If you've wondered why I've been under the radar lately, look no further than my odyssey of medical maladies; in addition to my ongoing struggle with POTS, this year I've had: a kidney infection, shingles, pneumonia, a pulmonary embolism, and four blood transfusions. Since I’m a numbers person, I downloaded my claims data from my insurer to get a better idea of how much time I’ve wasted in the healthcare system since January 2014.

Useful Visits

This last year I had 56 outpatient doctor visits, 20 emergency room visits, and spent 54 days inpatient. But how many of these visits were useful? As you can see in the table below, not many.

Total Visits Useful Visits Useful Visits Useless Visits
Outpatient
Cardiology 7 3 43% 57%
Endocrinology 1 1 100% 0%
Gastroenterology 6 2 33% 67%
Hematology 2 1 50% 50%
Neurology 1 0 0% 100%
Ophthalmology 1 1 100% 0%
Pain Specialist 8 3 38% 63%
Primary Care 15 2 13% 87%
Psychology 11 2 18% 82%
Rheumatology 4 0 0% 100%
56 16 29% 71%
Inpatient
Emergency Room 20 9 45% 55%
Hospitalizations 9 8 89% 11%
Hospital Days 54 10 19% 81%
Ambulance 7 3 43% 57%

I used the following definitions of ‘useful’:

  • Outpatient visits were ‘useful’ if it resulted in a change to my treatment or I underwent a test/treatment. Appointments consisting of prescription refills without dose changes, advice I already knew, or second requests for the same thing were counted as useless visits.
  • ER Visits qualified as ‘useful’ if they resulted in a new diagnosis or ended in a necessary hospitalization. Since there's been a bit of twitter back and forth on this point - the reason some ER visits aren't useful (or are even harmful) is usually for one of two reasons: 1. They refuse to manage my pain because I "have pain medications at home" or 2. I have to make multiple visits for the same reason in a short time frame (for my last blood transfusion I went to the ER three times in the same week before they transfused. At the time of the first ER visit I had a HgB of 8.3 that had dropped from 9.3 in two days. They made me wait until it hit 7.1 before transfusing, despite me being symptomatic during the first ER visit and this being the fourth time this year we've done this song and dance routine.). 
  • Hospitalizations were designated as useful if they were unavoidable. One of the hospitalizations for nausea/vomiting may have been unnecessary.
  • Hospital Days included a test or treatment; days where the only treatment was saline and Zofran do not count as useful.

Time Wasted

Here I looked at how long it takes to schedule an appointment, wait in the waiting room, fill out paperwork, wait for nursing, discuss the case with the student/intern, and consult with the physician responsible for my care by specialty.

Average Visit Breakdown (In Minutes)
Outpatient Sched Wait Rm Pprwk RN Student Consult Visit Total
Cardiology 15 50 10 10 5 10 100
Endocrinology 0 15 5 15 0 5 40
Gastroenterology 15 120 5 10 5 5 160
Hematology 120 15 10 10 5 10 170
Neurology 30 10 0 0 0 5 45
Ophthalmology 0 20 10 0 0 30 60
Pain Specialist 15 50 5 10 15 2 97
Primary Care 20 30 10 10 5 15 90
Psychology 15 60 5 0 5 45 130
Rheumatology 20 120 10 10 5 5 170
Inpatient Wait Rm Pprwk Waiting RN Student Consult Visit Total
Emergency Room 180 15 240 15 15 10 475
Hospital Days 30 15 1320 60 30 5 1460
Ambulance 15 15 30 0 0 0 60

Some Observations:

  • The fastest experience was with a neurologist who had me in and out of their office in 15 minutes flat; unfortunately he just told me to come back in six months to see if I spontaneously got better (after waiting six months for an appointment).
  • The most egregious offenders here are GI, Psychology, and Rheumatology, all of which have, on average, three hour wait times as they routinely forget I’m physically in the office waiting for them and/or cancel my appointment without calling me.
  • My current pain specialist sees me, on average, for 2 minutes per visit, having fourth year medical students examine me and practice giving an (unnecessary) exam. I have to see her each month to get my prescription due to policies and legal issues with prescribing. In calculating usefulness I included student interview time as useful for pain as it's being used to supplement physician time.   
  • On average I wait 20 hours to get a bed in the hospital. My last two admissions were doozies – last time I spent 48 hours in an on-call room, the time before that I spent 27 hours in a hallway (with a pulmonary embolism). I didn’t sleep the entire time I was in these makeshift environments which is obviously detrimental to the healing process.

Value Quotient

In Lean there’s the concept of Value Added Time (things the customer will pay for) and Non-Value Added Time (things not of value to the customer). Since I’m the customer in this situation, I get to define what’s valuable to me and what’s not. Here I defined Value Added time as:

  • Outpatient Care: Total consult time plus one episode of paperwork and one episode of nursing per specialty. At least once a year I need to update my paperwork, but when there hasn't been a change (and there hasn't been since January) refilling out the forms is unnecessary. Same thing when it comes to nursing/medical assistants - last week I saw 3 outpatient specialists on the same day, in the same system, using the same EHR. All 3 still insisted on taking my height, weight, blood pressure, and temperature. All 3 readings were essentially the same. 
  • Inpatient Care: Total consult time and nursing time. Please remember it's an average - when a 2 hour procedure is preceded by 3 days of nothingness, on average that's only half an hour of value per day. 

The Value Quotient is value added time divided by total time. Here I did two calculations – one which calculated the value per visit, and one which discounted the Value Quotient per visit by the percentage of visits which were useful.

Value Breakdown

TotalTime(Hours) Non-ValueAddedTime(Hours) ValueAddedTime(Hours) ValueQuotient(Total) ValueQuotient(Discounted)
Outpatient
Cardiology 11.67 10.17 1.50 12.86% 5.51%
Endocrinology 0.67 0.25 0.42 62.50% 62.50%
Gastroenterology 16.00 15.25 0.75 4.69% 1.56%
Hematology 5.67 5.00 0.67 11.76% 11.76%
Neurology 0.75 0.67 0.08 11.11% 0.00%
Ophthalmology 1.00 0.33 0.67 66.67% 66.67%
Pain Specialist 12.93 12.42 0.52 3.99% 1.50%
Primary Care 22.50 18.42 4.08 18.15% 2.42%
Psychology 23.83 15.50 8.33 34.97% 6.36%
Rheumatology 11.33 10.67 0.67 5.88% 0.00%
106.35 88.67 17.68 16.63% 4.75%
Inpatient
Emergency Room 158.33 154.75 3.58 2.26% 1.02%
Hospital Days 1296.00 1290.50 5.50 0.42% 0.08%
Ambulance 7.00 6.50 0.50 7.14% 3.06%
Total (Minutes) 1567.68 1540.42 27.27 1.74%
Total (Days) 65.32 64.18 1.13

 

Some Observations:

  • The only reason Primary Care received any value attribution is because I need someone to renew prescriptions for anti-nausea drugs, letters for FMLA, and send records to hematology. I feel bad that their years of medical school and residency are being wasted on purely administrative procedures.
  • Some of these specialties were overly impacted by the amount of time it takes to schedule visits. For instance, hematology took six months and over four hours of my life to schedule one visit; however, the time spent with the doctor herself is quite valuable. Conversely, Ophthalmology and Endocrinology were scheduled using a third party platform so the scheduling process was very smooth, but using the third party platform led to billing issues. If I accounted for the time-value of money, the numbers would shift a bit.
  • Since anxiety and sleeplessness make my conditions worse, you could argue that time spent stressing over potential central line infections from sloppy nursing, negotiating with physicians to receive humane treatment, being woken up by medical students for their educational benefit, developing a kidney infection due to inattention and disregard, and it taking multiple ER visits for an issue to be treated should count as iatrogenic harms, but let’s keep the math simple here.

Recap

This past year I’ve had 20 ER visits leading to 9 hospitalizations spanning 54 days. I haven’t had a single vacation day that hasn’t been spent in or at the hospital this year. Looking at a recent HR statement, I’ve taken ten weeks off related to my medical conditions, most of which was unpaid. If I don’t take the whole day off for an appointment, I have to get to work early or stay late. Additionally, you only get so much FMLA time and if I'm wasting it being stressed out by nurses and back-channeling doctors to coordinate care, I'm not using the time to heal.

I understand that my case is complicated and it takes a significant amount of time to coordinate. However, there's no reason I need to physically be in the physician's office or at the hospital while they make phone calls on my behalf. I’m a social person and every second I spend in the hospital or ill is another second I’m missing out on friends and family, that I'm missing out on life. Speaking of friends, they've been immensely supportive of my care. Since I've had so many bad ER experiences I now refuse to go without a companion - ie it's not just wasting my time, it's wasting #TeamJess' time as well.

So yes, I owe the medical system my life for giving me blood when my hemoglobin drops deathly low. But there's no reason a 4 hour transfusion required 84 hours of negotiation and frustration. There's no reason that only 4.75% of outpatient visits and .08% of my hospitalizations are spent actively treating my condition. There's no reason that I spent two solid months (1540 hours, 64.2 days) of this year waiting instead of healing.

So, please, stop wasting my time. Stop wasting my life.

IMG_6078-1.JPG
Meme'd photo of my cat Oliver by Dr. Hayman Buwan, @CurryJazz. Apparently the words on the clock are Italian and say "Punctuality and Courtesy is of the King"

Hopkins

So I came back from CA, got in my car and drove up to Hopkins. They didn't have anything new to tell me about my condition, BUT they did have an awesome throughput system. You get to their atrium and you put on a wristband (you put your own info into a computer).

Then you go to cardiology and they hand you a buzzer like the cheesecake factory.

When it's your turn, it buzzes. No more signing in and being yelled at! By the time you see the Dr. your labs are complete, your echo is complete, your ekg done. And it's not just that it's done, it's that all the services are colocated and you don't have to run around. And then billing is a breeze.

Way to go Hopkins for making this super easy on me!