Wednesday, June 8, 2016

Tolerating the Intolerable

Sarah Kliff is a highly respected healthcare journalist, now with and before that, the Washington Post. 

Sarah Kliff is also a patient.  

You might think that Sarah’s understanding of healthcare policy would have made her well prepared to navigate the complexities of our healthcare system. 

Think again.

In a fascinating first-person account of her experiences as a patient undergoing treatment for a chronic foot problem, Sarah observes that writing about American healthcare didn’t at all prepare her for the maddening work involved in coordinating her own care:
“I write a lot about health care for my job here at Vox, and have spent the past seven years covering and explaining the American health care system. But there was something I didn't understand about American health care until this experience.  It is the considerable burden our fragmented system puts on patients to coordinate their own care.”
She continues:
“Every three months, I just know I'm going to lose a few days of my life. I'm not talking about the work of managing one's health, the work that diabetics do to monitor their blood sugar or the healthy eating choices a doctor might recommend for an overweight patient. This can be a significant burden in its own right. 
What I didn't understand was the burden patients face in managing the health care system: a massive web of doctors, insurers, pharmacies, and other siloed actors that seem intent on not talking with one another. That unenviable task gets left to the patient, the secret glue that holds the system together. 
For me, this feels like a part-time job where the pay is lousy, the hours inconvenient, and the stakes incredibly high. It's up to me to ferry medical records between different providers, to track down a pharmacy that can fill my prescription, and to talk to my insurance when a treatment gets denied to find out why.” 
Something that should have been as simple as getting a prescription filled turned out to be anything but:
“The doctor handed me the prescription on a purple slip. It was for a topical anti-inflammatory medication that my doctor hoped would fix my problem by reducing swelling in a joint.
 I wanted to fill it promptly because my doctor said I'd need to bring the medicine with me to my first physical therapy appointment — the sooner I could get the medication, the sooner I could start treatment and (fingers crossed) the sooner I could return to running. 
I biked to the nearest pharmacy, a large CVS. A technician there informed me that that branch didn't carry this medication. I tried a larger CVS a mile away; no luck. I was late to dinner. 
I woke up the next morning. I called Walgreens, which did not carry the medication. I checked my insurance plan online, where I learned that they don't cover this medication so I couldn't use the mail-order pharmacy. 
I emailed my doctor's medical assistant at 8:28 am to ask what I should do. I searched for the medication online; the one place that appeared willing to sell it to me was an equine pharmacy in Iowa. I did not need a horse-size dosage. 
I sat at my kitchen table crying out of frustration. I cried because I was trying my best, and I really wanted to run again, but I felt like the health care system had bested me. I cried because nobody else — not my doctors, not the pharmacists — really seemed to care. 
It was 9:14 am, and I was late to work. 
I got an email from a medical assistant in my doctor's office at 5:05 pm. The doctor never should have given me the prescription in the first place. The medication I needed would have to be ordered by their office through a specialty pharmacy. I should expect to hear from them in a few days. 
‘I'm sorry this was not explained at the appointment,’ the email said. 
But then I got another email, from a different medical assistant. She didn't mention anything about the specialty pharmacy but asked if I wanted help filling the prescription. I sent her two emails back. She never responded. 
The issue was resolved three days later when I got a call from the specialty pharmacy, asking where to ship the medication. 
On its own, this is a relatively small inconvenience. Just writing out the details feels silly, almost self-indulgent. 
At the same time, it took about an hour out of my workday. When I didn't know how I'd get the medication, I was stressed and unable to focus. I felt like nobody else really cared about whether I got the prescribed treatment.” 
Sarah’s experience rings true for me, as I have had similar experiences trying to help a close family member get her prescriptions filled for an ongoing medical condition.  She too has had to go through the burden of obtaining pre-authorizations for her medications and then being bounced around from pharmacy-to-pharmacy trying to find someone who would be able to fill it.  I expect this experience rings true for many who read this blog.

The unnecessary and excessive burden our healthcare system imposes on patients is the flip side of the unnecessary and excessive burden it imposes on physicians.  One study found that 4 hours of professional time per physician and 5 hours of practice support staff time – could be saved each week if billing was streamlined.  Another found that cost of the hours per year that physicians spend on interacting with health plans is approximately $68,000.  Many other studies have reported the same: physicians are spending more and more of their time on administrative tasks that they find to be of little value to them or their patients—one of the drivers of the documented increase in reported  “burn-out” among front-line physicians.

Yet for some reason, both patients and physicians put up with all of this—or perhaps more accurately, feel powerless to stop it.  Maybe because it seems like the entire system is set up to ensure that no one is held accountable.

Physicians blame the insurance companies for requiring pre-authorization for needed drugs or procedures, insurance companies blame the physicians for ordering too many unneeded drugs or procedures, pharmacies blame the pharmacy benefit managers for making it difficult to fill prescriptions, pharmacy benefit managers blame the drug manufacturers for pricing the drugs too high—and everyone, it seems, blames the electronic health record.  The result is unhappy patients and unhappy physicians, yet nothing seems to change.

But it has to change.  We should not be asking patients to spend hours of their time navigating our maddeningly complex healthcare system.  We should not be asking doctors and their staff to spend hours of their time filling out unnecessary paperwork in our maddeningly complex healthcare system.

Patients and doctors alike should no longer be required to tolerate the intolerable.  In my mind, there is no more urgent task than demanding simplification in American healthcare.

Today’s question: What do you think of Sarah Kliff’s experience and what should be done about it?


Jay Larson MD said...

My suspicion is that Sarah was prescribed a compounded topical. These are only mixed in specialty pharmacies, are expensive and are not covered by insurance because they are not FDA approved medications. The fact that she was handed a written prescription rather that the prescription being faxed in or electronically sent to a pharmacy points to an antiquated doctor's office. If she was having difficulty communicating with her physician's office, well that is a systems issue with that office, perhaps they just see too many patients. As far as her having to do her only care coordination, then she is not using her PCP. If she is having to carry her own medial records to appointments and has to call her insurance company to find out why a medication is not covered, then it is a failure of the physicians that she sees. At our office, we do the prior auth for medications because if a medication is denied, an alternate treatment needs to be prescribed. When patients call our office, they are responding to promptly. We can do this because we don't take care of more patients than our practice can handle. Over that past 25 years our health care system has become more complex, which translates to needing more time per patient to get everything done. This should mean that practices should decrease they number of patients they take care of, rather than take shortcuts and do less quality care.

victorgettinger said...

My answer is simple & unrealistic politically. We need universal healthcare & a uniform formulary. We need to get rid of health insurance companies & PBM's. The major problem with this formulation is the decision of who would run it & how would it be funded. These are not inconsequential problems to which someone smarter than I will need to solve. What we do know is that we DON'T want the people who brought us Medicare & Medcaid rules, who brought us 'meaningless use', oops sorry 'meaningful use' regs & thirty different ways to get paid, ACOs, etc. Can anyone imagine the organization who runs our military also running our healthcare system. Certainly I can't? So we need to look elsewhere for our leadership- Canada, the U.K., Switzerland? Our current system is being buried in rules & regs that are idiotic, user unfriendly & make our patients sicker or let them die. So somebody please find a workable solution.

Harrison said...

Oh my, where to start?
Universal health care and a uniform formulary? Hmmm. Maybe. But then there is the whole cost issue and the state of medical science. Compounded topicals wouldn't pass many evidence based tests. And so they would be left off formularies. But maybe for some they work. And they will continue to be available in our free market country. So, do they become a treatment only for those rich enough to see a doctor who might be out of the system and willing to prescribe?
And those treatments won't be alone. Acupuncture? Where is the evidence? Chiropractic? Do these professionals get shut out of a national health insurance?

And if we roll them in, well just how do we control costs?
Does the formulary only allow for meds with a clear evidence based advantage over less expensive alternatives?
And if so, then how long will the high cost alternatives be able to exist?
Will their be a loss of incentive to innovate?

And then on the other side of the spectrum, what if we just abandon third party payment schemes and move to private pay free market?
How would that work?
Well we kind of know.
It would hurt a lot of people who can't afford care. It already did.
That is the reason we have insurance and then Medicare in the first place.
We as a country couldn't just sit back and watch people die from poor care and negligence.
Libertarianism just isn't really in our DNA.
We kind of have a societal need to rescue people.

But then we don't know how to draw lines.

So now we do it poorly.

And when we listen to stories like Sarah's, and we can all identify equal or worse stories on a daily basis with our own patients, we want to find a fix.
It is obviously a broken system.

But I would argue I guess, that we need to continue to fix this whole big complicated system one step at a time.

Sure we do communication with patients badly at the end of each visit.
But we have all been through classes and listened to seminars on how to improve it.
We just need to incorporate it.

We need to clearly tell patients at the end of the visit what we plan to do for them and what we expect from them and for them.
And then have them repeat it back to us.
And if they cannot, then we need to make sure we communicate with someone who can understand it.

Health plans could work on making it more clear what they cover and what they don't and why.

We should have numbers for patients to call so they can have an advocate in our office, and that person shouldn't be only accessible through a long phone tree.
Encrypted email can help.

Lots of small things can be fixed, and in our offices we would do well to encourage patient feed back.

But of course we are too focused on getting 5's on Press Ganey scores to actually implement meaningful changes.

Anyway, hopefully Sarah's foot problem gets better and she can get back to running.