Book Project: Symptoms and Diagnosis

A storytelling medical book for patients

Symptoms and Diagnosis: Are you asking the wrong question?

This is the proposed title of the book. It may change by the time the final book is ready to be published but the theme of the book will be the same. It will be about symptoms and diagnosis in real patients.

Overview: Symptoms and Diagnosis

I have been practicing Internal Medicine for the last eight years. Everyday I admit patients to the hospital with different symptoms. Although the symptoms can be categorized into different classes and different medical terms can be assigned to them, I know that every patient experiences these symptoms differently. Even when two patients get the exact same diagnosis, they do not have the exact same symptoms. More importantly, two patients with exact same set of symptoms can have completely different diagnosis based on the unique circumstances of the patient.
Despite the individual variation in the symptoms of any particular disease, the most common question that people ask me is: “What are the symptoms of this particular disease?” Well, I could simply give them a short list of symptoms that are considered the typical symptoms of the disease but that would not be very useful.

Symptoms and Diagnosis: a personal experience of what could go wrong with a simple answer

I had a personal experience very early in my medical career when someone asked me a similar question. It happened more than twelve years ago but it still brings back an unpleasant sense of guilt every time I think about the incident. I was a third year medical student at the time. I was very proud of my medical knowledge and felt like I knew a lot about medicine. Just like all third year medical students, I was always trying to impress people with my medical knowledge in the hope that someone might take my words seriously.
One day, a friend of my friend whom I had only met a few times called me and asked me a few questions. I thought it was just a social call and we had a normal friendly conversation. She then asked me  about my medical school experience and I told her how much I loved medicine and how excited I was to be learning about symptoms, diagnosis and treatment. She then asked me if I knew what the typical symptoms of a heart attack were. I was a little surprised to get that question out of the blue and thought for a while about asking why she needed to know. But my enthusiasm about the topic prevented me from asking that question and I assumed she just wanted to know. I simply told her what I had read in the text books about the typical symptoms of a heart attack. She thanked me and seemed impressed with my medical knowledge. I felt really good about the conversation after I hung up.
I did not know what I had done until my friend called me the next day. The father of that girl died from a severe heart attack. He was a 65 year old man. He had some mild discomfort in his chest but refused to get any help for it. It was just a mild discomfort and he thought he might have pulled a muscle. The daughter was a little concerned. She knew that I was in medical school but we were not very close and she was reluctant to ask me directly if she should be concerned about her father’s symptoms. Instead, she just made it sound like she was interested in knowing the symptoms of heart attack just out of curiosity. If she had told me about the symptoms of her father and had asked me if she needed to be concerned, I would have told her to take him to the ER right away. Even as a third year medical student, I knew that many patients with heart attacks did not have the typical symptoms. I knew that any chest pain in a 65 year old male needed to be taken seriously.

Are you asking the wrong question about symptoms?

Most people are still asking the question about symptoms in the same wrong way. Especially, in this age of internet, too many people are repeating the same mistake. Unlike that girl, people do not even need to know anyone in medical school to repeat that question. When they are concerned about a particular disease, they just type “symptoms of …” or “common symptoms of …” and try to find websites that describe that disease and list the common symptoms. Unfortunately, there are too many websites that target people like that. For example if you search for the phrase “symptoms of pneumonia”, you will get about twenty one million results. The first page lists 10 websites that are very reputable and considered authentic medical websites. They all list the detailed symptoms of pneumonia very accurately. They even list the different types of pneumonia and list slightly different symptoms under each category. This information is very valuable to someone who is curious about the symptoms and types of pneumonia in general. They describe pneumonia symptoms in great detail but they do not describe the patients with pneumonia. They consider symptoms as something factual and objective.
But symptoms are not objective data. Symptoms are as subjective as the individual describing them. Symptoms are felt by the patients and as you know feeling is very subjective as personal. Two patients suffering from the same type of pneumonia do not feel exactly the same. Many people who searched “symptoms of pneumonia” were not just people curious about symptoms of pneumonia. They probably were concerned about someone who could have pneumonia. Some of them may try to match the listed symptoms with what that person is having and may be falsely reassured when the lists do not match.
The important point that most people forget under these circumstances is that the severity of pneumonia or the risks of complications do not have any relation to how closely the symptoms match the list. Someone may have only one of the ten symptoms listed in the website. But that patient can easily have the most severe or the riskiest type of pneumonia. The risks of complications from pneumonia do not depend on how typical the symptoms of pneumonia are. The risks of complications depend on who the patient is. It depends on what other medical problems the patient had. It depends on how old the patient is. It depends on how active or sedentary the patient is. It depends on how fat or thin the person is. It also depends on how many packs of cigarettes the patient has smoked in his/her life.

The correct way to think about symptoms

The correct way to think about symptoms is to think about the patients first and that is what I plan to do in this book. I will describe patients before describing their symptoms. Unlike the lists in the textbooks or the websites, the patients I take care of are real people with real lives. To know my particular patient, I have know about the life of the person in front of me. I have to ask very detailed questions and need to get a very up close and personal look at the patient’s life. I will only be able to put the symptoms of the patients in the right context when I know the person well.

Here is your chance to be a part of the “Symptoms and diagnosis” book project

If you have any questions or comments that you want answered in the book, please put down your comments below. If your idea gets picked up by the publisher, you will have the chance to get your name published in the acknowledgement section of the book. Go ahead, tell us what you want to read and be an important part of the project.

  • aidel

    Hi, as a veteran critical care nurse at a major teaching/research hospital, I’d just like to add that it is not always so easy to get “the story” from the patient, especially when the patient has already crumped and is intubated. I was very excited when I first saw your commitment to listening…but I would add that it is at least as important, especially in the ICU, to *listen* to the nurses. We spend the most time with the patient. We know the patient best. We may pick up tidbits from the family that are important data points. I’m not sure how to explain the reluctant nurses you describe in your story, but in my unit, that would not have happened — because we all (or most) know that a patient having a seizure would not be able to give a blow by blow account of it. What I would like to see in your book is the more general problem of communication throughout the hospital. I served on our Hospital Ethics Committee for several years and nearly every single problem that arose was a problem of communication. I would also like to see some time and attention spent on what currently passes for “informed consent.” I see a huge problem with consents being signed right and left that are not truly informed. It is one thing when the team is acting in an emergency but quite another when Attendings see opportunities for ‘teaching moments.’ I look forward to your book. A note of caution: it would be a big mistake to blow off nursing contributions to arriving at a correct diagnosis. Good luck.

    • Nabin Sapkota, MD

      Thank you Aidel,
      I greatly appreciate your comment. “Listen to the nurses” is a great idea. In my story, I was the first person to really interview the patient in our hospital. The nurses just had the report that “patient with seizure” was coming in from outside hospital. They had not actually asked him specific questions. I agree that patients and family spend a lot more time with the nurses and share more information with them than they do with doctors. I will definitely include a few stories in the book from a nursing point of view. My goal is to to tell patients (who have no inside knowledge of medicine) the story of how medical decisions are made in the real world. I hope to educate patients about real life symptoms and diagnosis instead of the over-simplified textbook patient education material they normally get.

  • Kathryn Carrington

    This is a wonderful book. Thank you.

  • emily

    Hello Doctor Sapkota,

    I enjoy your blog and I hope you keep up with it, I think for patients, medical students and doctors it’s a great read and informative.

    As a patient and a person who is curious about medicine, I appreciate your focus on understanding symptoms based on the individual and not the disease. I think a generalized approach to diagnosing malady or disease unfortunately leads to under-diagnosis and for more complicated disorders non-diagnosis which in itself has a rippling effect on the way specialists or other doctors understand a patient’s condition.

    I read your posts on heart attacks and I thought you might find it interesting that the second most misdiagnosed ailment causing death in which a person was diagnosed or sought treatment for are heart attacks, the first is pulmonary embolisms and the third is liver cirrhosis. I started reading autopsy reports for a condition I have in better hopes of understanding it and I found alot of alarming things further studying autopsy.

    Also I read a study that conducted or compared mri/ct scans for brain disorders versus the post-mortem diagnosis and the difference between the two was on average 30 percent. Often MRI/CT scans do give a completely accurate assessment particularly in less pronounced cases like thin cerebral hemorrhages.

    Anyway autopsy rates have dramatically fallen since the 1960s and there are studies speculating on why this is, I would guess one reason is the requirement of informed consent, expense, lack of insurance reimbursement and also increased confidence in diagnosing/understanding medical ailments due to advance technology and increased knowledge.

    I personally think that the rate should increase to around 50 percent again and there should be particular focus on diseases which are not fully understood yet and also diseases with high morbidity rates or poor prognosis. Also in general it would aid medical research and disease management in ways that can’t be supplemented by technical research or prospective studies. Over 50 autoimmune diseases and even Alzheimers were discovered because of autopsies.

    Anyway that is just my opinion as a laywoman. I just think that medicine is an immensely important field and that as society we can and need to accelerate medical research and technology to make disease a thing of the past.