Best Results Organizing

Last week, we talked about how essential it is to get all your ducks in a row long before you experience a medical emergency. Having the information you’ll need (whom you can call, where to go, etc.) to get you quick assistance and that first responders will need (about pre-existing medical conditions, allergies, current prescriptions) to begin treatment, builds the foundation for medical experts to give you the care you require. That’s life-saving organization.

Once you arrive at the hospital, information will fly around quickly, and aside from the insurance paperwork you’ll fill out for the hospital’s benefit, little data will be in paper form for your benefit. Today, we’ll look at some of some of the best ways to gather the information to ensure that you can be your own patient advocate.

LOG EVERYTHING

Paper Doll is an impatient patient, so I’ve learned not to sit idly while awaiting tests or meds scheduled for a particular time. But in order to advocate on your own behalf (or that of a loved one), you have to track all the information you can. The best tools to allow you to do this?  A legal pad and a pen. 

Why so old school? That fabulous laptop or smart phone or tablet on which you take notes for everything else in your life faces two troubling constraints. First, you may run out of juice before you run out of ER wait-time; second, if you’re dependent on the web, you may be disappointed to find neither cellphone signal nor Wi-Fi (free or otherwise) in your emergency room or even your hospital room.

Legal pads, on the other hand, allow you to take real-time notes linearly, require no batteries, can be flipped over to the reverse in the unlikely event that you fill all the page fronts before being assigned a room, and replacement pens are easier to come by than computer-compatible chargers and a free electrical outlet. (You definitely do not want to unplug any of the machinery in an ER or hospital room without permission.*)

Right now, you’re thinking “But Paper Doll, if I’m in the ER, I’m probably in pain. I could be panicking. How can I possibly know, let alone remember, what to write down? If my child or some other loved one is in anguish, how can I stop to write about what’s going on?”

Excellent question.

Obviously, if your ER visit involves agonizing or painful experiences, you’re not going to have the desire, dexterity, or diligence to write down what’s happening. That’s why it’s so important to have someone with you in the Emergency Room and when you’re first admitted. That’s also why it’s so important, as noted last week, to think carefully about who will take you to the hospital.

As for what you can do for a loved one, know that collecting information is probably one of the most beneficial things you can to do help the patient. In some cases, it’s not even safe for you to offer ice chips, but acting as their patient advocate, their eyes and ears and medical secretary when they can’t do so themselves, is an invaluable service you can provide.

So, what should you note?

• Write down the name (and position) of every person who comes in to “do” something to you.

In most hospitals, each staffer wears an official badge saying something like “Dr. Carter– Emergency Physician” or “Kiki–Patient Transport Specialist.”

If badges are flipped backward, ask them to identify themselves. Case in point:  A young woman came into my ER “curtain area” and started asking me questions about my insurance and trying to verify my Social Security number. She was wearing jeans and a fleece jacket and no discernible identification. I asked her, politely, who she was and could she show me her identification badge. To her credit, she apologized for having it covered up. (Paper Doll figures that if you’re wearing a hospital gown that leaves little to the imagination, the hospital staffers should at least have to show their ID!)

• Write down what they tell you they THINK has happened. 

If you have a broken arm, your diagnosis will be fairly obvious to you. However, if you’ve come in with symptoms that could indicate any of a number of conditions, especially ones which will require more testing to verify, ask them to explain the possible diagnoses. This will help you ask better questions and better understand why certain tests are performed. It will also help if/when you talk to your medical circle. (See below.)

• Write down what they tell you is GOING to happen.

If a resident or attending tells you that you’ll be undergoing tests, being hospitalized, having an IV inserted, or anything else, ask them if these orders have been/will be written, and when they believe the action will take place. This doesn’t guarantee anything will happen according to plan, but it will help guide your actions regarding whether you send your loved one to the cafeteria or if you will have time to place some phone calls.

• Write down the names of the medications, the conditions, the tests…

Get the details of any orders, including specific test/med names. This information is useful when trying to understand your treatment (again, when talking with your medical circle), but will also be helpful down the road when you are reviewing your itemized hospital bill. If you know what orders/treatments are planned, and which actually take place, you’ll be able to note any discrepancies later on.

Medical professionals are generally excellent, but they are also human. Being alert and aware (as much as one can be when emotions are heightened in such situations), and organizing/recording information, can help you make sure that everyone is on the same page.

During my ER visit, after I felt a significant time had passed, I asked the nurse to find out what was the delay in having my ultrasound. She stated that no ultrasound had been ordered. I was able to flip through my notes and find that at 2:45 p.m. Dr. Looks-Too-Young-To-Be-A-Resident stated the orders had been placed for an ultrasound, and ask the nurse could she either check the orders again or ask said resident to pop back in for a second. (Note: Paper Doll asked really nicely.) Magically, a patient transport person arrived within three minutes to whisk me off for that very same ultrasound.

Hospitals are busy places; sometimes instructions are given verbally and take time to be transferred to written or digital status. I’m not advising you to bug the doctors.  But if you or your spouse-turned-patient-advocate can keep abreast of what’s allegedly supposed to happen, it’s more likely things will go according to plan.

• Write down the time anyone tells you anything, and when they tell you things may/should happen.

There’s a clock in every ER curtain area, for reasons too dismal to discuss. If you’ve watched ER or Grey’s Anatomy, you know why. At one point, I was told that a particular medicine would be given at a particular time, and that I’d receive a blood test at another specific time, and the times between them were somewhat important. The nurses were incredibly efficient during my stay, but once I noticed that more than a half an hour had passed since I should have experienced the oh-so-lovely blood test, I did ask specifically about the explanations the doctor had given regarding timing.

Paper Doll has a ridiculously, annoyingly good memory. However, an emergency room experience (let alone the tests and medicines) can have a dizzying effect on both the patient and his/her loved ones. When you or the person you’re attending is undergoing the emergency, keeping a log of every person with whom you have an important interaction is a good way to keep your idle hands (and brain) busy doing something useful. You’ll experience less anxiety if you have a linear sense of what is happening/has happened, and you won’t have to worry about whether you’ve forgotten or misunderstood something.

Of course, you can skip noting the comings-and-goings of cleaning staff (unless they unplug your IV) or the nutrition department (even though you’ll be expected to eat breakfast before 7 a.m., lunch at 11 a.m. and dinner at, I kid you not, 3:55 p.m.), but that legal pad can otherwise be a rich source of information and a way to get a handle on everything you’re hearing. It also lets the hospital know that you and your loved ones are really alert to patient care, and assuming you are kind and polite in every interaction, they’ll be happy to help keep you informed. So ask, ask, and ask again!

• Ask about your test results — what do they mean?
  
• Ask about your diagnosis.
• Ask about your prognosis. How might this effect your life short-term and long-term?
• Ask about what you should/shouldn’t do while in the hospital and upon release.
• Ask when your symptoms (if any) should subside and what you can (and cannot) do to ameliorate the situation.
• Ask about anything that is not clear. Write it down. Read it back.

Seriously. This is not the time to be embarrassed about not understanding a medical term or the reason why something is done. The more you understand, the better you can adhere to instructions. You’re not a robot, and you will be far more inclined and able to follow instructions that you comprehend fully.

YOUR MEDICAL CIRCLE

All of the foregoing helps you organize information during the emergency portion of your ER/hospital visit. Later, you’ll be surfing the web and getting anecdotes from friends who have had (or know someone who’s had) similar experiences.

Paper Doll trusts you that you will only take medical advice from your own physician!  That said, it’s helpful to have your own medical circle.

Last week, after I proposed that you collect information regarding who you’d call in an emergency, it occurred to me that you’ll also want a list of people you can call after a medical emergency. Brainstorm names of people you know with medical experience — who not only may have more time to chat with you, but who know you well enough to explain things in a way that works.

For example, I remembered that my acupuncturist was also a nurse, but didn’t recall that a dear client’s wife (residing just around the corner), currently a pharmaceutical salesperson, was formerly an intensive care nurse. Two college friends are physicians (a pediatrician and a child psychiatrist — certainly helpful for when I act like a cranky toddler), and Paper Mommy has collected a lifetime of friends who happen to be in the medical profession.

I encourage you to make a list of everyone you know — relatives, friends, siblings and spouses of friends, pals on Twitter and Facebook — anyone who is or has been a:

• doctor
• nurse
• physician’s assistant
• pharmacist
• physical therapist

The point of this is not to get medical advice, per se, but to acquire comfort and guidance from someone who has the time and patience to sympathize with your boo-boos.

Store this list with your other organized medical records, a topic which we’ll be discussing over the next few weeks.

Stay healthy!

*The film Sparks was directed by a friend with whom Paper Doll went to graduate school.  I’m pleasantly amazed that my paper-related blog has finally given me an opportunity to reference the short film…even if it did require a stint in the hospital to yield the inspiration.