What is Patient-Centered? – Ask a Patient!

A recent article and an accompanying editorial in the Journal of the American Medical Association reveal much of what I believe is both right -- and wrong --- about the direction of medical policy and medical care in these United States.

The article noted reveals that the patient centered medical home, which is the team-based approach of primary care in which primary care practices are paid more to coordinate patient care, does not produce savings or perhaps even significant improvement in the quality of care as was expected.  The editorial implores readers to carefully consider the results and avoid the conclusion that the patient centered medical home is not effective.  The author of the editorial then argues that the patient centered medical home, in order to be more effective, must better identify the really sick people and focus more on them.

I agree with the editorial that there is still promise in the patient centered medical home and that we must find ways to improve the function of that wonderful concept.  I am, however, troubled by the thought that focusing on sicker people, as the editorial suggests, through the patient centered medical home will lead us to the promised land of lower costs and higher quality. It seems like this arguments, and indeed the very structure of the medical homes as implemented, still tend to see people as the sum of their medical risks and illnesses rather than the person who has a life, and who may or may not have an illness. The patient centered medical home, by being focused on a physician’s office, rather than the patient’s home, may be missing the opportunity to try and enter in to a person’s life, even before they feel the need to see a doctor.  I wonder if we have to turn our current paradigm on its head, and focus on those who are not severely sick. To me, it makes more sense that people who are not suffering from diagnosable, treatable medical illness are the ones on which we should focus -- to try to help them avoid getting caught in the medical system that seems to respond to every unhappiness with a blood test, an imaging exam and a prescription.  What I learned while in practice was that most patients who seek medical care do so because:

1. They feel isolated and alone with their discomfort.
2. They are afraid.
3. They are hurting both physically and emotionally; however, the psychic pain is sometimes worse than the physical.

Some of these people have medical illnesses -- from upper respiratory infections to advanced cancer -- but they still come to the doctor for peace of mind and hope as much as they come for cure. When I was in practice in gastroenterology, I saw many, many people with abdominal pain, constipation, nausea and other symptoms. I sent many of them through evaluations that included imaging, endoscopy, and blood tests, even though I suspected that the best way to help them was to watch and wait. I knew, however that their fear and their perceptions of pain were such that watching and waiting would, in their mind, be tantamount to “doing nothing.” Usually the tests were unrevealing; however, they were also often reassured by the tests as that, in their minds, was “doing something.”  I thought that they benefited most by having someone to talk to about their symptoms and their life, but by the time they came to see me, especially as a specialist, they often could not hear me unless I “did something.” Testing became a way to share their concern and to help them feel listened to and less alone. The mindset by the time a person walks into the doctor’s office is that he or she wants a medical intervention, a medical test, a medical therapy -- whether or not the issue is medical, social, financial, cultural or behavioral, because in their mind, it is medical.

To find a way to decrease the over-testing and the overtreatment that is harmful and wasteful, we need to find people before they take that fateful step to visit the doctor. We need to enter their homes and their lives and help them realize that medical science cannot solve all of their problems. In my days in practice, I managed people on home nutritional support.  I found that when I went to people’s homes, I was able to better see into their life and understand how to help them without necessarily running a blood test.  In my current role, as I speak to people on the phone, I am struck by how often even on the phone, when people are in their homes, they are able to open up and talk about topics that in the sterile environment of the doctor’s office are impossible to discuss. 

In order to really foster patient/person-centered care, which should theoretically increase needed care and decrease unnecessary care, we have to ask two questions. They are:

1. Do people want a medical home, and if they do, what do people want from a medical home?
2. Why do people, who presumably do not like to be poked and prodded, do not like to spend money they do not have, and do not like to waste their time, receive -- and often seek out -- unnecessary care?

The answers may be so obvious that we are missing them. Here at Accolade, in our early years, we decided to ask people questions like this, in surveys and in focus groups. We asked what people wanted and needed as they accessed health care and health benefits. We learned people wanted a friend to stand by them. They wanted help through a difficult system, provided by someone they trusted. They wanted the proverbial place where everyone knows their name, even if it was virtual, over a telephone. They wanted a human being who knew them and their family and who understood what their values and concerns were. They really don’t necessarily want to be over-tested, but they wanted assurance that everything possible will be done if they are really sick -- and that the zeal to lower costs wouldn’t leave them sick and even at risk for death.

How to do this? At Accolade we do it with the Accolade Health Assistant®, who, for 60+% of the population we serve, will form a relationship with someone before he or she goes to the doctor. Community outreach programs with community health workers have the potential to help. Sometimes efforts as simple as community social centers with proper staffing can create atmospheres in which people helping people they know, takes the place of that unnecessary and often misguided trip to the doctor. Perhaps telemedicine systems allowing people the safety of talking to the doctor or nurse while they are in their own home.  I don’t expect there to be one answer that is right for everyone, but I do expect that the answer will be based on the power of human connections, more than on a medical model of disease intervention.

In many ways, the challenge to the patient centered medical home is that we really need person- centered holistic homes instead. We need safe places where people in need of support, hope, friendship, and help can turn to when they are in need.-- places to receive the kind of pointed advice and information that they need in order to avoid the risks and costs of being tested, prodded and poked unnecessarily at great expense to themselves and to society in general.