Are You Dying For a Diagnosis? – Be Your Own Medical Advocate!

Oscar-winning actor Michael Douglas revealed that he had sought medical attention for a sore throat in the spring of 2010 and went through a litany of doctors and tests.  Since nothing out of the ordinary was found, Douglas vacationed during the summer throughout Europe.  Once he was back in the United States, he returned to his doctors with the same complaint.  This time his doctors diagnosed him with stage four throat cancer.  Since Michael Douglas can arguably afford the best doctors, why was his very grave illness not diagnosed sooner?

Nancy Brooks, currently of Evergreen, Colorado, was only 25 years old when she started to experience symptoms that she knew were just not right. Her St. Petersburg doctor told her she was probably having muscle spasms and suffering from anxiety. Even at complete rest, Nancy continued to have pain in her chest. Nancy visited with another doctor who told her that 25-year-old women do not have heart problems, and that it was either anxiety or all in her head.  Nancy went back to the first doctor and asked for further tests. A heart monitor showed tachycardia and mitral valve prolapse. Finally, Nancy was put under the care of a cardiologist and immediate treatment with medications ensued. Nancy was eventually weaned of the medications, and continues to visit her cardiologist annually.

According to Dr. Jeffrey Trost, MD, Assistant Professor of Medicine and Director of Cardiac Catheterization Lab and Interventional Cardiology, Johns Hopkins Bayview Medical Center, “It is important for non-physicians to understand that physicians are people, too. We are not all-knowing and all-seeing all of the time.  It is unrealistic for patients to expect that every physician will make the correct diagnosis 100% of the time.”

A serious illness demands serious attention. When diagnosed with any illness, serious or not, develop a checklist to include questions regarding your illness, available treatments, and side effects that you may experience. Power up the computer or get to the library and initiate your own research. 

Start a folder to keep copies of relevant information you find on the internet, doctors’ and hospital numbers, and information on support groups and meeting times and locations. Include a small notebook for note-taking and a couple loose-leaf pocket pages or an envelope for prescriptions and business cards.

Be prepared when you walk into a doctor’s office. Have a list of questions and your treatment notebook. You might even consider taking a trusted family member or friend – you can ask the questions and listen, and the trusted friend can take notes for you. The other person may even think of other questions to ask the doctor.

Some questions to get a conversation started with your doctor  –

  • What is it I’ve got, exactly? Ask for pictures and diagrams. If you don’t understand a word or term, ask for more information.
  • Why did this happen to me and could I have prevented this illness or disease? Is it because of genetics, bad diet, poor habits?
  • What are all my treatment options? Drugs, chemo, surgery, physical therapy?
  • What are the side effects of each of the treatments? What can I expect in the form of changes – weight loss, hair loss, loss of appetite, depression, scars, and long-term effects?
  • What about drug side effects and interactions with your current medication?
  • Ask your doctor what course of treatment he/she recommends and why?
  • Have you ever treated anyone with this disease? This question is critical – you don’t want to be the doctor’s first patient with this specific condition.
  • Where will my tests, x-rays, studies, and treatments be conducted? Find out how long tests normally take to be completed – 5 minutes, an hour, four hours?
  • How long is the wait for test results? And if you don’t get the results when promised, what number can you call?
  • How many doctors are involved in the different procedures, and how do they communicate with each other? For example, if your primary care physician orders tests, how do the other doctors get the information? You may want to verify that Doctor #1 sent the information to Doctor #2 before you drive out to the office.
  • Are there support groups and websites that the doctor can recommend for further information?

In addition to asking questions, be prepared to answer questions from your doctor, and to answer them honestly. Clinicians are trained to ask questions to get to the root of the problem. This is not the time to hide what may be embarrassing information like illegal drugs or alcohol abuse or a two-pack a day smoking habit. Don’t forget the over-the-counter meds you may take frequently or occasionally. Your family’s personal history – the fact that high blood pressure, heart disease, or cancer has affected others in your family can be quite critical.

We all know when something is just not right with our own body. What if you don’t have painful symptoms, but you still just don’t feel right. How do you explain that to your doctor? According to Dr. Trost, “You state exactly this – that you don’t feel right.  Doctors are trained to ask questions to figure out exactly what this means.”

Don’t forget about your current medications, including supplements. I used to laugh at my elderly Aunt Agnes when she would show me her index card of medications, until I went to the doctor with her. When the nurse asked did she take any medications, Agnes whipped out her card of meds including their names, dosages, and times per day. Voila! Agnes didn’t have to worry about forgetting a certain medication or repeating a wrong dosage. Jot down your meds on an index card and keep it handy in your medical notebook or folder.

If you are not happy with the care and treatment or if you are not getting the attention and compassion you feel you deserve, change doctors. If a doctor doesn’t have time for you or won’t answer your questions, go elsewhere. Explain to your current doctor that you are not happy with your treatment and that you are looking for another doctor. And explain why. It may not be too late to make corrections in this doctor/patient relationship.

Recently, I posted a comment on my social networking page about waiting for a doctor’s appointment. One friend responded that she once waited seven hours in a doctor’s office with a friend dying of breast cancer because the doctor was “one of the top breast cancer doctors” and because he’d been interviewed on a network television talk show. According to Dr. Trost, “Time allotment varies among all fields of medicine. Dr. Trost further states, “A reasonable wait for a patient to see a doctor is not more than 20-30 minutes.”   

While there may be extenuating circumstances, let’s be fair about appointment times. Consider asking for the first or second appointment of the day or at the very least an early morning appointment. Perhaps your schedule is better suited to the doctor’s first appointment after the office lunch-hour. If you do have to wait for an extended period for your time with the doctor and you are not happy about it, bring it up – “I’m uncomfortable with the wait I had to endure today and was wondering if this is usual or should I expect this every time I come in?”

Some people are content to wait past their appointment times and others are not – gauge your wait-time acceptance quotient against your relationship with your doctor. The ideal situation is to find a doctor who will listen to your concerns and take you seriously. According to Dr. Trost, “The doctor’s ability to listen to you and make you feel as if your concerns are truly heard and appreciated, to make you feel like you are the center of his/her attention when it comes to your problem and make you feel as if he/she cares about your well-being.” Sometimes serious treatments take months or even years – have a doctor by your side that cares about you and will fight for you.

Even though we think we should be #1 on a physician’s favorite patients, he/she does have other patients and other appointments. Find out when your doctor is available for telephone conversations, or if you can send additional questions via email. How often have you gone home from the doctor’s office and thought of additional questions? As you think of more questions, jot them in your notebook. Then when you call or e-mail the doctor or his/her office, your questions can be handled efficiently and with respect for the doctor’s time.

Support groups can shore up your emotional reserves. Ask your doctor for information about support groups in your area. Also, look in the phone book and go on-line and keep your focus on well-known organizations and hospitals. These support organizations have members who are being treated for the same or similar conditions and can lend a sympathetic ear. You may also discover that group members can recommend physicians, other therapy groups, and so on. Support groups can offer a venue for sharing set-backs and triumphs. You may be going through a tough time, but there’s no reason to go it alone.

A FaceBook page can be a great networking tool, especially if you are physically restricted by symptoms, fatigue, or drug side effects. Don’t suffer in isolation. Search for health organizations that have FaceBook pages that provide a venue for networking about your condition. Many large organizations like the American Cancer Society, the American Heart Association, the National Multiple Sclerosis Society, Breast Cancer Awareness, and Cystic Fibrosis, and many others now have FaceBook pages.

It’s an unfortunate fact of life that illness or disease can deposit a bump in your life’s road. It is also a fact of life that sometimes a mistake in diagnosis is made – doctors make thousands of diagnoses over the course of months. It’s not that we shouldn’t trust our doctors – but we should trust our own feelings and instincts.

Emotionally, illness and disease can break down your calm and your resolve. While it’s impossible to distance yourself from your own (or a loved one’s) serious illness, having a plan or checklist can help you get the most out of your doctor’s appointments, learn about possible treatments, and receive efficient follow-ups.  So get busy – prepare, research, start a notebook, join a support group, and connect with others. Be your own medical advocate.

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