Nightmare in the ER

I recently read a newspaper article that made my blood boil. A young woman visited a hospital emergency department for a broken leg, waited 19 hours for treatment and left the hospital without being seen by a physician. And she was billed for the visit! The hospital billed this unfortunate, uninsured woman for the time spent “checking her vitals to assess her level of need.” This same article referenced the case of a man who died while waiting 19 hours to receive care in an emergency room. Two recent reports cite cases of patients dying on emergency room floors while hospital personnel stepped around them. What gives? Have we become so insensitive as a society that we allow people to suffer this way? How can this happen in a nation as evolved as ours?

The answers are not simple. Quality emergency medical care is an elusive commodity in the U.S.  One contributing factor is the lack of universal healthcare, which has a trickle down effect on everyone. Uninsured and underinsured patients have no choice but to use hospital emergency rooms as primary care facilities. This creates a backlog in ER waiting rooms that makes it difficult for those with serious medical emergencies to get the help that they need. Another issue is shorter working hours of primary care physicians. Gone are the days when your family doctor met you at the ER to admit you. Family doctors are spending more time with their own families and many have turned over their after-hours, on-call duties to hospitalists. If you are admitted to the ER, there is a good chance a hospitalist will admit you and your family doctor will follow up with you during business hours. Another problem is the triage system for determining which cases are most critical, sometimes referred to as “fast-track cases.” Triage duty is not a popular choice among nurses for obvious reasons. A triage nurse has to spend an entire shift with confrontational, disgruntled, often vocal patients who feel very lousy. Because this is such a difficult role, it often falls to the nurse with the least seniority. An inexperienced triage nurse may find it difficult to assess emergency patients under the best of circumstances, and will certainly find assessments even more challenging with multiple patients loudly complaining.

Earlier this year, I visited an out-of-state emergency room with stabbing chest pain and difficulty staying conscious. But because my vitals taken by the triage nurse did not qualify me as “fast-track,” I had to wait 6 ½ hours, behind patients who were much more mobile than I. To make matters worse, I had so much trouble staying conscious that I could not sit up in a chair, so my father asked for a place for me to lie down. The ER could not provide a place to lie down, and I had to lie on the floor. Within minutes, a nurse approached me and said, “It is against hospital policy to lie on the floor, you will have to sit up.” I called a local walk-in clinic from the ER and was told that if I had shown up at their facility, I would have been given an EKG, IV fluids (the problem was dehydration), and sent to the ER in an ambulance, in which case I would have been seen by a physician much more quickly. I found this out too late, because the triage nurse had already administered an EKG, for which my insurance provider would not have paid had I left without seeing the ER physician. As it turned out, I was admitted for 24 hours following the long wait. Several “fast-track” patients who came and went (with full mobility) while I sat in the waiting room were not ill or injured severely enough to be admitted. Towards the end of my wait, I witnessed patients yelling at ER staff members and ER staff members yelling back. It was an ugly scene.

When I returned home, the dehydration problem persisted with my blood pressure dropping to 70/40 on numerous occasions, and I was treated with IV fluids at least a dozen more times. But with lessons learned, I developed a better system for receiving treatment. For the next six months, if the faint feeling was mild enough to allow me to sit in a waiting room, I went to the local urgent care clinic, where I was administered fluids even before I saw the doctor. If I had trouble staying conscious, I paged my internist and he admitted me to the local hospital for fluids so that I could lie down quickly and not spend hours in a waiting room.

So what can you do to ensure better emergency medical treatment for you and your family? I have compiled several suggestions, based on my own experience and interviews with emergency department physicians:

     Know your emergency medical treatment options, before you have a medical emergency. Ask around to determine the reputations of any area hospitals and urgent care clinics. Contact local urgent care clinics to find out which services they offer. Find out which hospitals, urgent care clinics and ambulance services are covered under your insurance plan

     Use an urgent care clinic whenever possible.  You will most likely have a shorter wait time, more time with the doctor, and you will be doing your part to help reduce wait time in emergency rooms for those who do not have other options (patients with life-threatening conditions, patients without insurance coverage.)  And urgent care clinics are less expensive, sometimes a fraction of the cost of an ER visit for the same condition. Even if you have generous insurance coverage, it is a good idea to keep costs down, not only for the greater good, but because you never know when you or a family member will have a catastrophic illness that will max out your coverage.

     If your condition is too severe for an urgent care clinic and you need to be seen quickly, call an ambulance. If not, you could go into cardiac arrest waiting for treatment. This may seem like overkill, but better safe than sorry. You only have one body. However, don’t try to use an ambulance for an obviously non-critical condition in an effort to be seen more quickly. EMS will call ahead to triage with your initial vitals and you may be sent to the waiting room if your symptoms are less critical than those of other patients.

      Discuss options with your family doctor ahead of time, before an emergency. Find out if he is available after-hours by page, if he rotates on-call duties with other physicians, or if he refers all patients to a hospitalist. If your primary care physician can call the ER or better yet, meet you there and admit you, then you will receive treatment much sooner. If you have an ongoing problem that requires frequent hospitalizations, find out if your doctor can do a direct admission whenever you have an emergency that will require a hospitalization  

     Have all medical history prepared ahead of time, before an emergency. When you seek emergency care, you will be asked for a list of all medications and dosages, past hospitalizations and surgeries, and any known medical conditions. The worst time to try to prepare this information is when you are in severe pain, struggling to stay conscious, or vomiting or bleeding profusely. My suggestion is to create spreadsheets for your current medications and dosages, past hospitalizations and surgeries and known medical conditions. Keep this information up to date, so that it will be quickly accessible to you or a loved one before heading to the ER or urgent care clinic.

Okay, all of this seems like a lot of work, but the advance preparation can save you a great deal of suffering!

Dealing with Misdiagnosis

Have you ever gone to the doctor suffering from painful or debilitating symptoms, only to be told, “The tests are negative, there is nothing wrong with you,” or worse, “Perhaps we should look at a psychological origin”? Or maybe your doctor says, “I know exactly what it is, take this medication and you will be fine.” When you try the medication, nothing happens and your troubling symptoms remain. 

In the U.S., 40% of us have been incorrectly diagnosed by a medical practitioner. The issue of misdiagnosis has great significance for me, because I lost nearly nine years of my life to debilitating symptoms that could have been treated much sooner with the correct diagnosis. For seven years, I consulted local physicians, as well as practitioners in Arlington, Virginia; Memphis, Tennessee; Pittsburgh, Pennsylvania; and Vero Beach, Florida, and at Mayo Clinic, Johns Hopkins Hospital, Vanderbilt University Hospital and the University of Alabama at Birmingham Hospital. I was diagnosed with everything from “organic mood disorder,” to “suffering from conflict about her role as a Southern woman,” to “depression” to “epilepsy” to “obsessive-compulsive disorder.”

After consulting thirty-seven physicians, I still did not know what was wrong with me. Test after test came back negative. There were a few non-conclusive test results along the way that indicated a problem – blood pressure falling upon standing, severe eye tracking deficit when tested by an occupational therapist, and a positive PET scan of the brain showing possible damage. But what was it and how did it happen? In 1995, I went into the hospital with a bad flare-up of ulcerative colitis with a high fever. I emerged from the hospital six days later with debilitating neurological symptoms that were not present before my hospitalization. From that point on, I did not live a normal life for nearly nine years. I could not work or drive a car, and for a total of about four years, I could not walk into a grocery store to select my own groceries because my brain could not take in stimuli. Any sights, sounds, or motions worsened the dizzy, disoriented feeling that I already had 24/7.

Finally, in February 2002, seven years after the onset of the symptoms, I was diagnosed with an Autonomic Disorder by Dr. Philip Watkins of the Mitral Valve Prolapse and Autonomic Disorders Center in Birmingham, Alabama, just 100 miles from my home. He prescribed a combination of florinef, a blood pressure regulator and Zoloft. Both of these medications increase blood pressure and blood flow to the brain. Within four weeks, I noticed a slight improvement, and six and a half years later, I have regained a large part of my life. I can drive a car up to an hour, up to 60 miles per hour. And I can shop in just about any store! I hope to return to the workforce soon, but right now I am busy writing a book entitled How to Take Charge of Your Own Health.

During the course of researching various topics for my book, I solicited eight hundred physicians to take an online survey. Several survey questions target the issue of misdiagnosis.  Forty-four percent of the physicians surveyed indicated that the biggest barrier to finding the right diagnosis is inadequate patient history. Twenty percent said that premature diagnosis is the biggest barrier, twenty percent blamed limitations imposed by managed care and sixteen percent gave other answers. When asked what patients can do to help themselves when seeking an elusive diagnosis, an overwhelming sixty-six percent of the physicians surveyed chose “Keeping track of history, medical records, tests, and meds” as their answer. In other words, the more information you can offer your doctor, the better.

When you have an elusive diagnosis, the search for answers becomes a full-time job, which is really unfair. It’s a job that doesn’t offer a salary, a job you didn’t want in the first place, and a job you are not physically able to do. But keep in mind you are fighting for your quality of life. And nothing is more important to someone who has been without quality of life for an extended period of time.  For each doctor visit you must fight really hard, and prepare as if you are studying for a college exam or giving a presentation at work. You not only need copies of all lab reports, x-rays and medical records from other physicians, but also your list of current medications, attempted treatments, past hospitalizations and surgeries, and chronic conditions. The more you can encapsulate all the information, the better. Keep in mind that your doctor will have ten minutes at best to review all your information. It should be as concise as possible. During my medical journey and nation-wide tour of medical hospitals, I began keeping all my medical reports in a binder, separated by neon page dividers with the name of the facility, name of the doctor, and the date of service. This system made it easier for doctor to quickly scan my history. It also made it easier for a couple of them to “diagnose” me with Obsessive-Compulsive Disorder!

Your doctor is only part of the solution. He cannot solve the puzzle until you provide him with all the pieces. You have a great deal of power in finding the right diagnosis, although it may not seem like it during such a difficult battle. Your doctor cannot find the correct diagnosis without your help. And your power does not stop with visits to your doctor’s office. The Internet provides a plethora of information, with possible clue buried right under your nose. A great place to start is in a message board or newsgroup for a medical condition that explains at least some of your symptoms. Even if this is not the condition you have, you may meet people online who can offer valuable clues. Or you could try searching each of your symptoms individually in your web browser to see if the same condition appears. Although the Internet can be a valuable tool, keep in mind that it is not a substitute for a licensed physician and that not all information is accurate. Your voice is perhaps your biggest asset when seeking an elusive diagnosis. Tell anyone and everyone what is going on and ask them to spread the word. Somebody out there just might have the answer. This is what happened in my case. A chance conversation with a neighbor ultimately led me to Dr. Watkins and the correct diagnosis and treatment. I now have most of my life back and it would not have happened without that conversation about my symptoms.

If you are suffering from undiagnosed, untreated symptoms, remember that you are your best ally. You’ve got the power!

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