Thursday, November 18, 2010

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.          


  1. Can't believe you don't have any comments on this yet.

    This is a dimension of empowerment that we don't discuss enough: simply knowing that we can speak up and say "This isn't working." But then there's the question of what to do when the docs say, "But that's all we have."

    Question: What happens today when someone googles post-partum depression? Will they find the help those women ultimately found?

  2. Any kind of permanent change requires a holistic understanding of the issue at the psychological, behavioral, cultural, and institutional level and the change needs to be initiated at all levels.

    As you rightly pointed out, the role of doctors and patients is changing as they co-create knowledge, which means we need a new mindset or cultural shift in how we get healthcare. And there is opportunity for institutions including marketers to step in and provide innovative products and services to support this change.
    MotherWoman is working at the social and cultural levels which impacts mother's psychological health.

    I see this shift as being connected with re-defining healthcare, where we proactively take charge of our health and not only cure diseases. For instance, if we were taught breathing and meditation exercises in childhood, we may be better equipped to deal with life's and health challenges later. There are scientific studies to show the effect of breath work and meditation on depression, so if we practiced meditation we may be reducing the occurrence of depression or at least its impact.

    Do you think healthcare providers are moving towards a more holistic and pro active approach to maintaining long term health?

  3. Many people don't know they can truly speak up or even question what their healthcare provider is saying. Old school thinking is that diagnosis & treatment is told to the patient (a 1 way street) , not a negotiation or individualized based on patient's situation.

    What about the elderly and the disabled? I feel for them bc I know what I have been through as a patient & I have learned that I must become more educated, to ask questions and be more empowered.

    The dance, if done properly, benefits everyone. It is a culture shift - that's for sure and to enable the dance to occur, more of us must speak up and educate and engage others.

    Ultimately, a patient knows their body the best and they need to take charge and find the right partner to dance with.

    Great insight into this topic!

  4. Marya, thank you so much for this insightful blog on the necessity of mothers and providers to partner in the care of mothers, especially when in the heart of postpartum emotional complications. The story of the mother at our MotherWoman breakfast is one of 100's that we have heard from women over the years. They are in a desperate situation and are in great need of immediate care and attention. Of course, when any of us are in physical/mental crisis it is the hardest time to advocate for ourselves, and yet we and our families must be supported to do this and have the tools necessary.

    Our providers are good people who care and yet they often do not have the tools (training, resources, network) that they need to offer mothers REAL options and care.

    We at MotherWoman are working on this issue on all fronts. We have created the Western Mass Pregnancy and Postpartum Support Coalition which includes ALL providers who are working with mothers to create a comprehensive service plan for mothers. This includes screening so that mothers in need are identified early, resource and referral guides so physicans and mothers can find care and support, training for professionals so that they are equipped with the info they need to care for women, and lastly our MotherWoman Postpartum Support Groups which many mothers find to be the most significant element of the care they receive.

    There are many online resources and a mother and her family can find their way to them easily. If you google postpartum depression you will invariably find two of the leading resources. Postpartum Support International ( will connect a mother with local support in her community, online support, warm lines and emergency lines, support for dad and family, etc.

    Another valuable resource is This is a wonderful resource for families and physicians. Physicans and other providers will find excellent info, free CME's, latest research, etc. Families will find good information.

    At MotherWoman, we know that ppd is the leading complication of childbirth and we are committed to ensuring that mothers receive the care they need during this critical time. We welcome you joining us in our work. The part you play with mother's is critical.

    You can contact me at or go to our website at

  5. So, @Murzee, you gonna answer my question?? I truly don't know.

    Somebody the other day tweeted that there are three aspects to empowerment, but I didn't write down what they are. One has to do with giving people permission to act (or letting them know they have permission), another is giving people the *ability* to act, and I don't remember the third. :(

    I mean, if we're gonna get serious about this, we need to know what happens when someone tries.

  6. Marya,

    Excellent summary of MotherWoman's power and an excellent point, made well, about self-advocacy. I have a friend who runs a blog called The Wellness Bitch (easy to find on Google!)—she is detailing her own journey of self-advocacy in health, and as her name suggests, taking a tough love approach in getting others to do the same.

    Lisa Duggan

  7. I want to thank everyone for a lively discussion of this topic. As I spend so much time obsessing about our methods and the resulting evidence, it is natural for me to be concerned about what happens in the office between a clinician and a patient vis-a-vis how this evidence (or lack thereof) gets used (and sometimes abused).

    There is clearly a lot of common ground between the concerns addressed by MotherWoman and the e-patient movement. I hope we can turn this interaction into an ongoing conversation.