3 Responses

1. Jan Oldenburg

   June 17th, 2008 at 1:41 am

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   I have asthma–episodic asthma. So 95% of the time it’s underground; something I take medication for as a chronic disease management strategy but it’s invisible at work and easy to live with. But 5% of the time it dominates my life. My employer, Kaiser Permanente, and the people I work with are wonderful: understanding, sensitive, concerned. But it’s the little things that make it hard. When I’m in an asthma episode, the little things become major problems. The walk from my car to the building stresses my ability to work once I get in. This year I moved to a closer, more expensive parking spot so that I wouldn’t have to worry about trading with someone for parking the weeks I really can’t walk four blocks into work. But I’m on the opposite side of the floor from the women’s restroom. Normally, those are just steps that I log on my pedometer; when I’m in a bout, they’re agonizing. I cough for 10 minutes after each trip.

   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.

2. Ted Eytan

   June 17th, 2008 at 5:32 pm

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   Jan- What a great example of what we/I can find out if we ask “what does it mean to live and work with this condition” in addition to, “how are the medicines working?”

   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

3. Paulanne Balch

   June 18th, 2008 at 3:48 pm

   3

   As a family physician, I have been using goal setting with my patients for over two years. Thinking of Jan’s example brings to mind all the times, when presented with an ill patient, my training, and NCQA pressure is to use the contact to ‘do everything,’ to not ‘miss something.’ Yet many times I have looked back and found meds, tests ordered, or meds not refilled, largely because I didn’t take the time to hear the patient’s perspective, which, increasingly, has to do with cost and or life circumstances, or beliefs about their health. And, when these circumstances are documented, well intended others, pursuing various health system goals for managment of different health conditions, may disregard patients’ wishes to NOT participate in follow up.

   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.