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Dec 31 2002

Take time to advocate

 Categories:  Fondly, Carolyn Comments:   0 comments  Print Friendly Version  |   Share this item
Dear W:

I am so glad to hear that you and B did so well on your exams! That reflects not only your intelligence, but also your commitment to learning, organization, and support of each other. Congratulations! I am also really happy that your relationship is going so well, especially despite the pressures of your schooling and this profession! B is a special person and you two seem to have something that could last. I have enjoyed talking with you both by phone and e-mail but continue to hope you will come visit soon!

W, my little patient C died this month, and losing one doesn't ever seem to get easier. I wanted to tell you her story to encourage you to "Take Time to Advocate." This tiny 16-month-old girl had a mitochondrial disorder, which not only blocked her development but also caused her to have horrible seizures. Her seizures persisted despite all the best medications, and I finally recommended a vagal nerve stimulator (VNS). Although VNS has been helpful to many patients of various ages, C's insurance company considered it "experimental" since C was so young. Despite the data I provided to support its safety, efficacy, and appropriateness for this child, the insurance company denied coverage. We put it in anyway. Cyberonics donated the device, and pediatric neurosurgeon MH donated his expertise. So did the hospital, pediatrician, and I. And guess what? Her seizures improved dramatically, allowing her and her parents some meaningful time together. Still, the insurance
company would not acknowledge this as a valid treatment! Of course, she ultimately succumbed anyway, but she died quietly in her parents' arms and not in a seizure. Even though we failed to get her insurance company to pay for the treatment, all of our advocating for this child was a success because we helped her get relief from terrifying symptoms and to die peacefully.

To "advocate" is "to speak for" (ad + vocare), to support, to plead the cause of another. Physicians have often been advocates for safety, public health, and social justice around the world. In this country, collective and individual physician efforts in the political arena and in public education have helped effect the passage of laws pertaining to speed limits, car seats, water quality, housing safety, child abuse, and many other important issues. Physicians have also long advocated for patients simply by taking care of them kindly and competently.

More recently, we have had to learn to advocate for patients for financial coverage of their visits, medications, and procedures. We have each had to make many phone calls and write many letters to insurance companies on behalf of our patients. Be sure to take time to do this, but do it as quickly and efficiently as possible. The insurance companies may hope you won't take the time, and there are time and financial pressures not to, but you know you should. You still know what is best for your patient, and if you take a firm stand the insurance companies will often yield. Once during residency, your mother and I had a patient who needed a hemispherectomy for seizure control, and the insurance company felt that it was "experimental." After contesting this vigorously, our team finally got an authorization from the insurance company with the qualification that they would not pay if he ever needed another hemispherectomy!

Physician advocacy also must involve some participation in government. Get involved in your regional medical societies and the AMA, and you will find that it is quite enjoyable to interact with other physicians and advocate together. Also, write or call your government representatives and tell them about your own and your patients' battles for coverage, timely payment, and good health in general. Federal and state senators and representatives are all on line: see www.senate.gov; www.house.gov; and www.northcarolina.gov.

The president elect of our county medical society recently called my attention to a publication that is very relevant to this concept of physician advocacy. The Charter on Medical Professionalism is the product of a large collaborative effort and articulates the shared principles of healers around the world. This encouraging credo affirms our beliefs in the primacy of patient welfare, respect for patient autonomy, and the importance of social justice. Like Thomas Jefferson said of the American Declaration of Independence, the document did not aim at creating but rather expressing principles held by a people. In these changing times, we must hold fast to these timeless values. (If you would like to read the Charter, go to www.annals.org, then select Past Issues, 2002, Number 3, February 5, 2002.)

Because of our managed care, political, and other difficulties, physicians may be tempted to forsake our role in promoting public health and safety. Nevertheless, your voice as a physician is trusted and respected in the community, and you should make it heard. The first time you speak at your local school board or county commissioners meeting, you will be surprised at the respect you are afforded. The board members will certainly listen and consider your points carefully, even if they may not vote as you recommended!

Your mother just called me and told me of B's accident this morning. Oh, W! I am so sorry to hear of this. I hope they will be able to save her foot. I hope you know how much she needs you now, as an advocate certainly, but mostly as her partner. Oh, my young friend, do you have enough support? Should I come?

Fondly,
Carolyn

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