We left off Part 1 and Part 2 with K and I returning to her home, her still incredibly ill and me needing to return to my own home in Atlanta. Her mother arrived on Thursday, December 4th. This part of the story is drawn from the notes I made while texting and speaking with her mother and consulting with California Department of Managed Health Care (DMHC). K was so ill at this period in her life, she still only remembers bits and pieces.
Who Are These People and What Do They Want?
Before K's mom arrived in the afternoon of December 4th, K and I attempted to reach the insurer to discuss a viable treatment plan. After some 20 minutes on hold, we reached a young woman having limited English skills. I wanted to discuss the insurer's response to the Expedited Grievance I had filed earlier in the day. She was unable to understand me. She thought I wanted to file a grievance and tried to direct me to the insurer's website. Upon my insistence, she agreed to transfer me to her manager at which point my call was dropped and never returned.
Later in the morning, we received several calls from representatives from Managed Care--this is the group that denied care the prior evening. It turns out that the insurance company doesn't handle that task directly. They hire a third party to do so on their behalf. Apparently, the Expedited Grievance and the involvement of the DMHC (who had sprung into action and sent interrogatories to the insurer by the afternoon of December 4, 2014) was sufficient to cause Managed Care to attempt to provide service. For the record, the insurer had 72 hours to file a written response to the interrogatories from the DMHC. They never filed a written response and, as far as I know, nothing ever happened as a result.
K was much too ill to speak with anyone. The Managed Care representatives all seemed to assume that I knew who they were and why they were calling. They would start rattling off names and numbers without any hesitation and without my understanding in the least what they intended.
Finally, a young woman from the group called to provide us with the name and phone number of a rheumatology specialist who was willing to see K the next day. We inquired as to the location of the specialist's office and the young woman assured us it was near to K’s current residence. Later that day we found that it was some fifty miles away from her current residence. The location of the specialist was based upon K's prior address, which K had unsuccessfully attempted to update multiple times with her insurer since her move three weeks earlier.
Of course, K was much too ill to make the long drive across town. Further, she did not want to establish a relationship with a doctor far from her home, when nearby doctors were equally or more qualified. That mattered not at all. It was, according to Managed Care, this specialist or none at all.
More Trips to the Emergency Room
It was only later I learned how much K’s condition continued to deteriorate and how truly outrageous the insurer’s conduct became. Over the next few days, the insurance company directed K back to the UCLA Medical Center ER two more times. Once she was taken by her mother. On the second occasion, the insurer sent an ambulance to her home to take her to UCLA.
In both instances, after K spent hours in ER doped up with opiates, Managed Care denied admission to UCLA. One ER doctor even signed a document stating that K’s condition was too critical to allow her to be transferred. K could overhear the urgency in the doctor’s voice as he spoke with Managed Care. Following additional pressure from Managed Care, this same doctor changed the document to allow for a transfer. Following the doctor’s concession and K’s midnight agreement, K was transferred to a hospital some hour and a half away from UCLA in the middle of Tuesday night, December 9. She was still in critical condition.
Without any sense of irony or responsibility, the insurer later refused to cover the ambulance company bill for the transfer to the new hospital.
K is Admitted to A Hospital
K still had no primary care doctor nor any relationship with a specialist.
Upon K’s admission on the 9th, the new hospital began to redo all the tests which had been done at UCLA Medical and sent to it. No doctor reviewed the UCLA test results. Clearly, the tests were a profit center for the hospital and it mattered not one whit that they were redundant and/or painful for K.
Redoing the tests not only wasted money, but it also wasted critical time as K’s condition deteriorated while awaiting test results. During the week of the 9th she almost died again; her heart so weak. Had the tests had been reviewed and treatment started, K’s hospitalization would likely have been 2-3 days instead of the twelve days it turned out to be.
The Insurer Demands K Be Transferred Again
By the early afternoon of the 10th, Managed Care attempted to transfer K to another facility for "rehabilitation." Not surprisingly, K's condition had not improved overnight. She was also scheduled to see two specialists in the hospital where she had been admitted later that same day. Those appointments --her first with specialists--were scheduled after the time she would have been transferred to a rehabilitation center. K still had no diagnosis, except for a wound on her leg had been tentatively diagnosed as pyoderma gangrenosum (a very serious infectious illness requiring prompt attention), no discharge plan and no rehabilitation plan.
Upon learning Managed Care’s plan, K’s mother contacted Managed Care, K’s brother who is an attorney also contacted them and I contacted the DMHC (which had closed K’s file upon her admission to the hospital). Together, we commenced the fight to keep K in the hospital till she had at least been diagnosed and stabilized.
Through multiple daily telephone calls between K's mom and K’s brother with Managed Care, the threat that DHMC would be re-involved, perhaps the hospital administrator’s realization that they could be faced with an EMTALA suit, the diligent attention of kind, capable nurses in the hospital, and K's knowledge of how to deal with the doctors, we all managed to keep K in the hospital until Wednesday, December 17th.
During her hospital stay, K saw the specialists that she needed and finally received a diagnosis, which turned out to be Ulcerative Colitis. She even had her leg wound attended and began to take a few steps with the assistance of a physical therapist.
Of course, the work of Managed Care isn't complete until it manages to make a complete hash of the care the ill person receives at home. Managed Care attempted to discharge K without her having received the first Humira injection ordered by her physician. Her mother insisted it be administered in the hospital in the event of an adverse reaction. Further, K's doctor ordered continuing treatment for her leg wound and physical therapy. Managed Care ordered a single day's physical therapy and a single day's wound care. This may have been retaliation for K’s resistance to being transferred to a nursing home, or it may have just been incompetence. It was hard to tell where negligence left off and actual malice began.
Since K had not walked in weeks, the idea what one day's physical therapy would be adequate was ludicrous. In the end, the nurse who came to treat K's leg wound at home did not have the prescribed antiseptic, nor did she know how to obtain it.
K's mother is nothing if she is not diligent. She found the antiseptic on Amazon and had it delivered the same day. She assumed responsibility for caring for K's wound herself and this proved to be all the care that was needed to finally heal the wound.
Meanwhile, Back at the Ranch
For better or worse, all of the foregoing events were overlapping with the brief window of time K had to choose her insurer for 2015. Her current company automatically re-enrolled her. This only makes sense, when one realizes that not only was her premium subsidized by taxpayer dollars, but the insurer was protected from losses due to certain provisions of the Affordable Care Act expiring after 2016. Still, K clearly wanted nothing further to do with that insurance company or the related Managed Care company.
K’s mother found a much more expensive insurance plan (not one subsidized through the exchange), whose coverage was accepted by a competent primary care physician near K’s residence. She also extended her stay at K’s home through early January 2015. By the time her mother left to return to her own home, K had a better, albeit more, much costly insurance plan, a diagnosis of Ulcerative Colitis, a primary care doctor near her current residence, a prescription for Humira and a start on the road to recovery.
The Moral of Part 3 of the Story
The moral of this part of the story is: One, the moral of Part 2 bears repeating, health insurance is not health care. Two, hospitals are no place for sick people. You absolutely must have an advocate by your side at all times. Even under the best of circumstances, well-meaning, diligent government employees can do very little to assist you with receiving health care.