Before I share this information I want my readers to understand that I know this situation will get resolved. In the end Jude will get the approval he needs but nonetheless this is frustrating.
On Friday when I got home after a long day at work I opened a letter from my insurance company telling me they denied Jude's nursing........again. The reasoning was as follows, "The request for private duty nursing is denied as not meeting medical necessity guidelines. Specifically the clinical information provided for medical review does not document: 1. medical needs requiring skilled nursing care and (2) a level of care consistent with skilled nursing confinement. In addition, ongoing skilled home nursing is not considered medically necessary for patients who are on scheduled continuous tube feeds.
At first I glanced at the paperwork and sighed because I thought our nursing agency had not turned in the proper documentation for review. This happens frequently within the insurance industry and denials can be quickly changed to approvals once the proper paperwork is submitted. However I began to look the document over carefully and I soon realized they did have Jude's current information. Jude didn't go home on a continuous feed until he left the hospital on hospice in February of 2015. Then I realized they included the doctor's name they were denying the orders to and it was Jude's HOSPICE doctor. Then I began to squint and utter a few curse words about the stupidity of the entire situation. I called the number on the letter and received a nice man who was obviously on the front lines and just answering the phones. After hearing my plight he turned me over to a live nurse. The nurse was so kind and listened to Jude's long list of medical needs including suctioning multiple times a day (on a bad day anywhere between 40-80 times), continuous oxygen, respiratory distress, and hospice care. I then told her I was pretty familiar with the skilled nursing guidebook due to my issues with TMHP and that continuous feeds are indeed a need for nursing. In fact it states "The individual requires treatment or complex skilled nursing care of an unstable medical condition, including but not limited to treatment of at least one of the following:ii.Gastrostomy feeding complicated by frequent regurgitation, with or without aspiration;"
The nurse apologized profusely and explained that she had no idea how the doctor came to the conclusion to deny Jude's case. She acknowledged they had lengthy information on home. She said the best thing would to be to complete a peer to peer review which I already knew. So basically Jude's hospice doctor will contact the insurance doctor and go over Jude's case in detail. Generally when making these decisions an insurer will request 15 days nursing notes from an agency. They then base their decision off the notes received. In the past 12 months I cannot think of 15 consecutive days that Jude had that were good. So therefore I am not sure what they are basing their decision on. Regardless I know it will get handled. What frustrates me is I know there are families out there that receive these denials and simply accept the denial and do not fight it. I honestly believe companies issue these denials because a certain percentage of patients will not fight the denial or pass away prior to the completion of the appeal. Regardless I told the nurse, "it's insulting and frustrating that my son is dying and your company is denying the best care for him at the end of his life. It's not okay and I expect better for him." She completely agreed. I truly believe that insurance companies and the state need to have field reps to make in home visits to admit or decline a child with complex medical needs to any plan. That may be unreasonable but it's my wish for all families facing a situation like ours.
Jude had a bit of a rough time this weekend. His coughing is still pretty persistent, he has intermittent fevers, and he is still vomiting some. At many points through the weekend the monitors were shut off because Jude couldn't hold his stats. However he is very smiley and being good for his nurses.