It’s scary to just attend to what people come for, just focus on their goals for the visit, with the time, money, and priorities they have that day. If we did, maybe we both would likely feel more successful, with a shared plan for next steps.

I find it very hard to start with goals, when I haven’t uncovered, addressed, and updated all the contributing barriers (ie, the medical problems). Medicine attracts, nurtures and rewards the compulsive ‘overdoers.’ Yet, in overdoing, do we abuse, or enable, but in the end diminish the patient’s ability to care for themselves? If we focused more on what people are ready to do, with their time, money, and priorities, we do less, spend less and recognize that the center of gravity is not US, not MEDICINE, but is the person who comes to us in the midst of their lives, for help. We do not do their care when they leave our office. Best we ask them what they can and are ready to do for themselves NOW, and work with them to arrange their lives accordingly (ie helping the patient work with the employer in the example above, to loosen up on the bathroom breaks, or helping patients think through solutions like a closer parking place, so they can keep working when their chronic conditions are active.) Then, the ‘medical problem list’ would emerge according the patient’s revelations, not because of some pursuit of diagnosis, or NCQA rule book… are we ready for that scary possibility? Can we agree to trust that patients really do know what they need? Can we truly share, rather than assume, responsibility for, their care? This means we have to change how we do what we do in medicine.

If we are going to do patient centered care, we have to change, and those of us in this profession will need A LOT of SUPPORT in getting there. TO be patient centered, we really to have to believe patients are their only and own best caregivers, and allign our time, priorities, and resources accordingly. We are then less ‘authorities,’ posturing truth, and more participants, guides, in people’s lives. Are we ready? Are our credentialling, and reviewing institutions ready? When this shift happens…it is truly why most of us went into family medicine: to share the journey of life with those who come to us.

I think it is useful to know what the gaps are for patients (and their employers) beyond the health care part of things so we empower people in the right places when we design patient access / consumer connectivity in health care. It’s powerful to say, “I use a pedometer, but I don’t need the steps when I can’t breathe.”

We want a patient advisor to help with the planning of this project with CHCF just because of stories like this. If there are more out there, please post and thanks again,

Ted

I’m lucky enough that I can pay for conveniences, that I work in a supportive atmosphere, and that my illness is episodic at best so we can all pretend it doesn’t exist most of the time. Even so, I’m embarrassed to ask for the accomodations that I sporadically need. I can’t imagine what it must be like to have to ask for accomodations in an atmosphere that isn’t supportive; where asking alone puts your job at risk.

I think I’m part of the fairly hidden cost of chronic disease. I don’t need accomodation all of the time and I’m not covered by any laws prohibiting discrimination, and my workplace is willing to accomodate me if only I ask–but even I would appreciate it if I didn’t have to ask for help.