Date: July 18, 2004
by David Arenson
Editor’s Note: Much to his surprise, David Arenson was diagnosed with CLL in September 2003. By the end of November, he had fired two oncologists in quick succession. David underwent Rituxan monotherapy in early 2004. A former newspaper reporter and editor, he and his wife, Marilyn Werden, are the co-authors of two books. They are active in the CLL patient community.
The opinions expressed here are those of the author(s). CLL Topics does not necessarily share or endorse these opinions.
I have a three-year-old niece, and when she stubs her toe or scratches her knee, she runs to her mother and says, “Mommy, make it better!”
As a CLL patient, I know the feeling. After I was diagnosed, I just wanted someone to make it better, and I suspect this emotion is common among new patients. There is a basic human tendency in times of great stress – such as dealing with a diagnosis that is shocking, strange, and overwhelming – to revert to a childlike state, to hope that mommy or daddy will fix things and make them OK. This results, in part, from the feeling of being helpless and dependent – unable to control our strange, frightening condition and grateful to those who seem to have the power to help. Often, we put doctors in the parental role and place a certain trust in them that goes beyond what is reasonable or prudent.
In certain tribal cultures, people invest the shaman or healer with religious authority. We may live in a world of rocket ships and microchips, but we are not so far removed from those instincts. To some of us, it may seem as if doctors have been initiated into the mysteries of life and death: they wear special white garments, the color of purity. They speak a baffling language, medicalese, which implies a knowledge well beyond that of the average mortal. They charge an incredible amount of money, so they must be worth a great deal. They offer us salvation, and sometimes say so.
But, alas, doctors are as human as we are. And being such, they cannot live up to our unreasonable, sometimes mystical expectations. Indeed, it is essential that we patients get past a childlike perspective and come to understand what doctors can and cannot do.
So what can a rational, reasonable person expect of a doctor? Well, for starters, you might assume that the doctor knows the latest science, is familiar with current diagnostic and prognostic procedures, and understands the pros and cons of the latest treatments. You might also assume that the doctor will be able to make nuanced connections among these things; will listen to your questions, concerns, and ideas with an open mind; and will respond thoroughly, respectfully, and honestly.
There are doctors who meet these standards. But it is the second rude shock many patients face – after the diagnosis itself – that this is all too often not the case. From what I’ve heard and read, a great many CLL patients have felt compelled to fire at least one oncologist. And I can tell you from personal experience that it is not easy to change horses in the middle of a raging bloodstream. Dealing with your new diagnosis is hard enough; trying to figure out if your doctor knows what he or she is talking about can be a real mind-blower.
Recently, there was a discussion of the art and science of medicine on one of the Internet CLL groups. The question came up as to whether the patient really needed to know the science or whether the patient should instead rely on the physician’s art. There was some sentiment that the latter ought to be the case, that ultimately we should defer to the people in the white coats because, quite simply, they know better.
But, if nothing else, the track record of many doctors when it comes to CLL should raise a red flag or two (or perhaps as many as used to appear in Red Square during celebrations of Stalin’s birthday). After all, the consequences of ignorance or inattention are so much more important in medicine than they are in most professions. And the world of CLL is changing so rapidly, and is growing so complex, that many doctors are unable or unwilling to keep up with it. For these reasons, it may be unwise to leave either the art or science of medicine to doctors alone.
To begin with, I think it is a mistake to assume that most physicians are artful. As is true with auto mechanics, a very good one is hard to find. If you think about it, the number of people in any profession who have made an art of their work is very small. Doctors run the gamut from gifted to workmanlike to questionable to incompetent. (Old med school joke: Q: “What do you call the person who graduates last in their class in medical school?” A: “Doctor.”) Having seen a few doctors in my time, and knowing other patients with similar experiences, I think we can identify three qualities that make for a good doctor. And, ironically, they are the same three qualities that make for a good patient.
The first quality is a thorough understanding of science, which is essential to the art of medicine. You cannot be a great painter if you do not know how to draw, and there are many oncologists out there who are simply not up to speed when it comes to the science of CLL. Some of them, to continue the art analogy, appear to be using the CLL coloring book. How many of us have been told we have the “good cancer” (talk about an oxymoron) and that few people ever die of CLL? How many of us have been presented with outdated or even dangerous therapy choices in busy offices where CLL ranks 17th on the list of cancers treated? How many of us have encountered doctors who dismiss the latest diagnostic test or treatment protocol because they are not adequately familiar with it?
It is exactly because so many of us CLL patients initially encountered ignorant doctors that we began to take it upon ourselves to learn about the science of our disease. Thanks to websites such as CLL Topics, we are able to educate ourselves about what CLL is, how it works, and how it can be treated. If most of us cannot expect to be conversant with every last molecular detail, we can at least become thoroughly familiar with the general concepts and important considerations. Indeed, you will likely find a more thoughtful analysis of CLL issues by spending an evening here than you would in a dozen visits with most doctors.
This effort to learn is not easy. It requires time, concentration, and a certain amount of self-discipline, as there are no structured courses to attend. The material may seem daunting or strange at first. And sometimes we must deal with potentially scary information of the sort that makes us want to run to mommy. But if we expect the best from our doctors, should we also not expect the best – no matter how hard it is sometimes – from ourselves?
Frankly, if a patient has the attitude that “I don’t have the time to learn” or “I don’t want to know” or “I'm only the patient and they're the doctor so I should just go along with what they tell me,” then you might as well pull out a gun and start playing Russian Roulette.
There are those patients who will say, “Maybe that’s true in most cases, but I know I’m safe in the hands of the experts,” such as doctors in the CLL Research Consortium. I am not taking away from the important work done by our leading researchers, but there is no guarantee that a Consortium doctor will put the needs of an individual patient ahead of the needs of their institution. The experts are people, too, and run the spectrum when it comes to sensitivity, thoughtfulness, ethics, and ambition. Perhaps they need another body for a (potentially risky) clinical trial or are looking to expand their database when it comes to a particular treatment protocol already in place. Will the details of your personal case determine what they recommend, or will they put their “needs” into the equation? I am not suggesting that there is evil intent involved, but rather that the institutional environment can subtly influence the way some people think. Politics is not absent from the hallowed halls of medicine, and we cannot always ascribe to our priests an entirely selfless motivation.
And so, one of the great lessons for the patient is that when you walk into a doctor’s office, it is your life at stake, not the doctor’s. A smart patient will learn the basic diagnostic, prognostic, and biological concepts of CLL out of self-preservation. I would venture to say that your ability to learn these things and how they apply to your case is a prognostic indicator.
Indeed, the fact that the science of CLL is changing so rapidly only emphasizes the need for patients to keep up with it. What have we internet-savvy readers learned in just the last six months that many of our doctors still don't know? Here are a few examples: That CLL patients are at greater risk for skin cancer. That FISH testing is significant and available. That Campath is safer if used subcutaneously rather than intravenously. That prophylactic antiviral medications are recommended before starting fludarabine therapy. That RF is more effective than F (and therefore there is little reason for anyone to do F alone). That the effectiveness of F is dependent upon the p53 gene response, which means that those with malfunctioning p53 genes (see FISH test) may want to avoid using it. That G-CSF and GM-CSF (with an EGCG chaser) can possibly enhance the depth and length of remissions in Rituxan monotherapy.
These things may seem like Greek to some people, but they become very important if you're actually facing treatment. If we have learned anything recently, it is that the one-size-fits-all approach is not appropriate in CLL. You can leave it to the doctor and hope they have done their homework, or you can do your homework, too.
Learning this stuff is one matter, what to do with the knowledge is another. After all, one can have broad scientific and diagnostic knowledge and not know how to apply it. You can be educated but not wise. And this brings us to the second quality that makes for a good doctor (and a good patient): Knowing how to think, and possessing a willingness to do so. This is what makes medicine an art – an open, curious, logical mind; an ability to make connections; and an ability to view a situation from many different perspectives.
But thinking can be clouded by considerations that do not serve the cause at hand, namely doing what’s best for your health. The judgment of many physicians, even quite good ones, seems subject to time limitations, financial considerations, institutional constraints, cookie-cutter approaches, and comfort zone issues.
Patients have their own stumbling blocks as well, especially when it comes to dealing with a subject that causes anxiety and dread. It’s hard to think straight if you have not learned to cope adequately with the emotional issues surrounding your diagnosis, and you can do illogical back flips if your thoughts are driven by fear or by wishful thinking.
Indeed, comfort zone issues are one thing that both doctors and patients have in common, albeit from somewhat different perspectives. For example, my first oncologist, who is no longer in my employ, wanted me to pursue a treatment that had worked for her other patients in the past. She balked at using more recent protocols, despite evidence of their greater effectiveness, because she had little experience with them, and this left her uneasy. Because of her comfort zone issues, I was left with fewer choices – and since this insistence on her part violated my comfort zone, I went elsewhere for treatment.
If that was an unreasonable comfort zone on her part, then it is important for patients to realize that doctors can also have reasonable ones. They take their cues from patients, just as we take our cues from them. Why is it that one patient can successfully negotiate for a new or off-label treatment while another, with the same doctor, cannot? Put yourself in the physician’s shoes: One patient comes prepared, abstracts in hand, acts rationally, and has reasonable expectations about what the treatment can and cannot do. The other is rather panicky, says they heard about something on the internet that might cure their CLL, and suggests that they be allowed to try it so long as the doctor can guarantee that there won’t be any unpleasant side effects. On which patient would you, as a doctor, take a risk?
The less you treat a doctor like mommy or daddy, the more you act like a responsible adult and demonstrate a grasp of the material, the more likely you will have a good relationship with the doctor and will get what you want out of it.
There is one last “thought” consideration that ought to be addressed. Doctors are the products of their training, and some are also the victims of it. For example, oncologists are taught in medical school that it is best to provide the most complete remission possible. And that sounds logical, right?
It certainly seems to make sense for curable cancers, but is it really the best policy for a chronic disease like CLL? What good is a great remission today if you come out of it in a few years with a weakened immune system or with complications from chemo toxicity that narrow your choices for further treatment? What if the side effects of treatment lead to a secondary cancer?
Sometimes there are no easy answers to such questions, but they certainly deserve to be asked, especially now that we have the nascent option of immunotherapy. In fact, the trick in life is not to know all the answers, but rather to ask the right questions; this is an art of particular importance for the patient.
Yet many oncologists are not used to thinking about these things, or they don’t like to be bothered by them. I call this the Alfred E. Newman (“What, me worry?”) School of Medicine. “Oh, don’t worry” is not an answer, but it is often the one given to patients.
And that brings us to the third quality that makes for a good doctor: The willingness to listen, which includes the ability to respond thoughtfully to a patient’s questions, even when they are difficult to answer.
Listening makes for a good patient, too. We’re all used to doing that when we visit the doctor, so there’s no news there. But you must also listen to yourself, to your instincts, to your gut, or your heart, or whatever you call that intuitive sense within. That is what will tell you, ultimately, if your doctor is one you can work with or if it is time to find a new one.
When it comes to our disease, we CLL patients cannot go it alone, and we cannot hope for miracles. What we can hope for is a relationship with a doctor that is based on mutual respect, one in which doctor and patient together work at their very best to meet the challenges of CLL. This requires, in part, a realization that doctors are less than gods and that patients are more than children. Each can develop a sense of trust in the other based on nothing more mystical than hard work and an effort to understand the components that go into each other’s decision-making.
In viewing today's CLL landscape, we educated patients may sometimes find ourselves thinking differently from our doctors. Being proactive requires a certain amount of moxy, a willingness to challenge the status quo, and an ability to slough off the temptation to let doctors do all the thinking – and worrying – for us.
But if you value your life, worry you must. In the last analysis, it is you, the patient, who must learn all you can, who must look ahead, who must take the time to balance the choices and to decide what is best for you. It is your life, and the responsibility for it lies squarely on your shoulders. Ultimately, whether you like it or not, you are the one who must make the call.
And so, we patients must, by necessity, become thoroughly involved in both the science and the art of medicine. It is not a role some of us relish, but what is the alternative? Ignorance, however tempting it may occasionally be, is not bliss. It is often the road to disaster.
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Topic: Patients' Corner