Executive Order on Improving Price and Quality Transparency in American Healthcare to Put Patients First was signed on June 24, 2019 with great fanfare.
Its proponents tout this as the latest of many reforms by the current US administration “to transform our healthcare system into one that delivers affordable and accessible healthcare, and puts American patients first.”
Sounds terrific. I only wish it were true.
I have no argument against bringing transparency to medicine. In no other industry can a ‘service’ done by the same provider, be charged and reimbursed differently depending on who is actually paying the bill. This IS crazy. Unfortunately, it’s our reality given our current health financing scheme.
However, the belief that transparency will serve “to transform our healthcare system into one that delivers affordable and accessible healthcare, and puts American patients first” without whole sale change in the system, is delusional.
a Patient
Mr Y, 55 yrs old, has advanced liver disease and is hoping for a liver transplant. Although he has started the evaluation process, he has not yet been accepted nor placed on the transplant list.
Four days ago, his condition acutely declined requiring admission to the ICU. Not only was his liver failing, his kidneys were as well (a particularly poor prognostic sign). Today, he has finally started to show some improvement- his kidney function is improving and his delirium is clearing. But he’s still quite ill.
I was asked to meet with Mr Y and his family. His providers wanted me to explore what Mr Y would want in terms of possible treatments if his condition again starts to decline. Essentially they wanted an answer to the ‘code status’ question.
On my review of his chart, his clinical picture is a bit confusing. Despite extensive testing and specialist consultation, it’s not 100% clear that his failing liver is to blame. I asked the referring provider if she had reached out to the transplant center where Mr Y was being evaluated, to see if perhaps they would have insight or would want him transferred to their facility. I mainly inquired because I expected the patient and family would ask about this in light of Mr Y’s terrible prognosis. Because Mr Y was so unstable at the beginning of his hospitalization, transfer was not possible. But now, with his slight improvement, Mr Y would be safe for transfer, if accepted. So the referral was sent.
I met with Mr Y and his large family.
And although they understood that Mr Y remained quite ill and could be nearing death, as is typical when there is possibility for transfer to a tertiary center (see prior post), his family was ecstatic.
Mr Y was not.
why?
Mr Y clearly expressed that he knows he’s dying.
And he knows the tertiary center potentially could offer something we can’t.
But….,
he’s not sure wants to be transferred.
Not because the facility is miles away and it would be hard for his family to visit. Mr Y is worried about the potential financial burden he could be leaving his family. Especially with the reality that he may “die anyway” .
could the transparency promised by this new executive order help?
Because of our dysfunctional healthcare and payment system, there’s no way to know if transfer would cause Mr Y and his family to incur a large financial burden. Mr Y has private insurance- but that guarantees nothing. The cost could be almost totally covered, or he could have a huge bill- potentially thousands of dollars, and there is ZERO way to know ahead of time.
In part that is because it’s impossible to know what ‘care’ he will actually require. The holy grail of ‘transparency’ can only be attained when the care or treatment is ‘shoppable’ (defined in the Order as: common services offered by multiple providers through the market, which patients can research and compare before making informed choices based on price and quality).
For Mr Y the only choice is to try transfer or stay put. There’s no shopping. And there’s no guarantee that transfer will even be beneficial. So contrary to those who tout this as a ‘game changer’ this recently signed executive order does NOTHING to help Mr Y or the many other patients in less acute situations who may be trading life-saving, or life-sustaining medical treatment for other financial necessities.
and this should be unacceptable to us all. The true fix requires serious reconfiguration of our current US health care system, not the fake panacea offered by transparency.
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