Often patients visit the doctor with a litany of symptoms and the hope that the doctor can give them a diagnosis.
But as Dr. Pauline W. Chen notes in her “Doctor and Patient” column today, a diagnosis doesn’t always lead to better care. The problem, she notes, is that once doctors settle on a diagnosis, they start treating that specific disease, rather than always listening to the specific problems of the patient in front of them. The illness may have a name, but the patient has become anonymous. Dr. Chen writes:
Over the last century and a half, however, medicine has increasingly decoupled disease from the individual. This decoupling has given rise to the concept of precise, objective and quantifiable diagnoses, diagnoses so separate from patients that they seem in many ways to take on a life of their own…. When we know what is wrong, we sometimes stop paying such close
attention to those patient experiences that seem to have little relevance to the diagnosis at hand. We focus less on the individual and more on the diagnosis.
To read more, check out today’s fascinating “Doctor and Patient” column: “The Tyranny of Diagnosis.”
Have you been frustrated by the medical community’s inability to diagnose your ailment? Did your care improve once doctors were able to put a label on your problems? Please join Dr. Chen in the discussion by sharing your thoughts and experiences below.
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From 1 to 25 of 173 Comments
How is a doctor supposed to treat something when he or she has not arrived at a diagnosis? Sometimes diagnosis is very hard, but diagnosis points the way to treatment.
— Gail PerryI am not sure I understand the issue here. People who want hand holding and emotional support can look to other non-md sources. For example, my mother went for years to a chiropracter whom she liked alot.
Doctors are increasingly a precious commodity and we need them to stay focused on the things they are trained to do. I don’t see a doctor because I want sympathy.
— Debbie R.Wrong question.
You treat a patient with a disease.
“Or” is a trick word.
CB
— cbWhat is a doctor’s job, anyways? It seems like the definition has broadened, where on top of bureaucratic and administrative duties that are overwhelming in itself, doctors are expected to play the role of loving parent, friend, and therapist as well as brilliant diagnostician and healer. I see this as a backlash of the other extreme, where doctors have foregone all patient wishes and have treated diseases in a rude manner. But now I feel that the pendulum has swung too much in the other direction. Is it too much to expect that doctors treat the patient’s disease, while treating them with respect?
Or is it a much bigger question, a question of control? A patient with a disease may feel helpless, and feel the need to control more of their surroundings, including their doctor. There needs to be more realistic expectations set, on what patients should expect from their doctors.
— j“When my mother had no diagnosis, her family and friends, clinicians, and others at first listened intently, sifting her narratives for every possible clue. But then most of us eventually lost interest, as if her experience could not really exist if it had no name.”
That about sums it up for me.
— HThis strikes a chord with me. My husband, age 75, was diagnosed with alcohol-induced cirrhosis in 2006. Repeatedly his doctors would ask him, How much did you drink? how many drinks a day? My husband tried to answer truthfully. While he was in the Navy he drank a lot with buddies ashore, but not for weeks at a time aboard ship. During his first marriage (7 years) he didn’t drink at all. In following years he drank socially, maybe nothing during the week but several cocktails on weekends. I tried to explain that he had never been a heavy drinker to the tune of a quart of liquor a day. The doctors always somehow seemed skeptical.
Earlier this year my husband was diagnosed with hepatoma. Most recently a liver specialist referred to his ailment as “your alcohol disease.”
My husband is bipolar and suffered from gout. He has taken mega amounts of allopurinol, colchicine, lithium and many, many antidepressants over the years. He and I don’t know if the cirrhosis and cancer are primarily the result of alcohol use (or abuse). I know medicine is not an exact science and sometimes wonder how these practitioners can come down on these issues with such certainty.
— Kathythe question really is do you want a dr like the one on the tv show “house” that is smart and tries to figure out the root cause of the problem and is good at it but totally rude? but at the same time he does listen to what the patient has to say and looks at all conditions but is very rude, why? because he is that good and has that ego. but that is tv and he never messes up.
— jayGiven a list of complex symtoms and findings, good doctors develop what we call a differential diagnosis on the first visit.
This is a list of diagnoses, starting with the most likely, and ending with the least likely. As further tests are done, and more information comes in, we then and only then rule out the incorrect diagnoses, and settle on the correct diagnosis.
Granted, in complex cases, it takes time, sometimes weeks, or even months in the most difficult cases.
Also, a doctor has to be ready to change his/her diagnosis if further infornation dictates it is wrong. We must keep an open mind, and when we’re not sure, keep questioning and withhold the more toxic treatments or surgery until we’re sure.
— jackIt’s easy to grasp the problems when there is no diagnosis or a misdiagnosis. We all know of cases like this, when the outcome was bad or when someone lived with an illness for too long before it was treated. My husband was once told, “to get a life,” because he kept going back to the doctor with heart-related complaints. He finally convinced someone, only hours before he probably would have had a massive heart attack. His total self-confidence and self-possession got him beyond that non-diagnosis, and got him a stint that saved him from a heart attack.
What I had not considered, is the tyranny of the diagnosis, when it is all the doctor can see. But then, I could see how someone becomes nothing but an illness or a condition, when it’s something pervasive, systemic, or obvious, such as M.S. or Parkinson’s…or even pregnancy. It becomes difficult to see other illnesses that need treatment.
Beyond encouraging caring people to go into medicine, I’m not sure how a system can solve a problem like this one. Looking beyond or through the illness, to someone’s humanity to perceive something else or something more, requires emotional intelligence and probably, familiarity with the person as an individual.
Oh dear, back to needing a real, human relationship with a good pcp. Look forward to the posts to come.
— WesleyYou can have lots of hand holding and you need empathetic doctors who LISTEN. But do you want an empathetic doctor who doesn’t know what your diagnosis is???
— jeffjWhat you need is a doctor who arrives at a diagnosis but is able to always re-assess that diagnosis based on new things that may arise.
An exampkle would be shortness of breath and you think it’s asthma but the next visit the inhalers don’t work so you re-assess and get an echocardiogram and say “hey this is heart failure!”
I was sick for nearly a year as a young woman; in my experience, if doctors cannot make a diagnosis, many begin blaming the patient for their illness. By the time I got the correct diagnosis (celiac disease), most of my doctors believed I was either a hypochondriac or mentally ill. For a patient, the correct diagnosis gives some indication at least of the range of parameters–could this kill me? can they fix this? For many doctors, however, providing a diagnosis feeds into their sense of worth as a professional. Many would rather walk away from a troubling case than admit that they simply don’t know the answer.
— HCYes — I have felt like once you are diagnosed — you become a disease and nothing you say has much relevance from then on.
I was diagnosed with fibromyalgia, and then suddenly everything became about that. “Go home and exercise” was the prescription.
Unfortunately, that didn’t help much. Also, I got worse and worse and became very depressed. So I saw a psychiatrist. The psychiatrist asked, “A lot of your symptoms sound like they may be related to a thyroid problem. Have you been tested for a thyroid condition?” No, I had not. So I got my regular doctor to test me. And lo and behold, I had a thyroid condition! Even then she put me on a really low dose (didn’t believe I REALLY HAD a thyroid problem) that didn’t help. So finally I went to a specialist who put me on a better drug at a higher dose. Only then did I feel better.
Also, I had sleep problems. I was told that was typical for fibromyalgia. So I was prescribed every sleep medicine ever manufactured. Unfortunately, every one had side effects (like feeling like a drooling idiot; “sleep browsing” on the internet and discovering the next day that I had ordered things online which I had no recollection!). It wasn’t until I went — again on my own — to a sleep specialist and discovered I had sleep apnea! I got a C-PAP and sleep 1000% better. I suffered for ten years and spent hundreds of dollars on drugs because that didn’t “fit” into the fibromyalgia profile.
I found a new doctor, but I’ve rarely see her because I’ve become so disgusted with medicine. They don’t really DO anything for you (in those 15 mins. cattle calls) unless they can prescribe a drug. And the drugs do more harm than good most of the time. So what’s the point?
— NowaxI thought Pauline meant that you have to have a holistic view of the patient in order to really grasp what’s wrong with her. And that if you just treat the symptoms, the illness remains. But certainly it feels nice if the doctor is sympathetic, even if that’s not why you go see them.
— SusannaDoctors get paid for treating diseases, not patients.
The dissociation of the patient from disease is ever more prominent in modern medical discourse; e.g. no more “diabetics,” but rather “people with diabetes.”
Doctors tend to be mindful of patients’ wishes regarding diagnosis and treatment, but fundamentally their jobs are to scientifically diagnose and treat pathology . If an allopathic diagnosis is not apparent, patients are either ignored or turfed to psychiatry. Rarely, new diseases or perspectives emerge, but that’s not hinted at in this article.
Perhaps in some distant future this will change, with mindful reform, but until then it’s silly to complain, much as it is silly to complain about corporations being greedy and soulless, when we legally require them to be that way.
Gauging from the responses it’s also apparently silly to write these sorts of slanted articles, the ones that advertise plainfully like a day-time talk show: “Have you been frustrated by the medical community’s inability to diagnose your ailment?”
— Joseph GI have been struggling with health problems since my mid 20s — all those countless doctors/specialists’ visits did not help me a bit, all they did was handing out drugs which harmed me even more — they never bothered to ask what I did at work — I was a chemist who used large quantities of chemicals pretty much on a daily basis, and we all know chemicals are harmful to our health. Then in my late 30s, I was permanently disabled due to chemical injury, and my health was completely wracked. Doctors need to be more aware of occupational/environmental causes, and instead of just prescribing pills, they should help patients find out what the causes are and the following change of lifestyle.
For someone who is interested, please read books by Dr. Theron Randolph and Dr. Doris Rapp.
Patients need to ask themselves question like this: what did I eat? what did I breathe? was I exposed to noxious fumes/insulated air? did I just move into a newly renovated home/office? Anything you being into your home can potentially have an impact on your health. Chemicals from pain, carpet, furniture, cleaning products (laundry detergents, fabric softners, dryer sheets all have unregulated neurotoxic chemicals that give off scents…..), all scented products can be harmful for the sensitive….
For your family’s health and for our environment, stop using all scented products (perfumes, colognes, conventional laundry products/cleaning products……). Buy unscented products only (Trader Joe’s, Whole Foods etc —- any health food store would carry them. It’s good for you, it’s good for your children and pets, and it’s good for our planet.
NO SCENT MAKES SENSE.
Perfume kills. Chemicals kill.
We want to be able to breathe. When you pollute the air with all those scented products, you literally take our breath away. Find out more, google chemical injury, toxic laundry products, toxic dryer sheets etc.
Thanks.
— mattDr. Chen,
You raise a perplexing and crucial question, and then, despite your years of personal and professional experience, offer no compelling resolution. Are you still searching, or have you put up a straw man?
From Pauline Chen: I think Charles Rosenberg’s essay offers a compelling perspective, one that has resonated with me both personally and professionally. It certainly has made me look at my work and my personal experiences differently.
I’m not sure there is a single answer per se, but I do think that recognizing the power of diagnosis — on both doctors and patients — can help shed at least a little more light on why there is such a rift between us.
— -A. A. S.as a physician, i’m pretty impressed with the sophistication of the people who posted here, understanding the space between the patient and the disease, and the need for physicians to give neither short shrift.
of course it’s the readership. try and find a discussion this nuanced on any other major news site. the wpost has been particularly disappointing.
— doc32Once a diagnosis is settled on, there is often no attempt to re-examine the evidence: the conclusion is quasi absolute. The third part of Nanni Moretti’s 1993 film Caro Diario deals with this phenomenon: Moretti had intense itching, so went to a succession of dermatologists, each of whom “treated” the itch. Finally an MD friend (not a dermatologist) realized that he had a common symptom of Hodgkin’s Lymphoma and urged him to get it checked out immediately. Guess what? With Hodgkin’s the symptoms are frequently treated to the exclusion of the underlying disease.
There is often a tendency to treat neither the patient NOR the disease, but only treat the symptoms. WRONG.
— Rob FiautoSince I was about 8 years old, I have had a condition which causes severe pain in my feet, making it very difficult to stand or walk. For many years I regularly visited new doctors — podiatrists, orthopedists, rheumatologists, vascular specialists, experts in sports medicine, even psychiatrists — in a fruitless effort to find out why my feet hurt so much. One doctor told me that the bones in my feet and lower legs “lit up” on a bone scan, and for awhile that gave me hope that an explanation would be found, but ultimately, all anyone could tell me is that I am not suffering from any known disease or condition. So I know first hand the initial interest and excitement that doctors have in a mysterious condition, which is eventually followed by frustration, and ultimately disinterest or even hostility (such as the doctor who told me, “if you’re feet hurt when you walk, then don’t walk”). I finally stopped going to doctors and I just try to live with my condition as best I can. From my own experience, I sometimes wish that doctors were less fixated on finding a “diagnosis,” but without a diagnosis, they have no help to offer.
— SarahLet’s put semantics aside for a moment.
Doctors CAN and often DO treat patients without a unifying diagnosis.
Sometimes it is easier to tell a patient what they DON’T have than what they have. Many patients come to a doctor with a constellation of symptoms and some fears about what those symptoms represent. Often, they are tremendously relieved if a doctor merely says “after examining you and performing some tests, I am relatively confident you don’t have…XX…”
where XX is cancer, heart disease, AIDS or some fear-inspiring disease. We can then proceed to “treat” the patient, usually with lifestyle changes, perhaps some supportive psychotherapy and, if need be, some medication.
A lazy doctor needs a diagnosis. Most good primary care physicians, and some good “specialists” understand that many patients have symptoms, but not all have diseases.
— famdocA good listener and good communicator can help such patients.
I will have to find and read Rosenberg’s book — the word doctor is from the Latin root docere, to teach. Medical doctors ought to be teachers, in the sense that they help to interpret what the patient is experiencing. We are supposed to comfort, explain, and care for people who suffer. In our current world, however, the expectation of all, laypeople and physicians, is that the sole job is to cure. Scientific medicine has been a wonderful addition to mankind, but it comes with the price of these altered expectations. Add to this the time wasted in dealing with a nonsensical bureaucracy of insurance and HMOs, and the denigration of strategies to prevent disease in the first place ( the world without vaccines was nasty, short, and brutish for many, as one example), and there is little wonder few are satisfied anymore with medicine — either as patients or as physicians.
Diagnosis can be tyranny — it carries along often for a lifetime, and if incorrect (that happens far more frequently than we might think it does) can increase rather than decrease suffering. I wish I had solutions — they will have to come from not just the medical profession but from society, in what we do and what we expect.
Thad Zajdowicz, MD, MPH, FACP
— ThadJoseph G said
‘Doctors get paid for treating diseases, not patients.
The dissociation of the patient from disease is ever more prominent in modern medical discourse; e.g. no more “diabetics,” but rather “people with diabetes.” ‘
In med school, we’ve been told that it’s more respectful to refer to a patient as “a person with diabetes”, as in saying, “This is Mrs F, who has diabetes” rather than “She’s diabetic”, or on surgical rounds “Mr W is a splenectomy”, as (we’re told) was once common. Surely, rather than “dissociating” the patient from their disease, this enables us to see that there is more to the patient than just their diagnosis, and helps us to view them as a person. I certainly think it’ll help me when I start hospitals.
And in terms of the overall discussion, I don’t have any idea which side of the argument I believe in, whether it’s better to have an omnipotent but obnoxious “diagnostician” or a “bedside manner type”…hopefully there’s a balance that can be reached.
— Hugh AWhat frustrates me about the search for a “diagnosis” is that patients with vague symptoms will often doctor-shop until they find an MD who gives them “a diagnosis”. This new doctor is hailed as the healer who listened to them and “diagnosed” the problem appropriately. Unfortunately, people are sometimes so desperate for a diagnosis (especially if it happens to match the one the patient is convinced, through their own research, that he or she has) that they can be misguided and misled by unscrupulous MDs who are just looking for another work-up and procedure without regard to what that “diagnosis” means to the patient. Not having a diagnosis is frustrating for patients, and often makes them feel like “it’s in their head” or they aren’t really suffering if there isn’t a disease to name their constellation of symptoms. It is unfortunate that in our culture we are so unable to accept the unknown or cryptogenic that patients will settle for any diagnosis in order to give their symptoms a name.
In my own practice, I try to listen to my patients’ complaints (and they can let me know if I don’t!) with an ear to what their diagnosis may be, but I am comfortable letting a patient know if I do not have a definitive diagnosis for their symptoms. I encourage my patients to look for second opinions, especially from experts in academic medical centers, but they all know and understand that they should discuss the other doctors’ impressions with me so I can help them judge their treatment options. I do not encourage doctor-shopping for the sake of “a diagnosis”, but rather for the opportunity to have a new set of ears listen to that patient’s complaints in case. I often tell patients who do not have a definitive diagnosis that “while we do not know the name of what’s causing your symptoms, I can help you cope with them and so you can move forward, and hopefully eventually we will have a name for what ails you.”
— genmedI have a semi-rare skin disease. Once diagnosed, my doctors (note the plural) “knew” what to do. They would check for the major symptom, and when they couldn’t see it they figured everything was okay.
But the disease is a lot more than that one symptom, and it took a while to find a doctor who was willing to deal with all the ramifications, i.e., to treat the patient. And it takes an online support group of people with the disease to help me navigate my life in this changed body.
So, sure, diagnosis is important. But doctors can be blinded by the diagnosis. If the major symptom is purple lesions, when there are no purple lesions they figure the patient is fine. But this can be very very wrong.
— JudyDr. Chen’s mother was lucky. Mine suffered for thirty years with kidney disease of unknown origin, and died of end stage renal disease in her mid sixties. Because her doctors were unable to determine what was ‘wrong’ with her, she was not considered for a transplant, and her care was scattershot and indecisive.
In addition to the psychological implications of a diagnosis or a non-diagnosis, there are true, life-threatening implications of a lack of clear diagnosis. And it is difficult to get doctors to focus on an illness of unknown origin, even when its lethal symptoms are quite evident. Physicians, just like the rest of us, have a deep fear of the unknown, and avoid patients in a pathologically passive/aggressive manner when they can’t follow a pre-ordained treatment plan.
Physicians have a responsibility to care for the patient, whatever that might take.
— Cathy