We recently came across “The Patient’s Playbook” by Leslie Michelson. The book’s focus is how to get the best medical care, especially if you have a complicated medical situation.
Brain Support Network super-volunteer Denise Dagan read the book and passed along some notes on the second part of the book called “Experts and Emergencies.” See below.
One highlight from her notes is this list of “tools” for getting a proper diagnosis and treatment plan from the best practitioner possible:
#1 – choosingwisely.org – Choosing Wisely includes lists of questions patients should ask about tests, medications, and procedures.
#2 – dartmouthatlas.org – Dartmouth Atlas provides the rates of use of different medical procedures and compares those rates from city to city.
#3 – use websites such as the National Institutes of Health (NIH), the Mayo Clinic, and WebMD to learn more about your diagnosis. Then, turn to PubMed (pubmed.gov), a database of medical articles maintained by the US National Library of Medicine at the NIH, to narrow the field to the top specialists.
Part II of the Patient’s Playbook, Experts and Emergencies, focuses on getting a proper diagnosis and treatment plan from the best practitioner possible.
Over-treatment can be as dangerous as under-treatment. There are human reasons (remember, doctors are human, too) why both happen and Michelson gives us a couple tools to help determine whether we are suffering from either, and how to avoid both.
Tool #1: www.choosingwisely.org The Choosing Wisely lists were created by the American Board of Internal Medicine in collaboration with a half million physicians from the major specialty societies (pediatrics, oncology, etc) to create questions patients should ask about certain types of tests, medicines, and procedures. These lists cover wide-ranging topics, but focus on the most egregiously overused interventions.
Tool #2: www.dartmouthatlas.org The Dartmouth Atlas of Health Care was created by the Dartmouth Institute for Health Policy and Clinical Practice. It captures the rates of use of different medical procedures and compares those rates from city to city. For example, in the 2012 report elective surgical procedures among Medicare recipients found patients in Casper, WY were seven times more likely to undergo back surgery than those in Honolulu, HI. [The numbers do need to be taken in context, however, as Hawaii has a shortage of orthopedic surgeons.]
Unless you are in a life-threatening, emergency situation, do not start invasive treatment until you reach an evidence-based diagnosis. First, partner with your primary care physician to get to the right realm of medicine. Then, see specialists who can confirm or rule out the disease in question. After reaching a diagnosis you feel confident about, insist on having informed discussions with experts in your illness (even 2nd and 3rd opinions) about pros and cons of different treatment approaches.
Chapter 6, “How to Find and Interview the Medical Experts You Need,” explains you can’t just Google, “Best ‘insert specialist here’ bay area.” You get 858,000 results, all vying for your business. Instead, search websites like the National Institutes of Health (NIH), the Mayo Clinic, and WebMD to learn more about your diagnosis. Then, turn to PubMed (www.pubmed.gov), a database of medical articles maintained by the US National Library of Medicine at the NIH, to narrow the field to the top specialists. The same names will keep popping up in the article bylines. Click on the first name (usually the principal researcher) to see every article written by that person. Once you have a few names at this level of specialty, you are in the no-mistake zone. Any of them will do a fine job. When you have a complicated illness, it’s worthwhile to consult with a major institution, at least for an expert opinion. Michelson even includes some opening comments to use when contacting the specialists you’d like to consult with, and some questions to ask when deciding which is the right one to carry out your treatment plan.
In actuality, with the expansion of internet resources by organizations dedicated to research and education for a specific disorder, you can Google, “best movement disorder specialist parkinson’s disease,” and find search software by zip code from both the National Parkinson’s Foundation Centers of Excellence, and Partners in Parkinson’s Movement Disorder Specialist Finder. Continuing with Mr. Michelson’s method will further narrow the field of researchers and practitioners to cutting edge surgeons in deep brain stimulation, for example.
Lastly, in Chapter 7, Emergency Room 101, Michelson gives us some guidelines for deciding between an urgent care and the ER. He explains when it is better to drive yourself to the ER or call 911, and which ER to go to (some specialize in trauma, some aren’t equipped to deal with infants, for example). He recommends knowing the emergency rooms in your area so you can ask to be taken to the one that seems most appropriate because transferring hospitals is incredibly difficult and can result in your insurance not covering either your hospitalization(s) or treatment. If you find yourself in the wrong hospital, the author gives tips for motivating the first hospital to a) be cooperative in making records available for you to get a second opinion, and b) transfer you to another hospital for treatment, if that is your preference.
He also has some advice for minimizing mistakes due to communication breakdowns, starting with having your basic medical information on your person at all times (as mentioned early on in the book), and reminding us that we are in charge during a hospitalization. We should ensure staff explain their actions before proceeding and complain to the head nurse when something is done improperly. If you’re at a teaching hospital you will probably have students coming to your bedside, and that’s fine, but if you’re dealing with anything more complex than the flu or a sprain, be sure to ask to be examined by the attending physician. There’s no need to be rude about it. You’re the consumer. They’re probably going to give you a customer satisfaction survey upon discharge and, at the end of the day, the hospital needs to be profitable.
Coming soon: Part III, What to Do When Serious Illness Strikes.