Please allow me to coin a new term:
Medical Homelessness - Not having access to a consistent familiar medical setting. Not having a care location where one is known or where the medical information is accurate.
I think medical homelessness is one of the main problems in our system.
Given the nature of care in the US, most patients are required to be their own homes. They serve as the conduit where medical information from one provider goes to another. They are the prime decision-makers in their care - often making these decisions without understanding or assistance from those who do understand. They are the only ones with the "big picture" of their health, yet they don't really know enough to say if that picture is good or bad. They are helpless and vulnerable to sales pitches from drug companies, device manufacturers, insurance companies, and unfamiliar doctors.
I am not talking about every patient in our system, but I am talking about a large portion (perhaps the majority). Some may spin this as patient empowerment, but unfortunately much of it is a case of patient abandonment. People are left to fend for themselves in a confusing, complex, and hostile system, and unfortunately many of their lives depend on their ability to manage this.
Sadly, most Americans have come to accept what is as what is best. They don't know what not being homeless would look like, so they don't push to find a home.
Reasons for the Medically Homeless
There are a number of reasons that people have no medical home, with many places to lay the blame. The center of the storm, however, is the state of primary care.
Primary care physicians are the logical choice for the medical home. People know their PCP over many years, and the general nature of primary care physicians' training allows them to oversee the overall care of the patient. Most PCP's don't rely on procedures to make their living, so the act of meeting with the patient, organizing their information, and discussing a plan is natural in the PCP's exam room. But several things have made it difficult or even impossible for primary care physicians to provide an adequate medical home:
1. Being a medical home takes time
To gather and organize the patient information is sometimes very complex. Discussing the big picture and explaining why certain things need to be done takes a commitment from the PCP. The problem is, there are no billing codes to cover this procedure. There is no procedure of medical information oversight that is covered my most insurance plans. Yet doing so takes more time than it takes for an ENT to put tubes in a person's ear (which takes about 5 minutes), and more thought than it takes to remove a wart from someone's skin. These other procedures are paid for, but coordinating care is not.
Yes, there is the "preventive physical" that is paid for by many insurers, but there is nowhere in the required documentation for this regarding care oversight. Plus, a "physical" requires that the patient be present, but care coordination can be done in their absence. The money paid for a physical is for "doing something" (i.e. examining and ordering tests), not for organizing and planning.
Given that PCP's are among the lowest paid physicians, for them to take the time to do a big job without pay is not only bad business, it is a surefire way to go out of business quickly.
2. Insurance companies pretend to be the medical home
Insurance companies have moved from the insurance business, and now are in the "care management" business as well. This is convenient, because the management of care involves deciding which tests are paid for and which are not. The problem is, like the PCP, the insurance company must often decide between what is best for the patient and what is best for business. Is it better for all of their patients to get colonoscopies, more frequent diabetes visits, and more aggressive cholesterol lowering? Perhaps these reap a benefit in the long-run, but they cost a lot of money up front. Shareholders tend not to think in the long-run.
This wrestling match between doctor, patient, and insurance company over control is a major part of what goes on in a medical office. The reason insurance companies have such bad reputations is that this conflict of interest between business and patient care makes their motives always suspect.
3. Good information is hard to come by
Not only is it time-consuming to gather comprehensive medical information on a patient, it is often impossible. Between HIPAA, which greatly increases the work it takes to get medical information, and the horrible informatics infrastructure we have, much of a patients' record is often inaccessible. In 2009, I get far less communication from consultants and hospitals than I did in 1995. Why? There is no easy way to communicate, and there is no motivation to do so.
Specialists, hospitals, and labs used to rely on referrals from physicians - referrals that depended on the PCP's opinion of the specialist. If one of these treated my patient badly or did not communicate with me, they'd lose all of my business. Now they are chosen by insurance companies, who make a deal to get the best price possible. There is hence far less reason for them to give me good service, with the end result: non-communication.
4. Primary care is increasingly scarce
Even if all of the other things were in place, the shortage of primary care physicians would still leave many people medically homeless. There are not enough PCP's, and those who are still there are being deluged with patients. The more the system shifts to primary care, the larger this problem will become. If the system paid better for doctors to spend time organizing records, there would be fewer available appointments. This could be compensated for by using a "care team," but that is yet one more added expense.
Plus, the addition of new payments for care oversight would undoubtedly come with many strings attached. Would they need to follow up on any lab that was ordered and had not come back? Would they be responsible for mammograms ordered by the GYN, or lipids ordered by the cardiologist? Very few offices are equipped to do this without a major time investment.
Fixing Medical Homelessness
There is no easy fix to this, but one of the first steps is for people to be aware there is a problem in the first place. People don't demand high quality care because they don't realize they are not getting it. And people don't know they are getting it because they don't know how good care could be. The first step would be to show it working well somewhere.
Obviously reform of the payment system as well as promotion of primary care is critical. I would say that if PCP's got a substantial increase in reimbursement, there may be some 50-something doctors who retired from practice due to the current situation who may reconsider. There are actually a substantial number of PCP's who have retired rather than deal with our system that is hostile to primary care.
Whatever the solution, having a medical home for everyone should be at the top of reform agenda. Disjointed care is expensive. Disorganization leads to mistakes. Dumping the responsibility on patients creates fear and powerlessness.
We need to find the road that brings us home.