That's a good one word summary of our health care system. Things get lost. People are lost. Money is lost. People are lost in the system. Lives are lost. I am frequently at a loss. Opportunities are lost. Plus, it may be a good idea to strand whoever's responsible for this mess on a desert island. Yes, lost is a good description for health care.
At the core, however, the greatest loss is that of the patient. They are who the system is designed to save. They are the ones for whom the words "health" and "care" are supposed to apply. Yet most patients, in my opinion, feel lost. They don't know where they are in regards to their health. They don't know where to go, or what to do.
It used to be that people came to me for a "prescription" of care: meaning that they wanted me to tell them what to do. Medicine was a mystery known only to a few who had access to the information and so was practiced behind the doors of doctors' offices and hospitals. People who wanted to have more detailed explanations were considered "bad patients," as they were prone to second-guess decisions in areas they were not trained to understand. "Good patients" would listen to what the doctor recommended and follow the instructions. "Good patients" were "compliant."
Two things changed this picture forever: the information available to all on the internet, and social networking, which allowed people to discuss health care issues outside of the medical setting. The role of doctor went from being a benevolent monarch to that of a coach or advisor. The responsibility for care has shifted from the doctor to the patient, who uses the doctors' expertise to make the best decisions for themselves. I think this is a good development for both patients and doctors, as I don't want responsibility for my patients' decisions; I just want to give them the best tools possible to make those decisions and tell them what decisions they need to be making.
And that's where the plot thickens. It's where the plane crash happens.
I've been thinking about this a lot lately. My patients are being bombarded with information and opinions on where they should go, from Dr. Oz talking about their thyroid, their friend who got their colon detoxified, the celebrity who eats only gluten-free vegan humanely treated plants, to Arbonne, who now (I am not making this up) tell people they should "detoxify the liver." (I never knew that the organ responsible for detoxifying the body needed itself to be detoxified. Why don't we just stop toxing in the first place?) They come to me for guidance and information, but I have my own limitations:
- I don't have access to their information - labs and procedures not ordered by me are usually not available, and many of the specialists have stopped sending me the notes about their care for the patient.
- I don't have time to explain the different options - I am paid by the visit, so the more time I spend with my patients, the less I get paid.
- I am spending an increasing amount of my time working to comply with insurance and government requirements, forcing me to put more information into the record that I don't use, and giving me even less time to get the big picture (much less share it with the patient).
My patients are being put down in the middle of a jungle full of terrible consequences for wrong decisions. I am supposed to be their guide, the one who knows the way to safety; but instead of helping them find the way out, I am shoving a map at them and leaving their fate in their own hands. If they don't ask me, I don't tell them. If they don't know they need a colonoscopy due to their family history, or that the stent they had placed in their heart did not permanently fix the problem (a patient really thought that was the case in a recent visit), then they don't ask; and most patients who don't ask questions do not get answers.
My pondering on this whole issue has led me to conclude that patients need a GPS device for their medical care. They need something that gives them an image of the landscape and tells of the safe routes and perilous places. What is that GPS device? A care plan. Somehow patients need to be armed not just with medications and directions for their immediate problems, but a larger view of their medical locale.
- They need to know the state of their health.
- They need to know their risk factors.
- They need to know what lies on the road ahead: what tests will need to be done and how they can avoid pitfalls.
- They need to know where they've been: past tests, office visits, procedure results, or previous illnesses will put their current situation in sharper focus.
- They need to know where there are gaps in the information.
- They need to know why they should take the medicine, see the consultant, or take the test.
But our system stands squarely in the way of this. As much as I would like to use our EMR to synthesize a patient's information into a clear care plan, I am penalized for taking the time to do that. I am much better paid to see more patients or to meet the "meaningful use" criteria (which I am growing to loathe - more on that later).
Many of those involved in our health care system do not want patients to have this information to make good decisions, as they would likely spend less time in the hospital, get fewer unproven tests done, do more prevention of disease, reduce duplicate testing, and spend less time in the doctors office asking what they should already know: where the heck they are. Hospitals, ancillary services, drug companies, device manufacturers, and even we doctors would lose a huge source of revenue with such an informed patient. Sure, there would still be enough patients ignoring the information and making bad decisions to keep us in business, but it would be a whole different world.
Would it be paradise? What, you mean like a tropical island? Don't go there.