Patient empowerment: A tango worth dancing

I like to poke fun at real estate agents (please, forgive me if you are one, it is all in good fun). My experience has been that, despite what I describe as my preferences, they always end up showing me what they have, even if it does not bear the remotest resemblance to what I need. This holds true for politicians, with this cardinal rule: always answer the question you want to answer, rather than the one being asked. Well, now that I think about it, it is also true for modern medicine. Here is how.

This morning I attended the annual fundraising breakfast for an organization that started locally, but is spreading nationally and even internationally. The group is MotherWoman, and it arose from a realization that women's post-partum needs were not being met. At the regional level, women suffering post-partum depression had no resources available to them, and the local clinicians were not clued in to the problem to the point where they could offer targeted help. And although the organization has grown and matured around issues of parenting in general, they are still known for their robust community outreach to help manage PPD.

So, every year they have a fundraising breakfast, and every year I set a limit for the sum I will write in that box on the check, and every year, after hearing inspirational stories of real women and families, I go over this limit. This year was no different. The speakers were fantastic -- passionate, committed, authentic. Sharon Lerner, the journalist and author of The War on Moms, was a featured speaker. But the most touching of all was the talk by a young mother, followed by one by her husband, about their family's struggle with profound dark and shattering PPD. Aside form the fact that there was not a dry eye in the audience, the story had yet another effect, on me specifically: it clarified for me the importance of empowering mothers, fathers, families and all patients to advocate for themselves. The story was one of missed opportunities to listen to, to connect with, to help someone whose life was suddenly too heavy to carry. Instead of offering individual care and support, the woman was prescribed a one-size fit-all fix, which she was not willing to accept. Yet the healthcare system failed to offer a viable alternative. Just as in the case of the real estate agent and the politician, the property shown and the question answered were not this woman's. Instead, they were generic solutions driven by our increasingly widget-oriented approach to healthcare.

She and her family did eventually get the help they needed, not the least of which came from MotherWoman, and she is well on her way out of the jungle of PPD. And just as this family made clear, over and over again I hear people tell me that they do not blame their healthcare providers, they do not consider them evil, and they actually appreciate the efforts made by them on their behalf. But these efforts fall short when we are forced to measure individuals with a population-based yardstick, leaving both the patients and the physicians frustrated.

The way we derive evidence for our practices needs to change. There are many underutilized tools already available to help us understand inter-individual variations, and there are many more that need to be developed and used. But as in any relationship, patients need to learn to speak up and make their needs heard. We need to develop a common vocabulary so that clinicians can become aware of our needs and be sensitive to them.

As I tell my children when they bicker and come to me complaining about each other, it takes two to tango. Physicians are busier than ever, we live in the era of the incredible shrinking appointment, and the proliferation of gadgetry and other pressures on the doctors' attention and time is crushing. Just as we are not afraid to let the real estate agent know to change course, just as we demand that politicians answer our questions, so in this the patients need to learn to advocate for themselves. This is surely a culture shift. Yet this is one dance that is worth performing well.

Update 11/19/2010:
I encourage you to go here to read Sharon Lerner's remarks.