Saturday, March 31, 2007

LISA TODAY - 31 March 2007

Select Specialty Hospital
Phoenix, Arizona

Mid-February through End-March 2007

Richard’s hopes were running high—in fact, we all had high hopes that Lisa’s spasticity would lessen after receiving 20- medically approved hyperbaric therapy treatments. If Lisa’s muscle tone returned closer to normal, she would be much more comfortable. And, those who care for her could do so with less difficulty when they move her in bed and to and from her wheelchair, or when she receives physical therapy, and range of motion exercises.

We knew there were no guarantees we got the message at a special meeting Richard attended with all of the principals who care for, manage, fund, administer, and oversee the healthcare services Lisa receives at Select Specialty Hospital. The meeting was called to assure everyone understood and agreed to their part in Lisa’s upcoming hyperbaric therapy and her eventual discharge from the hospital. It was all discussed: who, how, where, what, when and why. Richard drove to Phoenix to attend that Thursday meeting. The bottom line, Lisa would have to show 'measurable improvement' for the hyperbaric treatment to be deemed successful. The 'measuring' would be done by her therapists and caregivers. They would be in the best position to evaluate her progress and provide the most objective, timely and informed assessment of Lisa's functional improvement. Their findings would be documented and reported to Dr. Kwasnica.

It was stated that if 'measurable improvement' was shown, Lisa would qualify for additional hyperbaric treatments until her improvement would 'plateau'. Blue Cross representatives who were present, later that day agreed in writing to pay for 20-sessions under these guidelines. They further agreed Lisa would stay at Select throughout this process.

Part of the 'process' was to be Lisa's discharge plan. The discharge plan is a detailed strategy to assure all concerned that Lisa would have a safe, secure, well equipped, supplied and properly staffed once she was ready to leave Select.

All agreed the options for Lisa to make significant improvement were about played out and that afterward, whatever gain came from the hyperbaric and other tone management treatments, Lisa's discharge plan would include:

• Getting Lisa as medically stable as possible, that is her nutrition via tube feeding, her airway protection through her trach, her susceptibility to motion sickness and other medical conditions should be capable of being maintained in a home setting.
• Identifying the braces, splints and other equipment she would need to manage her spasticity, along with the optimum mix of medications for her pump.
• Identifying, ordering, and have delivered the equipment and supplies necessary for Lisa to survive and be comfortable at home. It was understood that Blue Cross would have to review the lists of medical and rehabilitation equipment to determine what would be covered by insurance. Richard would be expected to come up with the money for the necessary, but uncovered items. For example, for Lisa’s bath a lift is needed to transport her from bed to bath, and a special chair to position her safely in the tub, but neither the expensive lift nor the chair are covered.
• Staffing needed to be recruited and hired, and then they along with family required training in order to provide Lisa with the 247 care she requires.
• Doctors in Tucson would need to be identified and willing to manage Lisa's care. The Tucson medical staff will be briefed by Lisa's current team in Phoenix.

'Homework' assignments were made and accepted. The Phoenix doctors would oversee Lisa's care for their areas of practice and find or at least brief in Tucson physicians. That is Dr. Fracica hyperbaric; Dr. Kwasnica neuro rehab and Dr. Bliss all other medical issues as Lisa's attending physician.

The Select staff would prepare and submit for review (to the Phoenix doctors) a list of equipment and supply items, once approved would then go through vendors to Blue Cross for review and approval. The approved items could then be ordered and delivered.
Richard's assignment included ordering non-covered items, finding the staff to care for Lisa, getting the necessary modifications made to their home (the ceiling lift being the biggie) and then figuring out how to pay for it all. This was no small task.

After hiring two different law firms which specialize in the field of healthcare disability benefits, Richard learned Lisa was ineligible to receive Medicare home health benefits for 2- years from when she began receiving Social Security Disability benefits. The waiting period was because Lisa did not meet the 65-years of age requirement. She was also found ineligible to receive Medicaid or Arizona state benefits as well.

Blue Cross offered to help Richard with the logistics to find caregivers. This was certainly welcomed; unfortunately that offer was a dry well. ((while all this was going on in Phoenix and, as an aside to all of this, As a prosecutor in Tucson Richard’s work gave him the heaviest trial case load since coming to Tucson.
While all this was going on in Phoenix, as if it weren’t enough, Richard’s work as a prosecutor in Tucson found him with the heaviest trial case load he has had since coming to Tucson. I mention this, because I marvel that he “continues to pull the plow with his head up. Frankly I don’t know how he does it… must come from his father. Just kidding, it is all about Lisa and Michael because that’s clearly what motivates him. However, it does stagger one, considering all that he is doing, and besides, has in fact, lead his office since Thanksgiving in the number of cases tried.)

Whew! So the meeting ended with much said and promised. But two things never stated were to fundamentally change Lisa's treatment.

First, Dr. Kwasnica changed the “rules in the middle of game which adversely impacted upon the financial support she received from Blue Cross/Blue Shield.” Even though she was present for the meeting and interacted with the rehab staff during the time they developed and documented their measurements of Lisa’s response to hyperbaric, Dr. Kwasnica decided, without telling anyone, to use a much more rigid and inflexible standard for measuring Lisa’s improvement. The “Ashworth scale” doesn’t, for example, count Lisa’s sitting more easily in her wheel chair if other factors aren’t also found. Simply put, the Ashworth scale would ignore the improvement Lisa’s therapists and caregiver were objectively measuring.

What happened next was a punch in the stomach because although Blue Cross representatives were present at the meeting, and everyone understood that discharge planning would be going on simultaneously during the hyperbaric therapy, they never said Lisa's insurance coverage would end once hyperbaric treatments were finished; or that all discharge planning must be completed by then. We approached hyperbaric with cautious optimism, because to us, these two critical points were undisclosed at the meeting, even after everyone supposedly was on the “same page”.

Trying to keep this all in chronological order and yet coherent is a… somewhat difficult, I hope you are still with me.

From the onset, every precaution was taken for Lisa during the hyperbaric treatments so she would not be unduly stressed or become uncomfortable during the therapy treatments. For instance, small tubes were placed in Lisa’s ears to help balance the atmospheric pressure of the hyperbaric chamber on her ear drums. No one predicted how she would respond, so we waited. But the wait was bearable thanks to the encouragement we received from emails and phone calls. People were telling us of the many prayers, and many extra prayers which were taking place… prayers of praise and prayers for Lisa from all over the United States.

Then Lisa’s first reports did measurably to show improvement over her spasticity during her early hyperbaric treatments. Her physical therapist noted her muscle tone was more relaxed during therapy sessions. We also heard from Lisa’s Rangers that they were able to move her arms and legs with less resistance than they had for the previous months. And further, Lisa's hospital caregivers, many of whom didn't even know Lisa had started hyperbaric, observed and charted Lisa's improvement from when they bathed and turned her.

It was about this time that three complications adversely affected Lisa’s medical condition, and retracted her response to the hyperbaric treatments. Her progress took a dive.

• First, the scopolamine patch Lisa wears behind her ear controls vertigo, nausea, gagging which comes from her brain injury and occurs when she is moved. In fact, at an earlier time, vertigo forced her therapy to be stopped until prescribing the patch helped her regain control of the vertigo. The patch is the similar to the one people use on a pleasure cruise to control their motion sickness. A patch was removed during her hyperbaric treatments, and once removed, came off again because Lisa perspires when she exerted or exerts herself. Lisa had been vomiting for several days in therapy and her muscle tone had increased before the problem was discovered and resolved.
• Second, her tube feedings were discontinued for an extra 8-hour to accommodate the time for Lisa's transport to and from and treatment in the hyperbaric chamber, as well as her regular therapy time. This was deemed necessary to prevent Lisa from vomiting and then inhaling tube feedings should the movement cause nausea. The result was Lisa received significantly fewer calories per day leading to a dramatic weight loss. Lisa lost over 10% of her body weight in less than a month. This degree of weight loss requires medical treatment and close nutritional observation and correction. Therefore, one might reason it is an acute medical condition.
• Third, Lisa was diagnosed with a bowel condition which contributed to her weight loss, and required antibiotic therapy for over a week to correct.

No one could reasonably expect hyperbaric therapy to overcome the impact of these three complications. To Richard, Lisa's therapists and her hyperbaric doctors the next steps seemed clear: resolve the complications (keep the patch on, increase her tube feedings, and clear the bowel infection) then see if the documented 'measurable improvement' returned and increased during another 20 sessions.

By the time Lisa's last one hour session in the hyperbaric chamber was completed, Richard was confident everyone would support another 20 sessions. Lisa's patch was secured with tape, her infection was clearing and her nutritionist was working on a plan for Lisa to regain her weight. Rehab supervisor Deb Pope had documented Lisa's improvement as well as the complications in a memo to Dr. Kwasnica.

But then everything started going very wrong. Dr. Kwasnica reported to Blue Cross 'no measurable improvement' based upon her, use of the Ashworth scale, which does not consider all the functional, observed, documented improvements measured by the therapists reporting to Dr. Kwasnica.

With that verdict, Dr. Fracica's (Lisa's hyperbaric doc) hands were tied. Blue Cross was off the hook- why should they pay given Dr. Kwasnica's report- even though their own representatives had told of the 'measurable improvements' over the preceding weeks. So, no more hyperbaric treatments for Lisa, at least while at Select Specialty Hospital.

Next, Blue Cross asks Dr. Kwasnica if Lisa is still 'acute.' A pretty important question, if Lisa's condition is acute her placement in a 'long term acute care' (or LTAC) facility like Select is medically necessary and covered. But there's a serious breakdown here. This question is properly asked of Dr. Bliss; Lisa's attending who can describe her medical acuity. Instead, Dr. Kwasnica answered from a neuro point of view: no, Lisa's not acute.

Unfortunately, the distinction was lost on Blue Cross. They heard what they needed. In fact, when Dr. Bliss returns from the vacation he was in the middle of, he will tell Blue Cross the combination of complications and particularly the weight loss makes Lisa 'acute' and her stay at Select medically necessary, but by that time the decision had been made: Lisa will lose additional hyperbaric treatments and continued coverage for her stay at Select.

Rather than the commitment to helping implementation of the discharge plan, Blue Cross gives us 4 days to get Lisa out of Select or start footing the $2,000 a day bill.

Blue Cross says this knowing that the equipment, supplies, staffing necessary for Lisa's survival are not yet in place; that her attending physician isn't in town and the doc covering for him refused to discharge Lisa because it would be 'unsafe.' Blue Cross maintains their position even after Dr. Kwasnica corrects the misunderstanding and tells them she gave no information about Lisa's medical acuity.

Forced to choose between an unsafe, premature discharge and potential bankruptcy, the choice for Richard is clear. Lisa will stay at Select while an appeal of Blue Cross's decision is pursued and the discharge plan is implemented.

We never expected, at this important time that “Lisa’s response” to the hyperbaric therapy, despite her complications, would become an evaluation using never disclosed scales rather than the ones agreed upon. Then, taking that information from the neurologist, that Lisa’s insurance company, Blue Cross/Blue Shield, would decline to pay for additional hyperbaric treatments or the continuation of her hospitalization at Select Specialty Hospital.

The conflict, in my opinion, led to an administrative blindness to the three (vital) complications that happened during Lisa’s hyperbaric therapy. Three factors that inhibited Lisa from getting evenhanded benefits from the therapy she received, and in my opinion skewed the interpretation of her response to hyperbaric treatments. This translates to Richard and Lisa receiving a request from the hospital to immediately make a $60,000.00 payment to the hospital, and pay the hospital $2,000.00 a day and for 30 days advance.

The 'good news' is that because no facility offering a lower level of care will accept Lisa in her current condition and with no coverage, she will remain at Select.
And that's a very good thing. Efforts to simultaneously increase Lisa's tube feedings while trading down to a smaller trach were a disaster. Lisa began vomiting and with the smaller trach not providing the protection to her airway, she inhales the material resulting in yet another infection.

Fortunately, Lisa's doctors have gotten her through this before and will again.
A new trach, still small enough for Lisa to vocalize and breathe with it capped but with a lung -protecting cuff is replacing the current one and Lisa is slowly regaining weight. (The smaller trach was put in place this past week, and Lisa is breathing easier.)

So, do you suppose these developments, which would have required Lisa's hospitalization even had she been discharged before, have gotten renewed coverage? Blue Cross representatives say no, they are 'through' with Lisa!

Well, we'll see about that.

Michael Wintory
mlwintory@msn.com

(I want to acknowledge and thank Sherry for her input and clarification which helped me immensely me in writing of this journal and Richard too for his patient accounting of the events. Without their assistance, I couldn’t master the material.)

Lisa’s web site is: http://lisalatest.blogspot.com