life stories

the center of the universe is the brain

Never Give Up; Never Surrender

The complexity of health care in the United States makes even the most mundane procedure seem daunting. Wandering hospital halls without a GPS makes one realize they are in “the system.” Break free.

Easy to say, not easy to do. If you or a loved one is in crisis, it’s the only way to get the care you need. And it’s the only way we as a culture can change the system. All our whining, bitching and complaining is meaningless. We must advocate. One patient, one doctor, one administrator at a time.

What I realized in trying to get the appropriate care for Mom was that the first response the doctors had was what was safe within the system.

Don’t kick and scream. Put your emotions on hold. This challenge is one that requires you to be perfectly clear. There is no instruction manual. But here are some suggestions:

1. Always remain respectful and always believe that the person is there because they care and want to make a difference. Whether you are dealing with someone who has been kind or someone who’s been an ass, treat them with respect. Otherwise your self-respect will erode.

2. Be prepared to repeat medical history and current concerns over and over and over. Be clear and try to be as succinct as possible but also be thorough.

3. Educate yourself. Don’t think you can get your medical degree through Google but do use online source to inform yourself. If you are diagnosed with an illness, check symptoms and options for treatment. But do not dismiss the advice of your doctor. If you have questions or concerns, talk to them. Call them. Insist on being seen. Be persistent.

4. Be persistent. Make sure your doctor knows who you are. I discovered my mother’s primary care physician had other patients with the same name!

5. Remember your doctor sees probably 16 or more patients every day. While you are focused on one case – yours – your doctor is juggling multitudes of illness, referrals, sniffles, chronic diseases, suspected child abuse, unexpected pregnancies, hypochondriacs, undiagnosable mysteries… That doesn’t mean you should take pity; just remember that you have to remind him of your concerns.

The one thing that continues to baffle me is how slowly “the system” moves. Emergency and triage people are the stars. They jump in. But patients spend very little time with them. After emergency care, the patient is sucked into a system that seems to thrive on waiting.

We are all part of “the system” and there is enough blame to go around. Generally I blame insurance companies. They are responsible to their shareholders, not to the patients.

Hand-in-hand with insurance companies are health care administrators. These are the people who have forgotten their purpose beyond budget and marketing and billable services.

Doctors are the most powerful people within the system. I’m certain that most doctors truly care about the well-being of their patients. However, how many of them have stood up and said, “No.” No to time limits on office visits. No to limitations placed on nursing the requires nurses to get a doctor’s order to provide care for a patient. No to system rules that prevent a family from having access to needed care to help a loved one.

The second most powerful group inside the system is nurses. Across the country there is a shortage of nurses (except, from what I understand, Portland, OR). Many of them are unionized. Unions tend to deal with more concrete issues but they could be used for basic organization. Nurses have the foundation to stand up and say, “Stop. It’s time the system get out of the way and allow us to care for our patients.”

I confess. I am part of the system. It’s easy to forget that, working at Alaska Children’s Services. We’re a small organization and I don’t have to deal with billing or coding or regulations. I hope that my being there alters the system in some positive way. I hope that my advocacy for Mom’s well-being has supported someone’s care-giving.


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