In the first three posts of this series, the theme has moved from my own arbitrary definition of communication to the critical role of the referring doctor in this two sided process (explanation and comprehensibility); and importantly these are essentially a prelude to a patient’s emotional comfort during the tortuous waiting period between cancer suspicion and the initial visit to the oncologist. It follows then that Part IV of this linear story should start with the recognition of the fact that the referral of a cancer patient to the appropriate specialist is a critical first step in a chain of events, because it represents the entry point to a particular cancer system and/or team. In a previous blog, I had alluded to this by making the point that because some patients are more needy than others, communicative and teaching skills are important considerations in selecting the lead cancer specialist. Bottom line, “who should I send this patient to for cancer management?” Once referred, the patient’s initial task (after agreeing, of course) is to be confident and remain open and trusting of the chosen team, which basically means adhering to the game plan that is developed and recommended. Further consultation and second opinions are useful and should be encouraged, but after some acquiescence to this concept, ruminations must cease - the patient and family best get on board with the team and the chosen strategy. I say this because once the process begins, things tend to occur quickly and sequentially, and while not impossible, it is a huge endeavor and frequently a compromise of standards, to change treatment teams in mid-stream. I’ll explain the ingredients as well as the importance of this statement.
For me, it’s intuitive that if confidence in the cancer team is not present at the outset, or if patient comprehension is lacking, the situation is fundamentally flawed, and as such, must be rethought. I’ll go even further by saying that patients that do not have absolute trust in their oncologist—whether they be surgical, radiation, or medical—should make other arrangements before the treatment starts. Conversely, if a physician senses a lack of trust in the patient or their family, the issue(s) should be promptly confronted and resolution sought. If this is not possible, the patient should seek treatment with another team. Importantly, the mere presence of doubt(s) is significant and must be promptly resolved, regardless of the reasons. Interpersonal chemistry is a complex and sometimes illogical brew, and human response to others is not always explainable. Commitment to cancer treatment is often the beginning of a long and arduous journey, and even though altering relationships because of instinctive feelings is potentially hurtful or embarrassing to some of those involved, bold confrontation is needed at this juncture. This is so because absent resolution of the issue(s), the seeds are sown for discontent and negative behavior. By the way, this works both ways – physician/patient and patient/physician. As I reflect on these matters, I am reminded of the words of George Eliot, “What loneliness is more lonely then distrust.”(1) Much like jealousy, distrust is erosive and wastes emotional energy.
It should be noted that once the responsibility for a patient’s care has been accepted, the physician does not have the legal or ethical privilege to merely refuse continued care, no matter the level of interpersonal dysfunction; instead, alternative arrangements must be made if the physician wants to sever the relationship. This whole issue is really a big deal! The reader might ask at this point, “What’s going on here? I thought this blog was about doctor – patient communication.” Allow me to refer you back to my previous blog (2) in which I discuss how the building of trust was intimately linked to good physician communicative skills.
Also, as I have previously mentioned, patients who are referred to an oncologist are often confused and ill informed. In discussing this, I made the point that this was often unavoidable and because of inconclusive information, the referring doctor is required to be vague. The oncologist, on the other hand, does not have the luxury of vagueness, because these are no longer days of paternalistic protection of the patient from the truth. With tact and empathy, the effective communicator can craft an explanation that emphasize the positive and, when possible, deemphasizes the negative.
To borrow again from a previous blog, no matter how intelligent, cancer patients retain but a portion of what they initially are told. With repetition, the retention percentage goes up in a linear way, but initially that portion is surprisingly small. Most observant physicians have witnessed this phenomenon. Many doctors try to counteract the tendency by writing explanatory letters to patients summarizing and reinforcing what was discussed. Unfortunately, however, some physicians don’t stress patient comprehension enough, the result being patient ignorance and confusion, both of which can complicate matters on numerous levels and thwart the maturation of the physician-patient relationship. If complications or even failure of the treatment strategy occurs, the confused or uninformed patient is more likely to feel betrayed and angry.
Obviously, some patients are intellectually more sophisticated than others, and the explanations must be tailored to their capability of comprehension. The ability to phrase language appropriately and to judge receptivity by observing countenance – reading body and facial language - are essential to a cancer physician’s communicative skills. People of limited intelligence can be overwhelmed with even a straightforward topic that has been presented with a rhetorical flourish—wordy in scientific phraseology and seemingly designed to impress, rather than explain. I have heard physicians give a detailed overview of the disease and a long-term strategy that can involve multiple cancer teams—surgical oncologists, radiation oncologists, medical oncologists, psycho-oncologists, dentists, nurses, nutritionists, social work, and others—all in one verbal dose delivered within the course of several minutes, and all done immediately after telling a patient that he/she has cancer. This is both insensitive and ineffective! Confirmation of the cancer diagnosis in itself is extraordinary. When combined with a complex game plan, there should be little wonder why some patients and families are overwhelmed. However achieved, the complexities of the conversation must be distilled, transmitted, and received in a comprehensible way. Readers of my writings have read previously and will probably read again, “it is the responsibility of the physician – not the patient, for promulgated information to be understood”.
There is a difference between the physician who does not understand how to communicate and the one who fails to communicate because of a lack of commitment to patient autonomy or who lacks concerned for the psychological impact that can result from the situation. While the latter of these two reasons lacks beneficence and as such is egregious, both situations are blatantly unacceptable in the medical climate of today. Before current standards were adopted, patients were told only what their doctor felt they should know. In part, this reflected an arrogance that automatically assumed the patient was incapable of understanding nuance. I choose to believe, on the other hand, that those doctors were no less humane or compassionate—they were then, as we are now, mostly generous, unselfish, and dedicated to the improvement of the human condition. Instead, I would like to think that their behavior reflected “the times” – times in which patients demanded little and doctors offered less in the way of explanation. Their conclusions, recommendations, and proclamations were virtually sacrosanct—not to be questioned. In that bygone era, patients had few rights, and only the most inquisitive and demanding of them challenged the physician’s explanations. In fairness, it should be noted that such behavior wasn’t limited to the medical profession. The same held true for other authority figures—the clergy, the legal community, educators, and to an extent, in the family unit. Dogma from the elite was the norm, and the Patient’s Bill of Rights that is posted in all medical facilities today was then but a fantasy in the minds of the most progressive patient advocates. The Informed Consent forms of today were also nonexistent, and in general, when doctors did explain, they were frequently misunderstood because real value had not been placed on patient comprehension. Thankfully, those standards are mostly remnants of the past; however, it is essential that we continue to encourage and welcome patient self-advocacy.
I had planned to conclude my discussion of communication related issues with this blog; however, the more I wrote, the more I felt was needed in the discussion of this immensely important topic. So I ask the readership to indulge me in the next blog and perhaps beyond. I’m open to feedback if this seems a bit much.
Roy B. Sessions, MD, FACS
(1) Middlemarch (London:Blackwood and Sons, 1874): George Eliot.
(2) Psychology Today, a blog Published Aug. 3rd, 2012; The Relationship of Trust to Hope in Cancer Patients by Roy B. Sessions