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An MD’s Suggestions for Effective Advocacy

Dr. Christina Peterson, headache specialist and founder of HEADQuarters Migraine Management and Migraine Survival, commented on the Effective Advocates post with great advice for all of us:

There is no excuse for doctors or other health care providers to be jerks. However, please be aware that under current HIPAA laws we are somewhat restricted regarding how much information we are allowed to release to anyone who is not the patient without the patient’s written permission. If you are in the room, obviously there is a level of implied consent–unless there is reason to suspect an abusive relationship, which we are also obligated by law to report. And…between 1/5 to 1/3 of women reporting to Emergency Departments have been victims of some sort of sexual or domestic violence or abuse. So–it becomes complicated.

In today’s deteriorating health care environment, the Emergency Department has become something of a war zone, inundated by trauma victims. And with the general lack of awareness and poor attitude regarding the headache sufferer, we tend to fare poorly in the Emergency Department and are treated, at best, as a nuisance, and more often, as a drug seeker. This is why I try to give my patients the tools they need to manage their headaches on their own without resorting to Emergency Department treatment unless they have become dehydrated and require IV hydration.

If you do go to an ER, take an advocate who can remain calm but persistent, while keeping these points in mind–and someone who can educate regarding headache/migraine wouldn’t hurt!

Another point: if you think you might be too impaired to call your physician’s office during a headache, and you are going to want a family member to call on your behalf, please sign a consent form for that person to talk to the physician when you are in the office. We really are not trying to be difficult about this–it’s federal law intended to protect your confidentiality.

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What’s Medical, What’s Private?

Since medical privacy rules (aka HIPAA) went into effect, patients have signed form after form saying that our health care providers and pharmacists have told us that they comply with the laws. With restrictions on who can see, know about or be sent our medical information, it seems as if our private medical information is well-protected from prying eyes. “But that depends very much on what you mean by medical, and what you mean by privacy,” maintains Abigail Zuger, MD, in her essay, The Water Cooler, a Font of Good Medicine, which appears in today’s New York Times.

For medicine to shift from treating symptoms or disease to treating whole people, Zuger argues that the social information about patients that was once considered gossip is now relevant to their health care. She writes,

“No longer is a well patient with a sick gallbladder of medical interest for her gallbladder alone…

“Is the gallbladder upset because its owner is eating too much fatty food? Are those deep fried onion ring binges caused by unhappiness in the home? Is there a possibility of domestic violence? Should a social worker and a lawyer be called as well as a surgeon? The scans show only the inflamed gallbladder, but medical caretakers are now encouraged to see beyond the scans.

“Sharing information from every perspective has become the way of the future. In medical school, students are now encouraged to link disparate medical and social details into a cohesive story, a veritable novel about each patient.”

If talking about the gory details of my life means that my health problems are better attended to, I’ll provide refreshments for that meeting. How do you all feel about your medical privacy after reading Zuger’s essay? Please leave a comment or e-mail me.