The family doctor or nurse’s job is an impossible one. Given our imperfect description of symptoms, and possibly a blood test, they have to figure out what intervention will help us return to a stable, healthy life. The problem is that human beings are probably the most complicated system that we can imagine to try to regulate. Our environment, psychology, and life habits interact deeply with dozens of major internal organs and body systems which manifest tens of thousands of possible known problems. We know a great deal about the components of our body, but what we do know is dwarfed by what we don’t know about how these components interact with one another. After a brief digression into what makes medicine a hard problem, I’ll introduce some ideas for what we, as patient participants, can do to improve the problem solving process, our own care, and healthcare at large.
A recent TEDMED talk by Albert-László Barabási highlights the rich system of interconnected networks the exist both within and outside our body; networks are a way of viewing the world that we are only beginning to understand. The functioning of our body is not independent from our mind and environment. The bugs in the soil communicate with the symbiotic bacteria that enable us to digest food, the micro-RNA of the plants we eat may directly change our gene expression, the inactive ingredients in breast milk line a baby’s intestines and protect it from external pathogens until the immune system has matured, and our expectation of a treatment’s effect can physically transform how our bodies function (the so-called placebo effect).
Sometimes what is wrong with us is local and simple such as damage from a cut or a broken bone. Sometimes what is wrong is deeply complicated and caused by the interactions of several simultaneous problems. Medicine is typically extremely good at solving local problems; surgeons perform miracles on a daily basis, we can manage certain types of cancer with ‘simple’ failures (e.g. Gleevec‘s action in chronic myeloid leukemia), and we can manage the symptoms of many infectious diseases. Unfortunately, most conditions are complex.
For any set of symptoms, there are multiple possible causes. For any given cause, there are multiple possible symptoms which vary from person to person and a variety of possible treatments. For any given treatment, there are multiple short and long-term consequences. Treatment side effects vary, sometimes dramatically, from person to person. Moreover, the tools and modeling of the medical system largely ignores mental and environmental contributions to the network effect on our health. If I live in a house full of mold or dust mites to which I have an allergy, the doctor can suppress my histamine production or suppress my immune response, but that only delays the day of reckoning. Ultimately we have to take action to change the other parts of the larger system we live in and these are things we control and that our doctors can’t directly influence.
Our experience of physical and mental health is the consequence of the dynamic behavior of the network of all these systems. The process of evolution that led to our present form was able to “think” about all these components simultaneously and so the proper functioning of any part of our system can depend on many or most of the others. Unfortunately, we do not yet know how to think effectively about complex network interactions and it is extremely challenging to intervene in systems we only partially understand.
The point of this digression is an important one. Every doctor by definition only has a partial understanding of the human system in general, and your system in particular. This means that sooner or later in your life a doctor will misdiagnose you, take too long to figure out what is going on, treat you incorrectly, or make some other kind of blatant mistake. It’s not that they are bad doctors, it’s that they’re being asked to solve an impossible problem – know what is happening with any one person in 15 minutes. The biggest problem with many doctors is that they don’t internalize this fact. We can improve our chances of getting the best treatment in two ways. The first and most important is by finding the doctor that best fits you and/or your specific problem. I call this Physician Replacement Therapy!
If a doctor has seen a great number of patients with a particular set of health symptoms or underlying conditions, then they will have a good understanding of the ordinary variation among people including the odd cases, rare diseases, and critical external influences on diagnosis or therapy. However, the more times you have seen the same doctor, then the more they will understand your particular system, what changes are practical for you, the complications of your personal life, etc.
Ideally, our physician has both: deep knowledge of us as individuals, and deep knowledge about the symptoms we are currently facing. But this is an unrealistic ideal. So the question is what can we do to get the best possible care?
At least in the US healthcare system, we are still the final arbiters of who we work. For many low-grade ailments, it makes sense to work with the same person for a long time (e.g. pediatrics) even if they aren’t brilliant or deeply experienced in a particular area. For common ailments with prosaic treatment options, the doctor’s knowledge of us as individuals will be highly valuable. Effective long term relationships require a doctor that:
- Listens to us,
- Is reasonably available,
- Remembers us from visit to visit, and
- Is aligned with our philosophy of health.
If your regular doctor doesn’t fit this bill, then prescribe yourself some Physician Replacement Therapy. The working relationship is more important than the medical expertise because the goal is to have an expert learn about and work with your individual system. This is particularly important in chronic or critical care contexts where your primary doctor will need to help you navigate the input from other care professionals or manage complex interventions that take place over large periods of time.
Complex Care Situations
When you have a specific kind of acute problem such as an auto-immune condition, a major injury, an unusual infectious disease, or cancer, you need to bring more expertise to bear on your problem. In these cases the knowledge and experience of the physician becomes far more important. You want to understand the tradeoffs and choose the intervention that is most likely to work for you. Because medicine is so complex and the experience of the doctor is so relevant, different qualified people may come to very different conclusions about your specific case. This is why it is so critical to get second opinions, to find a doctor that will think about that second opinion and your primary doctor. When you are trying to find a physician to work with on one of these problems, it’s time to break out your own prescription pad and shop aro
und for the best expert for you.
Some important questions are:
- Do they listen to you?
- Will they work with your primary doc?
- Do they encourage you to get other opinions?
- How will they work with those other opinions?
- Are there complementary specialists they work with?
- Do they work with other specialists outside their specific institution?
Complex care requires a team, so you need a team player. If you don’t feel comfortable with a specialist, it is time for more Physician Replacement Therapy. Find someone you do feel comfortable with. They aren’t getting the point? That’s their problem, not yours! Once you’ve found a good fit stick with them as long as they can because it is expensive and time-consuming for everyone to spend time helping a doctor become familiar with your case.
The Role of the Patient
While laboratory results tell part of the tale, many of the problems we have are diagnosed via our interview (see How Doctors Think). When it comes to diagnosing the cause of our health condition and identifying a medical intervention, there isn’t much we can do directly to help our doctor. Most of the time we simply don’t have the detailed knowledge to engage in the kind of problem solving that nurses and doctors do for us. However, we can help to improve the quality and flow of information in the doctor-patient encounter and it is critical to do so because our time with our doctors is both expensive and short. This is particularly true in a walk-in clinic or ER context where there is little physician continuity. Meeting a doctor for the first time accounts for a substantial fraction of medical care, at least here in the US.
(Now take a break and if you haven’t see it yet, watch e-Patient Dave’s TED Talk about how patient-provided information saved his life and all the things we can do to help our doctors and our healthcare system)
Notice in my two lists of criterion for doctors above, the #1 item in both is “do they listen”. Our reciprocal responsibility is to observe effectively and report efficiently. Some good habits for doing this include:
- Don’t lie or hide the truth from your doctor. Better to be embarassed than sick!
- Research possible conditions, look at what symptoms are relevant to them
- If your doctor doesn’t have your history, do the paperwork ahead of time or bring it with you
- Do your symptoms vary together?
- Write down your symptoms and recent history ahead of time so it is clear in your mind
- Think about the important qualities of your symptoms: type, location, onset, severity and how they change over time
- Be concise, try to present each symptom or observation in 1 sentence
- If you have theories about what is going on, present them as questions
- Write down all your questions ahead of time and check them off as you go
- Take notes, send them to your doctor or nurse after if they support e-mail (to verify your understanding)
We often complain about doctors who aren’t trained to have a good bedside manner or to listen well, but how many of us have taken the time to train ourselves to be fantastic patients? Maximizing the quality of a care encounter is a two way street. Find a doctor who gets this, then make sure you are holding up your end. You may find that you can transform a sick healthcare process into a healthy one.