Sunday, July 19, 2009

The Empowered Patient

This is a little different entry for me. I met a different kind of person the other day and she made a great impression on me. I admire people who find a way make the most of a situation, those who do not cower in the corner. I admire people who, when faced with adversity, say, “what do I do” instead of “Woe is me.” Not everyone can do it, which is what makes it admirable. I met just such a person on Friday. Her name is Julia Hallisy.

I never met Julia before Friday. I knew of here because we have many friends and acquaintances in common. We went to the same small girls high school, though she is younger than I. Our kids are roughly the same ages and went to rival schools, Many people have told me I should meet her. I have been meaning to contact her, but life is always in crises mode around here and I never got to it. I was delighted last week when she contacted me and I understand now why people told us to connect. We talked for almost two hours over a cup of tea at Starbucks. When I left I felt encouraged and energized.

Julia has been through life’s most difficult circumstance. In 2000, after years of cancer treatments and complications, Julia’s 10-year-old daughter Kate lost her battle and passed away. Julia and her family were devastated and grieved for Kate. They did not let her struggle be in vain, however. Instead of letting it defeat her, as it would many, Julia managed to find meaning in the experience and used it to help others.

In the years her daughter received treatment, Julia watched and learned. She made notes and asked questions. Julia learned nuances of hospital care, how and where corners are cut that effect patient care. She learned the hard way how infections are spread, the havoc they wreak, and how easily they can be avoided. She learned when to get a second opinion and how to keep health insurers on task. She learned not only the questions to ask, but also the identity and title of the person who could answer them. Then she did the best thing possible. She wrote down everything she learned and published a book called The Empowered Patient.

Navigating the health care system is complicated and frightening. I have been doing it very well for 15 years and I still find it overwhelming. Moreover, it is necessary only at the most emotionally charged moments of our life, when someone we love is ill and we are least able to face the challenges the current medical system presents. The Empowered Patient is a book that everyone should have at home. When you or a loved one go into the hospital or need ongoing outpatient medical treatment, this book provides pragmatic advice about what to do and how to get it done. This is not the time to try to figure things out. If you have this book on hand, you do not have to. The Empowered Patient provides hands on advice for patients, their family members and anyone who cares for them. It is a road map for health care. You can find the straight answer, or at least the right questions to ask.

Everyone is dealt a hand of cards; some get great hands, some do not. That is not the end of the story, however, unless you let it be. You cannot fold just because you have a bad hand. You have to play the hand to stay in the game. Especially when the game is life and death. Sometimes the way you play the hand makes all the difference.

Check out www.theempoweredpatient.com or go to amazon.com and see for yourself what an amazing thing this woman had done with the hand she was dealt. She did not fold. And we all benefit from that.

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