The last couple of weeks have been a bit rough. Usually my personal life and work life have very little to do with each other, but a perfect storm of events has pushed them too close for comfort.
As a family physician and clinical informaticist, I’ve dedicated the better part of two decades to advocating for quality care. I’ve also spent a fair bit working on ways to leverage technology in order to deliver that care, as well as to help manage costs so that our healthcare system doesn’t topple under its own weight.
One of the hallmarks of trying to maintain that balance is the idea of evidence-based medicine. That approach is a data-driven way to try to comply with the physician’s prime directive of “do no harm;” it allows us as clinicians to try to make better decisions. Data that comes from research has a stronger impact than that arising from expert opinion or case reports. It doesn’t prevent us from taking the latter into consideration, but provides a framework for trying to make the best choices from the information available.
Evidence-based data is used to create clinical practice guidelines, which in turn helps physicians determine how to manage groups of patients. It’s the backbone of population-level health policy and has been a key component in US healthcare in that evidence is often used to determine whether Medicare or other payers will cover a particular treatment or service: whether it is considered to be medically necessary and/or clinically appropriate. To achieve the highest level of integrity in an evidence-based schema, data has to be peer-reviewed and reproducible.
This can be in sharp contrast to how most patients view the world. Often patients have heard about someone’s cousin, sister, or friend who had X condition and Y treatment, and stories about whether something worked or not travel at an amazing speed. The grocery store checkout lane is full of magazines talking about health-related issues and what various celebrities or other public personas have been through or done regarding a given condition. Walk into the average beauty shop in middle America and you will find a variety of armchair medical quarterbacks. The general public, especially when they are patients themselves, doesn’t care about evidence-based medicine, but rather about what is happening to them and the people around them.
When you have a patient — or family member, as in my case — who has had a bad outcome despite following the evidence, it makes things extremely difficult. That is where my worlds have been colliding, and it feels pretty disjointed. As someone who has taken more statistics classes than I ever cared to have taken, I know that there are always statistical outliers and the potential for chance alone to influence a given situation, especially when multifactorial disease processes are involved. We can only make recommendations based on population-based data and previous outcomes. Although the push towards precision medicine continues, using existing population-based data is going to be the reality for most of us for the foreseeable future.
We as physicians have to follow the best information we have, and sometimes it’s going to lead to poor outcomes. There’s no way to beat the statistics for every single patient. We use evidence to determine when it’s going to be cost-effective to do a particular screening service or treatment for a given population; we use it to determine when it is likely to be more harmful to do a procedure than not. In effect, this becomes a bit of a healthcare rationing mechanism, but with good intentions and well-reviewed evidence. The fact of the matter, though, is that it doesn’t make a bit of difference if your physicians followed the best evidence if you’re the statistical outlier.
What exactly should we tell the patient who didn’t have a screening service because it wasn’t indicated for her age group based on the evidence, but who developed cancer and doesn’t understand “why no one cared enough to make me have that test?” It’s not that no one cared, it’s that the risk / benefit / cost / value factors didn’t make the case to order the test.
On the flip side, what do you tell the patient for whom you performed a test based on clinical suspicion, but Medicare denied it because it didn’t meet criteria, and now the patient is calling you to apologize because she knows you can’t even balance bill for the services that you ordered based on the individual situation and shared decision-making? As physicians, how do we reconcile when we did all the right things, but bad outcomes still happened?
If we were to perform every test for every patient, the healthcare system would go bankrupt even faster than it already is. We’d also cause a fair amount of harm, because with increased testing comes increased anxiety, increased false positives, and increased follow-up testing. Treatments cause complications and sometimes disability and death. But what do we do with the patients who are ready to “fight like hell” –because that’s what our society says you should do whenever you are diagnosed with a disease — but as professionals. we know that such a fight is probably going to cause more suffering, disability, and expense than the patient is really prepared to endure? It takes a lot more courage to take the less-aggressive approach, but it’s often rejected as “throwing in the towel” or “giving up.”
When our own loved ones are in that situation, it’s incredibly difficult to reconcile the science with the reality of what real people are going through. It’s even worse when you have to preach the evidence every day but you know that even the best evidence will still have negative outcomes. Although it’s no one’s fault. it will still feel like it is.
Depending on age and other demographics, it’s doubly challenging dealing with this type of situation with patients who came of age when the US was considered a superpower. These patients watched us vanquish polio and smallpox. They see “modern medicine” as being just short of a miracle, and that we should be able to continue to cure and conquer the diseases around us.
Limitations on technology can be somewhat understood, but limitations due to cost and statistical improbability are nearly incomprehensible to many of our patients. This dilemma is one that many of us face all the time, but having to process it on a personal level is still difficult. It’s hard to educate physicians on the use of clinical decision support and clinical guidelines when you know first-hand that they’re going to leave patients behind. Those patients are going to be someone’s grandmother, father, sister, or mother. Or maybe your child or your brother.
There is a high level of pressure for physicians to be perfect, to never miss a diagnosis or fail to recommend a treatment. Many patients don’t understand the external forces that drive our decisions outside of the evidence – including whether a service will be covered, whether the patient can afford it, whether they can get a sitter so they can go have the procedure, etc. Those are all things that need to be taken into account as we move forward caring for populations rather than individuals.
We also need the best and brightest working on the psychology of our approach – how to help patients cope when they end up on the outside of the protocols’ intent, as well as how to help the healthcare providers whose decisions (whether shared or not) put those patients on the outside looking in.
What’s next for evidence-based medicine? How do we reconcile it against precision medicine and within our healthcare system? Email me.
Email Dr. Jayne.