When Serious Illness Strikes

My journey through the complexities of the American medical system began in 1998 when my 2-year old daughter was diagnosed with an inoperable brainstem tumor.  We were immediately forced to make life-and-death decisions during a time of intense fear and vulnerability, with no experience upon which to draw.  I felt adrift in an unknown universe without a lifeline.

Any serious diagnosis thrusts patients and their families into an unfamiliar world of doctors, tests and treatment options.  They must simultaneously find information, make decisions under pressure, seek the best medical care, cope with family changes, and deal with insurance, financial, employment, caregiver or school issues.

Here are my suggestions as you begin the journey through illness.

1. Get smart fast.

Become a savvy, health literate advocate. Gather good information using only credible sources.  National advocacy groups often have excellent information, such as the Alzheimer’s Association.  For cancer research, start with the National Cancer Institute, and the American Society of Clinical Oncology. An excellent site is UptoDate, a clinical database with many free patient articles.  The National Library of Medicine offers PubMed for academic research, articles and much more.

Beware of Dr. Google.  When evaluating health information on the internet, think about: Who operates the website? Who is responsible for the website’s content? Who funds the website? How does the website maintain your privacy? Where do they get their information? How current is the information on the website? Does the website have a linking policy? What does your doctor say?

Learn the vocabulary of your disease.  This will help you understand what medical professionals tell you and position you to be a better advocate for yourself.  Doctors respect that.

2. Get organized.

Take names and take notes from the very start.  It doesn’t matter if you use a computer program or a small notebook.  Develop a system that works for you.  Keep a chronology of conversations and doctor visits, diagnostic and lab test results, symptoms, treatment plans/options, medications and any reactions to them.  Collect business cards of your providers and keep them in a plastic sleeve.

Prepare a medical history and medication list.  You may be seeing many doctors or specialists.  Type up a clear, concise medical history.  Ask the nurse to put it in your chart and hand a copy to the doctor.  You’ll still have to fill out their forms, but they might pay more attention to your document than the form.  Keep an up-to-date medication list and bring it to every visit.

Read and understand your insurance policy.  Learn the definitions and differences between co-pays, deductibles, co-insurance, pre-authorization, out-of-network, formulary tiers, denials, appeals and all the rest.  Ask for an insurance case manager for complicated situations.  Always check to see whether the medical professional you want to use participates in your insurance.

3. Stand your ground, nicely.

Make friends and learn names.  You will need the help of front office staff, aides, nurses, and the billing office.  Especially in a big institution, it helps to know and ask for specific people.

Come prepared.  Bring questions to your doctor visits but don’t dump 12 inches of Google research on their desk.  Bring a notetaker if possible.  Be mindful of the physician’s time but don’t let yourself get rushed out of the office if you haven’t finished.

 Get second or third opinions.  Don’t feel stuck with the treatment team that first saw or diagnosed you.  Ask for a full range of treatment options and research them yourself as well.  You are the center of the medical team you will be building.  Make sure you are satisfied with your doctors’ credentials, experience and bedside manner.  Verify that the doctor accepts your insurance.

Ask about medications or tests that you are being prescribed and why.  There may be alternatives, like a cheaper generic medication.  Or maybe you don’t need another MRI so soon.  Remember, doctors have no idea or concern about what things cost you, your insurance or Medicare.  Their “defensive medicine” can cost you a fortune.

4.  Always follow-up.

Never assume things will work as they should.  If someone tells you he or she will do something – consult with a colleague, order a test, fax a document, call you with results, talk to your insurance, phone in a prescription – make sure to follow up yourself.  All too often, these things fail to happen as promised, with sometimes serious consequences.

Schedule appointments as early as possible.  Many specialists are booked months in advance.  You can ask to be put on a cancellation list and call frequently to check for unexpected openings.  This is where the “making friends” advice can help.

Continue your medical education.  Medical breakthroughs happen every day.  Once you have identified your credible sources, check regularly for new information.  Google Alerts are one useful tool that will send updates on the topics you request.

Author: Elisabeth Schuler, Founder and CEO Patient Navigator, LLC.  Please cite this source if content is referenced.

Posted in Advocacy and Patient Education, Cancer, Caregivers, Chronic Disease, Elder Care, Medical Management, Other health issues, Pain and Palliative Care, Patient Centered Care, Problem Solving, Roadmaps
Patient Navigator LLC does not diagnose, treat clients or recommend a treatment plan. We are not a substitute for the consultation and care of doctors and other health care providers. We provide you with research and information to use with your doctors. Always check with your health care team before making medical decisions.

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