Friday, March 20, 2009

Medical news can get twisted

Medical emergencies don't discriminate. It doesn't matter, who you are or what you do. It doesn't matter, if you are rich or poor. It doesn't matter, if you are famous or a regular Joe. We are all the same. We are all vulnerable to the crisis.

While celebrities may face scrutiny from the mainstream media or gossip sites, everyday people face scrutiny from sometimes tougher critics such as Aunt Mae or their neighbor Bob. The tragic death of Natasha Richardson made me think of how information gets confused during a medical crisis.

I didn't learn of her death until late on the evening of March 18, but my morning began with grim headlines about her condition including a notice that she was already dead and others indicating she was brain dead.

The headlines, the corrections, the innuendos made me mad. It wasn't my journalism background that raised my anger; it was my background as a caregiver. While most will not deal with misinformation on the global level that Richardson's family experienced, they will experience misinformation on a local and more personal level from their own families and their own communities.

When Jimmy had his stroke -- in that first hour -- my family and his made calls to family members and friends. We essentially said, "It's something really bad, but we don't know anything yet. They are running tests."

The doctors didn't know exactly what had happened to Jimmy yet and I certainly didn't. I was processing the information I had received. I knew the news was grim, but there was not enough news in the beginning to even determine how I should feel. I couldn't gauge the facts. It took a few days for it all to digest.

I knew I did not want to disturb my twin sister Tracy that night, because at seven months pregnant she didn't need to know. She could sleep through the night. As we received more dire reports, Tracy and her husband David were called. They joined us in a special waiting room outside of the larger Intensive Care Unit's waiting room.

The next morning -- still with very little information -- I asked Tracy to call my office and tell my co-workers the news. I couldn't talk to anyone just yet. "They already had heard something," Tracy said when she returned from making the call.

In small towns, news travels fast. My friend Patti said someone had already called the office asking for information on what had happened to Jimmy. She didn't know. It was my first and very fast lesson about medical information: You can't control it.

It's like that gossip game you play in school. You whisper one thing to the person next to you. When it returns to you, it is something completely different.

In Jimmy's case, the news was being spread out of concern, but it wasn't always correct. I learned to be exact with information. I only shared theories and ideas with a handful of people, so the information didn't get spread around as fact. If necessary, I would repeat the information -- several times.

A key task after Jimmy's brain stem stroke was to be informed. I did my best to keep everyone else informed too, but my priority was Jimmy.

The delivery of medical information has changed over the years, which can be difficult for family members. You just can't call up the hospital anymore to find out how Cousin John is doing. With federal rules such as HIPAA or the Health Insurance Portability and Accountability Act, hospitals have become stricter with medical information.

I saw both sides of the spectrum of the HIPAA law -- extreme enforcement and facilities that sometimes would make you wonder, if they knew what HIPAA was. During a time when Jimmy was stuck in a hospital 100 miles away from me, the phone was my only source for daily updates. A nurse insisted once that she could not provide information over the phone. Another hospital released information about Jimmy being placed on a ventilator to a family member over the phone, prior to the action being taken.

Whether it was a HIPAA issue or a neighbor spreading good-intentioned misinformation about Jimmy, I gradually learned to pick my battles. I argued with hospital staffs where necessary and shrugged off the misinformed neighbor.

I made an effort to give people information through a column I wrote while working at The News Observer in Blue Ridge, Ga. or in person. Honestly, I probably gave too much information when people asked, "How's Jimmy doing? or "What's new?" Thankfully, many patiently sat through my long winded response. It was therapeutic just to talk.

I'm sure Richardson's family doesn't care about the incorrect headlines and anonymous sources right now. They have a heavier burden. They have to deal with the sudden loss of a loved one. There are no words to console them after such a tragic accident. Hopefully, they will be allowed to grieve in private.

1 comment:

  1. It's always easier being an outsider looking in to judge a situation. Other people seem to know a better way to take care of things when they only have partial information. All those facts just get in the way. Ha!

    I hope the Richardsons get a chance to grieve in private, too.

    Hey, it's really cool that you have a twin. I always wanted one of those. It sounds like you are close friends as well as sisters.


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