For relevant background for this blog post – check out previous posts.
Ode to the Absurdities of the Modern Health Care System: Navigating Care for Children with Complex Needs
Below are musings about confusion in care navigation, which I have personally experienced. You will see echoes of everything I have described in this blog. The musings include conversations, texts, emails, and everything in between listed by typical issues and encounters in navigating complex care in today’s health care system.
Appointment Reminders & Instructions
Ok, all set, your virtual appointment will be at 3pm on May 1.
Scheduling Confirmation (robotic voice on voicemail):
This is a message to confirm your virtual appointment will be at 3pm on May 1 with Dr. López.
Your appointment is at 3pm with Dr. Smith on May 1 in Boston at 1 MLK Blvd. Please arrive 15 minutes prior to your appointment.
Please fill out the COVID19 screening prior to your appointment on May 1.
Wait, isn’t this a virtual appointment?
Jargon and Abbreviations
You have an appointment at COD in Nephrology on September 10 to discuss the results of a renal ultrasound, blood work, and urinalysis. Reply YES to confirm. Reply NO to cancel. Reply STOP to opt-out.
Racking your brain… what’s COD? We had a kidney ultrasound and he peed in a cup. Did we get the right exams done?
Paperwork for Services
Dear Lindsay Rosenfeld: Please fill out these forms to ensure continued care for your children in their skilled facility placement.
Mouth drops open in disbelief. I’m pretty sure they’re in the next room napping…
Phone Call for Information
Phone Inquiry [Organization that Helps Families with Kids with Complex Needs]:
Organization (automated menu): Hello, how can we help you today? Please Select 1 for directions, 2 for hours, 3 for a department menu, 4 for dial by name, 0 for help.
Me: (selects 0) Hi, I am looking to talk with someone about paperwork I received which doesn’t make sense.
Organization (friendly voice): Sure, I’ll transfer you.
Phone picks up.
Me: Hi, I just opened a thick packet of mail from the State about my children’s out-of-home placement (e.g. skilled facility)… but, they’re in the next room napping. I’m not sure what to do with these forms. They clearly say we’ll lose benefits if we don’t return them.
Organization: This happens all the time. The systems don’t talk. Fill out the forms, even if your children live at home with you.
I illogically complete the forms that don’t seem applicable at all to my family.
She was right. State program participation continues.
Phone Call for Scheduling
Scheduling Voicemail Message:
We need to reschedule next week’s pulmonary function tests due to a new change in the schedule.
Carefully crafted plans made long ago considering work, school and home schedules are thrown into disarray, again. The ricochet of schedule change begins.
Online Health Portal:
Online Health Portal Message:
Your test results are ready. Click here to see the results.
85 clicks into the search at the given link… Where is it? What was it I was looking for?
Interpreting Lab Results
Specimen Type: Ova and Parasite Exam
Result: Neg or Flora
Specimen Type: Urine Culture
Result: Check Result
Report Status: Final
Blood Gas – p02 Venous
53.1 mmHg Reference Range: 30.0 mmHg – 50.0 mmHg OUT OF RANGE
86.9 mmHg Reference Range: 30.0 mmHg – 50.0 mmHg OUT OF RANGE
40.4 mmHg Reference Range: 10.0 mmHg – 30.0 mmHg OUT OF RANGE
44.8 mmHg Reference Range: 10.0 mmHg – 30.0 mmHg OUT OF RANGE
What does any of this mean? Is anything wrong or not?
In-Person Office Visits
Nurse: I see he’s on fexofenadine-pseudoephedrine daily.
Me: Is there another name for that medicine?
Nurse: I’m not sure.
Me: Let me google it… Oh, yes, Allegra. He takes Allegra every day for his allergies.
Aaaaaaahhhh! He has so many medications. I can barely even remember the names I know them by. Everyone uses a different name for the same thing!
Cardiologist: The EKG raises some questions. This wave here (points with finger at what looks like a sketch drawing of ocean waves) is different than we typically see. We’ll want to do a 24-hour monitor. This could be a precursor to or indicator of a condition we’d be concerned about.
Me: Huh? [Attempt to ask clarifying questions.]
But what does it show? What do you mean? What do we have to do?
Physician 1: Nothing atypical here.
Physician 2: This is atypical.
Physician 3: This isn’t atypical enough.
Symptoms are present, but they can’t be explained.
So, what now? How is this figured out? Who figures it out?