Uncertainty in the Diagnosis: How Do You Want That Told to You?
The patient comes to me
Sick with symptoms and uncertainty
Is it bad; is it fatal, can I be cured?
She sits in front of me with that look
That look asks me to tell her the answers
“Sure” I think to myself
No uncertainty on my part to myself
And I guess no uncertainty is on my face
I say to her “Tell me how you feel”
Then comes the stream of symptoms and complaints
I try to keep the stream from flooding my understanding
In my mind the diagnoses start their own stream
It could be this, it could be that, but it couldn’t be the other
Or could it?
I reassure myself. The physical exam will sort it all out
But does it? I thought it would but it doesn’t
Maybe this or that seems now unlikely but yet on the other hand…
The history and physical is over and the patient sits in front of me
She awaits my diagnosis
But, in fact, I, myself await the diagnosis
Is uncertainty now seen on my face?
I have no decision since, in fact, I am undecided.
How do I respond to her and her look for me to tell her the answers? I would like your help. Should the words “I don’t know yet” come from my mouth? Will that be therapeutic for her symptoms and her concerns? Should I say “Well, it could be this, it could be that, it could be…It could be”?
Should I say “I know it could be this, I know it could be that, I know it could be… it could be”? Should I just say “I am just uncertain as to what is wrong with you so let’s wait until the tests are back”? What is wrong for the doctor telling the patient “I just don’t know at present”? Or is it wrong for the doctor to be expressing uncertainty to a patient who has symptoms and herself uncertainty? Help me understand how you would expect the doctor to express the doctor’s uncertainty about your symptoms and concerns. ..Maurice.
posted by Maurice Bernstein, M.D. @ 9:01:00 PM
10 comments
10 Comments:
I think a physician who is in the state of "I don't know (yet)" should be honest with the patient and tell them so. Physicians are not omnipotent, all-knowing gods, they are just human like the rest of us. Snowing someone over with platitudes or white lies is damaging to the physician/patient relationship. There have to be ways to say "we're still in the process of figuring out what this problem might be" or "I'm not sure, but I'll work my butt off until I figure it out or come to a place where I realize I need help in doing so". Patients who don't understand that have issues of their own that cannot be fixed by a physician trying to fudge it.
There are ways to be both honest and compassionate simultaneously; I'm not suggesting to be a hard-ass and just drop it in their laps. For instance, say you had to deliver the news that the mass you found in their liver could be a cancer, but might not be. You shouldn't say "oh, it's just a growth, we'll fix it and things will be fine" when you don't know that they will. However, you shouldn't just say, "Well, it's cancer, and there's not much we can do about it now" when that's not a certainty, either. And you can't give the patient a laundry list of what it could possibly be, either; that would be too overwhelming to many, and you can't get through to someone who's shut down from literally too much information. Give them two or three of the most likely possibilities with the caveat that testing/referral/whatever will hopefully narrow it down.
I, as the patient, would want the truth without the proverbial hammer to the head, i.e., we found something, and we don't know if it's cancer or not, but here's where we do more imaging studies, a biopsy, what have you, so we can determine just exactly what's going on. And if you still don't know what's transpiring after testing, then it's time to bring in more help and perhaps a referral, all the while letting the patient know you are working in their best interests to figure out exactly what their problem might be. I would expect nothing less from a decent, caring physician.
thecatsmeow, thanks for a very well thought out and valuable commentary to the topic I presented.
To be honest to you and my other visitors here, I have to admit that after many years of medical practice, I and hopefully other "experienced" physicians have developed ways to respond to the patient when immediate uncertainty looms. Sometimes, the response is to provide comfort to the physician and sometimes to provide immediate comfort to the patient. Each of which approach might be erroneous in that particular situation. But some response by the doctor is necessary.
So the "help me" I wrote was mostly to stimulate discussion here. However, what we physicians don't know is what is the expectations of a new patient who comes for that consultation. It may be different for different patients but is there ever a common thread of expectation that if they have come to the doctor, the doctor will remove the uncertainty from their minds? And they are really looking for the doctor to do just that? Do most patients believe that the doctor has the capacity to be "all knowing" in dealing with their medical symptoms and illnesses? Or do you think that most patients are realistic about what the doctor can know or predict at any given time?
To be more complete in this discussion, uncertainty by the physician in making the diagnosis these days has a lot to do with the time allotted to perform a history and physical and the degree of distraction of the physician by other concerns or interruptions. Nevertheless, except for "classic" presentations of disease which may eventually turn out to be wrong, uncertainty in the diagnosis is not at all uncommon and has to be dealt with and the reaction of the physician should be as supportive and beneficent to the patient as possible. But diagnostic uncertainty is still a repeated personal challenge for the physician.
As a teacher for first and second year medical students, my colleagues and I teach systematic ways to develop a differential diagnosis (an ordered list of possible diagnoses that could be supported by all or some of the cluster of symptoms) and we teach the approaches to attempt to lead to a conclusion regarding the disease (or in some cases, simultaneous diseases) which the patient bears. Yet uncertainty may still persist and I think we teachers may be deficient in teaching how to best communicate honestly but thoughtfully that uncertainty to the patient. It is because of this that I would like to know what my visitors think is the way such doctor-patient communication should be dealt with. ..Maurice.
Patient needs a consolation, she count on you and that you will save her. You can't say "I don't know". You will sound much more reliable if you say "it could be this, it could be that" and that you both have to wait for the tests to diagnose the most effective treatment. Don't say you have to wait for the test to be sure what's wrong! Give her a hope, tell her that you'll be able to give her the best treatment based on test results. Sometimes, a hope is a cure!
This is a tough one because our societal expectations tend to embrace the quick fix. After all, we can look up anything on the Internet, so why can't the doctor give us an immediate answer?
I have no good advice for how physicians should deal with this, especially with a patient whom they don't know well.
One suggestion that comes to mind: If you don't know how much the patient wants to hear, why not ask, "How much do you want to hear about all the diagnostic possibilities? Do you want to hear everything I'm considering while we wait for your tests to come back, or do you want me to discuss the top two or three possibilities?" I personally would want to hear the whole list - and realistically, if there's a chance it's a bad dx, I've probably already given that some thought. But I know other people do not want to know everything.
It's OK with me personally if the doctor doesn't have all the answers. My own physician is pretty forthright in telling me he has no explanation for something, and I appreciate his honesty. It means he's humble enough to know there are limits to our knowledge. I think the important thing for patients is not to feel abandoned. Just because there's no explanation for your symptoms doesn't mean the symptoms will magically stop bothering you. I would like to know that even if my doctor can't diagnose what's specifically wrong or that it appears to be something that will more than likely run through a natural course, that he will suggest something for symptom relief, invite me to call or make an appointment if things get worse, etc.
The attitude the doctor projects can be really important. There's a big difference between bluntly telling a patient early in the conversation, "I don't know what's wrong with you" and admitting to diagnostic uncertainty later in the conversation, after you've had a chance to elicit the medical history and consider the possibilities.
With all due respect to anavar, giving someone "hope" before the diagnostic workup is complete is more than a little risky. If it comes back as something bad, patients can feel cheated and lied to, and the letdown is far more severe when they've been led to think everything will be OK.
You know, another way of looking at diagnostic uncertainty is that is a burden and a challenge to both the physician and the patient. One should not look at a diagnosis as something that one expects it to be simply delivered by the doctor and simply received by the patient. The attitude of both parties should be related to the commonality and that to attempt to resolve the uncertainty would be to consider each as equal partners working together.
Some may argue, how can the doctor and patient be considered equal partners when it is the patient that is sick with the symptoms and the doctor is the medically educated of the pair? Well, all the physician's knowledge may be worthless without the history that the patient, himself or herself, provides. Sometimes the entire pertinent history does not come out at once and the patient must expect additional questions later. Sometimes patients may be hesitant to relay to the physician certain information for various reasons but which, in fact, could be important in establishing the diagnosis. Patient's cooperation is also essential in the physical examination and in agreeing and carrying out pertinent tests or procedures.
With this attitude, both parties can talk to each other regarding the uncertainties both face but as equals. They need each other to solve the problem. The doctor can say to the patient, after explaining this essential point, that "we are both faced with the same problem but I think if we work together we are going to come up with a solution". The conversation would follow regarding the physician explaining possibilities including those, perhaps unorthodox, which the patient may bring up and then what additional historical information as yet not obtained. Perhaps the physician would tell the patient a physical exam observation that should be repeated at a later date to clarify the current findings and so on.
I think if both parties understand and express the need to the other that they both must work together, then uncertainties in diagnosis is fairly shared and better accepted and perhaps resolved by both. All of this, however, requires time and patience on the part of both parties. Taking the attitude, I have described here is much better both in their relationship and in reaching a goal then the physician stating "I don't know yet" and the patient thinking or replying "But you should!" ..Maurice.
Does it help or hurt when the patient has some sort of medical background? I'm not necessarily talking about physicians, as we know how troublesome it can be when that problem of role reversal comes into play, but take, for example, someone who has a role somehow related to medicine, such as a respiratory therapist, a lab tech, or a hospital coder...does their higher degree of medical knowledge (higher,that is, in comparison to your average layperson who doesn't have much medical background) help or hinder the diagnostic quandary you mention?
I would think it could go both ways, but speaking from the perspective of someone who fits that description, which way it goes (helpful or harmful) depends just as much on the attitude of the physician as the patient. Some physicians have this at times not terribly subtle air of "don't think just because you've Googled this, that you know anything useful". (Not that I would do this; my sources tend to be more the stalwarts like NEJM, JAMA, or other reputable scientific and medical publications). Others, I've found, have an appreciation for the patient who works hard at understanding their diagnosis and its potential implications, causes, and treatments. As you suggested, it levels the playing field and there's less "role-playing" to cloud the thinking of the involved parties.
No doubt that if the physician has a patient who, by profession, is aware of the uncertainties which can appear in clinical medicine, the playing field more readily leveled. This does not mean that such a patient will necessarily look at their own clinical situation objectively but it does help. ..Maurice.
Hello Dr. Bernstein,
I appreciate the honesty that the medical field is not all knowing. What I do expect from a phsycian is to stay with the patient and continue in their care and fight to find medical information to "HELP" them be treated. I have a very uncommon medical condition, but have been passed arround by no less than 4 doctors who refuse to continue to "treat" me and help me find answers. My final push was to a Chronic Pain Doctor who saw me for the first year and after the standard "shots and medical procedures" quit working, I was put on a maintenance MEDICINE - Level 3 scripts and pushed to the NP and medical assistants. I only see the doctor when I request an appointment but am discouraged to do so. The doctor needs to be there to schedule procedures and bring in new patients. If he doesnt do this then the multi-doctor practice would not make as much money.
The level 2 and level 3 scripts are pre-signed by a physician (not specifically MY doctor) and the names are filled in my the medical assistant after you see the NP and PEE IN A CUP.
I have NO DOCTOR who is willing to manage my disorder and continue to research options for me to persue.
The one person you think should honestly care for your medical care is the one who passes you around if they don't have an answer. DRUGS are the answer and monthly visits are money making pits especially when you don't actually see the high priced doctor. Your care is really managed by the low cost med. assts. and Schedulers. YOUR personal and medical information is handled by SCHEDULERS and Medical Assitants.
Why can't the doctor be honest and say I don't know the full answer, but we can work together to find the latest treatments?
Pain Mgmt is nothing but a money pit, where other doctors send their patients when they can't cure, cut or refuse to treat any longer.
LDB
Some patients do not trust a doctor who expresses uncertainty, and are in awe of the doctor who "knew exactly what I had the moment he looked at me" etc. etc. The challenge is how to talk to such patients without compromising your professional integrity, i.e. without feigning a certainty you may not (yet) have, or may never have despite your best efforts. Maybe you have some suggestions on how to talk to such people without confusing them completely. Because I don't :-)
As a veterinarian, you obviously don't have to (or can't) explain the pathology and treatment directly to the patient. Do you think that those who are surrogates for the animal will accept the unknown easier than if you were attempting to inform a human patient? ..Maurice.
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