Cells or selves?

I am both excited and worried about the recent enthusiasm for precision medicine (PM)     

I am excited because it offers such amazing promise for a truly revolutionary new paradigm in health care. The speed at which new knowledge and technology are showing practical application is breathtaking: 3-D printing, genomics, big data, mobile apps, nanotechnology. Scientists, technologists and futurists are deservedly proud of how far they have come and optimistic about how fast and far we will go. There is now the prospect of knowing which one in four patients with DCIS needs treatment, which patient with a PSA of 7.5 will benefit from early and aggressive treatment, or which patient with depression will respond to which medication. These  are seductive beyond description for clinician like myself, who are well aware that even our best treatments are often broad-based shotgun approaches which benefit a small minority. LDCT benefits 3 of 21 patients with lung cancer and 1 of 300+ patients screened. Statins for secondary prevention (their most powerful benefit) benefit only one in three patients who take them. Colonoscopy saves 1 life for every 1250 patients screened. Knowing not just how to treat a disease, but WHO would benefit from WHICH treatment could be the biggest change in medicine since the invention of the patient!

Everyone seems on board. Not just scientists and futurists like Mesko, butpayorsinstitutions, the media, and even government.  There may be doubters and skeptics, but even they don’t doubt that it is coming.  Yes, we may not know yet exactly what precision medicine will look like, but it is clearly not going to be stopped.  That said, I believe we should think very seriously about steering it.  Which brings me to why I am worried. 

This is not my first rodeo. I began my life in medicine in the fall of 1969. Things come and go, fashions flash by leaving spent money and smashed dreams in their wake. The truth changes. I have seen many other very promising changes, all based on solid principles and fueled by the best intentions, become corrupted or co-opted, impairing efficacy and efficiency, and ultimately undermining the role of the patient in patient-care. EBM and MU are two instructive examples.]

Evidence based medicine (EBM) evolved to solve a serious problem. Patients were getting treatment based too often on the preferences and habits of their clinicians, without incorporating the best available data or the patient’s preferences. The intent was to replace irrational clinician-based variability with rational variability driven by melding the best evidence with the specifics and preferences of the individual patient. While Evidence based medicine is certainly better than Eminence based medicine, it has evolved into governance by guidelines. Instead of starting the conversation with the guidelines, the guidelines is used to stop the conversation. Worse, the guidelines have been co-opted by all manner of institutions and used as cookie-cutter recipes, standardizing treatment so that every patient is treated the same. Instead of fostering patient-centered variations in care, EBM is too often used to standardize care around a mediocre mean regardless of individual need. Why did this happen? The answer is complex, but a large piece is that it was not driven by patients.

Meaningful Use (MU) began as an attempt to identify markers of quality, so incentives could be developed to change the behavior of clinicians and health systems by reimbursing for value rather than volume. The intent is good, but quality is hard to define, meaningful and accurate metrics are challenging and expensive to track, and incentives are relatively impotent in a system designed with an entirely different goal. The result has been extra cost, extra work, lots of meaningless behavior change, but precious little evidence that clinical quality has improved. Changing the map does not change the territory (the reification fallacy). Again, this was a process to change patient care that was not driven by patients.

I worry that the same thing will happen with precision medicine.

It will be essential to remember that, although precision medicine allows us to differentiate the biology of one patient from that of another, the patient is not just a collection of cells. The patient is an autonomous and unique being, a person, a self. Each individual whole person is far more - and far more complex - than the sum of the few parts we can measure in our laboratories or describe (let alone understand) with our science and data.  Our Selves may need cells to exist, but our ‘Selfness’ is something apart from that, something defined not by our enzyme ratios or drug metabolism patterns, but by our histories, experiences and memories, by our relationships, by our values and preferences, by our personal goals, and by our individual social contexts.

Osler knew that it is more important to know the patient who has the disease than the disease the patient has. Good clinicians have always understood that they treat patients, not pathologies. This concept informed some of our jokes in our earliest training years;  the operation was a success, but the patient died, and the need to make sure the patient was in perfect electrolyte balance when they died.  

As medicine becomes more powerful, it is not just the ability to do good that is enhanced, but also the opportunities to do harm. We must not let an unethical reliance on precision trump the the autonomy of the person. Just as we don’t want evidence or quality metrics to (unethically) replace the patient as the focus of care, we do not want precision to be the new paternalistic overlord. Our treatments must be precisely adapted, not just to the science of the disease, but also to the preferences, values, and goals of the individual patient.  

Here is where science stops being the best tool; communication and collaboration in a humanistic relationship come to the fore and empathy is more useful than information. We have to stop talking and telling, and start listening and hearing. We have to simultaneously help the patient use precision medicine and protect the patient from being controlled by precision medicine. Medicine is only valuable to patients if it meets their needs, and only patients can determine their needs and goals. Patients should always be able to drive, whether the vehicle is EBM, MU, or PM.

Precision medicine must focus on the Self, not just on cells. 

 


 

Links to more on this topic::