and the patient the better. Not all cancer teams are attuned to this concept, but at a minimum, the leader of the team i.e. the oncologist(s) should be firmly aware of and committed to it.
Communication, which by definition includes patient comprehension, really starts with the referring doctor. Cancer patients are generally referred to oncologists – whether they are surgical, radiation, or medical – from other health care professionals, such as primary care, dentist, gynecologists, endocrinologists, pulmonologists, gastroenterologists, otolaryngologists, and others. Not uncommonly, at the time of the initial visit with the oncologist, the patient is confused or even unclear as to whether they actually have a malignancy. I have seen patients who thought they had cancer, even though proof had not yet been established. The memory is fickle, and despite the tenacity of real facts, the brain tends to filter out scary information or even fabricates alternatives. The scientific proof may be inadequate to defend this, but most observant physicians have witnessed it happen. Although the patient confusion now being discussed is often an example of this phenomenon, it can also be the result of inadequate communication. In fairness to referral physicians, however, it is difficult to partially enter this zone of patient fear without details. There is often suspicion but no proof, and in such a case the referring doctor may have told the patient, “You have a problem,” or “You have a tumor,” or “You have a growth.” The implications of this language are clear to some patients but not to others. This type of phraseology does not necessarily reflect a lack of the doctor’s communicative ability, however; let me explain by examining the dilemma. One must never be casual with the cancer word, and in the absence of proof – no matter how strong the suspicion – many doctors are wise to avoid speculation. Also, it is an understandable human trait to avoid delivering bad news, and unless cornered by a demanding patient, doctors tend to skirt around the hardcore questions and answers. With most patients, the use of the slightly evasive terms, i.e. other than the cancer word, is enough. However, if arrangements cannot be made to promptly see an oncologist, avoiding more details can become problematic. I don’t know the average waiting time to see an oncologist, but I do believe that it should be days, rather than weeks. In my opinion, it is inhumane to prolong this “dreaded waiting period” – as I labeled it in my last blog. The longer the wait, the more problematic the issues! Patients tend to imagine the worst, and no matter how brave or objective they are, that constant companionship of cancer related fear becomes a dominant force. So the communicative methods of the referral doctor are important, but are only effective for a limited period, and if it’s prolonged, patients will often push for more. The doctor should avoid this tricky conversation if possible. If the patient asks directly, “Could it be malignant?” the physician should be honest with a simple “yes”—after all, why else would the patient be referred to a cancer specialist. This is not a simple issue. Even though a patient’s anxiety level may be at its zenith, many physicians wisely choose not to speculate on likelihood or other specifics. On the other hand it must always be kept in mind that once the cancer word is mentioned, fear takes hold and the patient can become relentless in asking questions that the referring physician is really unable to answer. It’s a mixed bag – many patients will not ask for speculation or predictions out of fear of hearing dreaded news; others will. In an effort to avoid this trap, referring physicians are often intentionally vague. This is not an incorrect or unethical technique; on the contrary it actually gives the oncologist latitude to develop the discussion in a more positive and factually based manner.
It is tempting for a referring doctor to offer comfort to a patient, but such an attempt can introduce unrealistic expectations. That said, there are certain circumstances in which it is appropriate for this physician to offer general data that is favorable and might give a patient cause for hope. For instance, approximately 80 percent of “incidentally” discovered breast masses in women turn out to be nonmalignant. Similar optimism is possible in a patient with a parotid gland (salivary) tumor, in which about 75 percent are benign. Quoting such generic data when sending the patient to an oncologist is different from specifically making predictions about that particular patient’s mass. In the case of a potentially ominous tumor—a pancreas tumor for instance—no real value is gained by speculating on the dismal statistics associated with this group of malignancies. As it pertains to cancer generally, the probability of cure is directly stage related, and in the process of quoting overall numbers, the bad is included with the good. That is to say, early stage is more optimistic than more advanced stage. Better the patient be properly worked up and staged and the prognosis developed based on the specific tumor burden. Said another way, in most cancers, early is better and advanced is worse; hence, the contemporary emphasis on prevention and early diagnosis, and the wise referring doctor should know when to emphasize the positive, and de-emphasize the negative part of the calculus.
The reasons to select a particular oncologist for a particular patient vary, depending on circumstances. The most obvious requirements are skill and expertise in the particular problem – that’s a given. This blog is about communication, however, and I ask the reader to bear with me in not dwelling on the obvious. What is not so obvious and what must not be overlooked is the fact that different patients have different emotional needs. Some require less support and less explanation, while others are riddled with insecurity, and are insatiable in their need for hands on contact and psychological management, including constant reassertion of previously given explanations and goals. This can be a very needy group of patients, and given the choice, the referring doctor should select an oncologist who has the capacity and the emotional depth to address their needs. Some physicians are emotionally barren, and incapable of producing what is necessary for all of this. Others, however, for complex and sometimes self-protective reasons are unable to jump into the emotional pool even though the ingredients are within their psyche. These physicians are unable to establish the important connection with such a patient. In my book, The Cancer Experience: the doctor, the patient, the journey, I have devoted an entire chapter to the emotional commitment of doctors to patients, as it pertains to the overall equation (1). This can change as a physician matures – from a seemingly cool and distant demeanor in youth to that with compassion. Wisdom and maturation often do wonders.
Another important quality needed by a cancer physician is the ability to educate. Some doctors are poor communicators, and this limits their teaching skills. By now, the reader probably recognizes that I place a high value on patient education. A physician’s ability to explain complex issues and teach patient and family is important generally, but it is critical in the cancer population. Remember, fear and dread are constant companions of most cancer patients, and an abrupt or unsympathetic doctor who is not willing to sit, listen, teach, explain and re-explain, comfort and encourage is antithetical to the ideal strategy. I should include one last undesirable trait; even though arrogance is never admirable, it is especially offensive in someone in whom so much power is entrusted as that bestowed on an oncologist. The stakes are enormous. When present, unless there is a compelling reason to overlook this aggravating trait, an alternative expert should be sought.
In my next blog, I’ll finally get to the issues – communicative mainly – that directly involve the oncologist and their overall approach in dealing with this psychologically fragile patient population. To point out the obvious, effective communication is basic to all of this.
- The Cancer Experience: the doctor, the patient, the Journey; by Sessions, Roy B.; Chapter 4
Roy B. Sessions, MD, FACS
Seabrook Island, SC