It’s tough to navigate the health care system when you’re elderly. Because privacy trumps the exchange of information and the fact that society lives longer, by the time you’re 85, you’ve seen a plethora of health care providers that don’t communicate with or even know about one another. To live longer and prosper at that age, you’ll need to see a whole bunch more that don’t or can’t communicate with one another. And your future 85-year-old self, will be in charge of managing all of this information.
As an outpatient speech therapist, I tend to only add to the confusion as I have to give my elderly patients more information to process. Often times my spiel goes something like this:
“Your wife needs a swallowing test over at the hospital called a Modified Barium Swallow. But you’ll first have to get a prescription from your doctor for this test (hand him the handy prescription with all of the information that he can give to his wife’s doctor to sign) and then call over to radiology (give him a handout that gives all of these steps in a written form, while pointing to the phone number of radiology that I’ve highlighted in yellow) to make the appointment because we don’t do those tests here. And in the meantime, you’ll need to thicken your wife’s liquids to a nectar consistency (explain how a nectar differs from a thin liquid) with a thickener that you can buy from your local pharmacist (hand him a few papers with information about thickener brands, recipes, how to thicken liquids, the difference between a mechanical soft and regular solid diet). Once your wife has the test done, if the inpatient speech therapist at the hospital feels that she would benefit from swallowing therapy, you can come back here for that. Or course, you’ll need another prescription for swallowing therapy at that time. Do you have any questions?”
At which point the gentleman, being a gentleman will smile, take all the information, maybe ask a few questions and then go home and make his wife some hot tea without thickening it.
Being an outpatient therapist I’ll never know what happens to them after they leave. If on the off chance they do get the tests completed and come back, I pray they had it done at the Frederick Memorial Hospital (FMH) as I’m only privy to medical information within that system. In a few minutes I can look up the patient and read the MBS results online. Otherwise, they’ll need to bring the test results with them. Of course, I’m happy to call and get the records faxed – that is if they can remember the name of the facility and/or the professionals they spoke with and hopefully they signed a release of information form before they left. Keeping in mind that I’m talking about the elderly, not all of my patients have this information stored in their memory banks.
Please understand that I’m not mocking the elderly. I’m 42 and honestly can’t tell you the name of my gynecologist. I know the name of the practice and that I go to the Frederick office, but I’d have to look him up online and read through the names to tell you his for sure. His initial’s are LB and he has a cool, Polish sounding name, something ending in ski or sky. He’s got a mustache, he’s super personable and engaged to be married, if that helps.
Now imagine me at 85.
So that’s problem number one. Problem number two is the lack of power balance in the the elderly couples I meet. I find that one is greatly responsible for the other either out of necessity (a husband taking care of his wife with advanced dementia) or habit (a wife that’s always been “in charge” is now the gate keeper of her husband’s medical information as well) or an age differential (a middle aged woman married to an elderly gentleman).
What concerns me is that these couples are at risk of becoming like the businessmen in an old but very funny Computer Associates commercial:
I have a few elderly Dan’s that are the only ones in the family that know the specifics of their wife’s diet. The kids are busy with high pressure jobs and their own kids and they don’t fully understand Mom’s risk of getting pneumonia due to her silent aspiration problem. My fear is that before Dan can educate his grown children, he gets impaled by a falling icicle on the way to Christmas dinner and mom is left alone at the table with a full glass of eggnog.
If Dan goes down, how will the remaining spouse that’s ill, manage? Maybe Dan’s lucky and has some adult children to lean on, but what if they live across the country? Or they’re idiots? Or they’re simply too busy to help out because they are sandwiched between both parents and children that need their assistance?
There’s got to be a better way to coordinate all of this information. I’ve noticed that some health systems as well as private business offer medical concierge services. Cleveland Clinic will help you coordinate your care and arrangements if you’re visiting them from out of town. Apparently, the locals are on their own. If you have some extra cash, Potomac Concierge here outside of DC besides providing personal assistant services, will help clients navigate the health care system, making appointments, and even assisting with medical claims and insurance forms. And of course, insurers are offering these services, but its more about helping you understand your benefits and less about the exchange of information between professionals.
As our population gets older and lives longer I’m guessing medical concierge services will be popping up more and more. I imagine it wont be long before someone creates a web portal where patients can upload information and health care providers, with permission, can download whatever information they need. It’ll be like Google Docs for real doctors and not documents.
But until then, you might want to step in and do yourself and your parents a huge favor and get involved. This Christmas, the best gift you can give the elderly family members in your life is to be their health care back up. Their Bright Storage Software if you will. Set up a time, sit down and write down the names, phone numbers, fax numbers and addresses of their health care providers. Have them sign whatever HIPAA papers necessary to give you access to their medical information. Find out the specialists they’re scheduled to see, the follow up appointment they need to make, and the aftercare recommendation they need to follow. Know what pharmacist they use. Find out which medications they take. Be invested in their health and wellness and get involved by getting informed.
This same advice goes for adult siblings of one remaining elderly parent. Just because your Mom or Dad can still live alone and manage day-to-day activities, doesn’t mean that they can manage all of this fluctuating information. Or that what they manage for themselves independently today, wont drastically change in 6 months. All it takes it one undetected UTI to allow significant confusion to set in and you’ll be wishing that you had gotten this information while your parent was alert and oriented.
I realize that you’re busy – but you need to realize that it’s a lot less work to be proactive with grandma while she’s cognizant and able to tell you everything you need to know to manage her care. And once you know, don’t be like Dan. Tell someone else in the family. You never know when a metaphorical file cabinet is going to come out of nowhere. Be ready for it by filling your own personal file cabinet with the information you need to be an advocate if need be.