Monday, January 6, 2014

Dad's Lesson: Reasonable and Necessary

So what did YOU do on vacation?

I feel like a kid in grade school with that question. The two weeks I spent away from work, and away from this blog, were in the interests of getting some rest so I could return to the new year with energy, excitement and vigor in the world of workers' compensation.

But the reality of my time "off" is that I was mostly dealing with my aged parents, whom I visited every other day or so and interfaced with the various vendors rendering their care during the same time.

(Yep, I put a lot of flight time in N6641M this vacation between my home and Oceanside, CA!)

These past couple of weeks also put into sharp focus the conflict between medicine, reality and law because Dad's condition has stabilized to a poor quality of life with no good solutions, and Mom's dementia is progressing predictably but her health is better than ever at her age, which means that financial management is critical.

Dad & Mom: Holiday Spirit

Dad is bed ridden and this is probably the WORST outcome of any! Those of you who know me personally would likely testify that I have a rather high energy level. When I was a kid it was called hyper-activity (no attention deficit disorder though).

This characteristic was inherited from my dad. Folks familiar with my dad, even as he turned 91 last October before getting ill, marveled at how much he could get done, how much vitality he had, and the strength and stamina he exhibited.

Yep, Dad is hyper-active. That's DePaolo DNA.

For Dad to be confined to a bed all day, every day, is like putting a lion in a cage too small for the animal to turn around.

"Is this how life will end?" Dad asked me on one of my visits.

Hell, I don't know. No one knows. We come into this world with nothing, and we leave this world with nothing, and everything in between is what we call "life" - and because we are more humane to animals than our own species we can not undertake merciful termination without suffering significant legal consequences.

So, yep Dad, I guess this is how it all ends for some of us and it appears that way for you, unfortunately.

Dad made some poor decisions on the road to this state of being - he didn't comprehend that perhaps HE would be disabled and in need of 24 hour care for a protracted period of time. I don't think any of us did - when we decided to have him discharged from the hospital and into hospice care he and the family assumed there were maybe 2 weeks left in his life.

We were wrong.

And in fact Dad SEEMS to be more healthy now than when in the hospital, but that's not really the case. His congestive heart failure is taking longer than anticipated towards the mortality sign off, but he IS terminal - all of the medical professionals have the same conclusion.

The key is how to make this remaining time as comfortable as possible. Morphine was started early but that didn't sit will with Dad - he did not like his brain cloudy because his thoughts and ability to think were still clear and lucid. His brain functions normally and actively. Pain isn't the issue. Life is.

Dad wants to walk again so he can be productive feeling. His active brain tells him he can do that. His body has another answer.

He has atrophied terribly - he weighs a fraction of what he did when he was hospitalized in November. Now he is all skin and bones.

He is still his combative self and still believes that there is some physical ability left in him that would enable ambulation and self-care, despite what the experts all say. So he raised a fuss at 3 a.m. New Years Day, claimed his breathing was worse, got the nurse case manager from hospice over who called me at 5 a.m. to relay the news that Dad wanted to go to the hospital in the belief that after 3 days he would be discharged to a rehab facility for physical therapy.

"Dad, DON'T DO THAT ANY MORE!"  Yep, me and my siblings were a little upset with that stunt!

Because Dad didn't believe that he would ever be disabled his state of care is much more expensive than it otherwise would have been had he chosen a different living situation. After a few weeks of watching the expenses pile up and managing my folks finances it became very clear to me that they could not afford this for very long.

Something must change!

Exploring the different options, analyzing benefits, researching costs - all time consuming affairs (and the subject of another post later).

In the meantime Dad, at least psychologically, needs some physical therapy and exercise to keep his mind out of the bed.

But physical therapy isn't INDICATED for his state of being according to the medical literature and the insurance and hospice protocol!

Which brings me to workers' compensation - nearly every state follows some "guidelines" for medical treatment based on some element of professional consensus. Sometimes maligned as "cookbook medicine" the value of these guidelines is to maintain some consistency in medical treatment for a particular condition, which translates to consistency in treatment costs.
https://ww3.workcompcentral.com/news/story/id/a07c68b2c9b93e7cca1a10e060b7db69p
Consistency is what insurance companies and risk managers, and their actuaries, need - this helps them understand the financial aspects of the system to ensure that there is enough money to go around to everyone that needs it.

What happens of course is that conflicts arise between what is "reasonable and necessary" (the workers' compensation treatment standard) and what is actually good for the patient - because of course every patient, as in every case, is different, and not all benefits or risks are apparent in the guidelines (nor could they all be).

My dad is different - most people aren't hyper-active. They don't need that stimulation.

My dad does. It would be huge psychological boost and make his last days more pleasurable, and isn't that what hospice is supposed to accomplish?

Dad's personal physician made a house call the other night. He told my dad the dark, fatal, truth - "Andy, you're dying, but it's a slow death."

Dad's physician ordered up physical therapy. This isn't indicated at his level of care, is not provided for in the guidelines - who will pay for this?

The doc was confident that physical therapy would be provided and would be covered by insurance, either Medicare through hospice or my folk's secondary payer. He knows the systems, understands the protocol, speaks the language.

And isn't this the same as workers' compensation? There are limitations to what can be done in the workers' compensation treatment system, but if one knows the system, understands the law, speaks the language, exceptions can be made for the right case.

Honestly, the very, very best thing for Dad is death. That is really what he wants. But death isn't coming to him very efficiently and because our laws inhibit human euthanasia the patient becomes a victim of his own terminal illness.
https://ww3.workcompcentral.com/news/story/id/56ef678b6f8e3c33ab9818a31fe474e8m
In the meantime we are left with "cure or relieve." There's no cure for death, but there is relief and in my dad's case that relief is physical therapy, as limited as it may be. His body may have failed but his MIND is as hyper, as active, as powerful, as ever.

Physical therapy for Dad isn't about making him healthier, or bringing him back to productivity. It's about relief from the effects of his journey towards death.

I think sometimes we forget that ("relief") in the provision of workers' compensation benefits. We have tough jobs discriminating between those cases that are worthy of exceptions, but that's why we're professionals.

Sometimes the road to our final outcome isn't very clear and doesn't fit within our definitions. Sometimes we have to go outside the four corners of accepted protocol. When all this plays out on a personal level our sensibility of what is "reasonable and necessary" changes.

3 comments:

  1. Thank you for this, David. It is very perceptive as well as very touching. Sorry your family and your dad have to go through this.

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  2. Dave, I completely understand what it is to have aging and debilitated parents, both as a geropsychiatric nurse and a daughter. You are in my thoughts...

    You are making some important connections about the needs for care in a worker's case as well. Many times as a psychologist I recommend aquatic physical therapy, or membership in a gym, or even weight watchers, but I don;t know if I am getting taken seriously.... I am well aware of the MTUS and ACOEM. The Guidelines represent a "dumbing down" of what could be needed for a given person. They're "cookbook," based on a handful of studies, representing the bell curve. The bell curve is the middle 68% of the studied population. Obviously your Dad would be an outlier. But, so would the 32 year old laborer who has done heavy physical labor for 15 years. Many more times than not I find that a depressions as the direct result of the protracted time off work, and loss of feelings of productivity as a result of being off work.

    Thanks again for your poignant piece... May the passing be smooth...

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  3. Sorry about your folks....

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