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1516809 tn?1345082764

Horror at the Hospital and Medicare - Beware

My father is 90 years old. He was diagnosed with PD late in life, fortunate for him. I am aware it is a degenerative disease, and what the future could hold, so I am not looking for sympathy or the litany about plan for the future. What I am concerned about is immediate treatment for a recent episode of rigidity, and the callousness of neurologists in regarding to treating it. Last Monday 11/22/10, I took my father to the ER at our local hospital because he complained that suddenly he had extreme difficulty walking.

For backgroud, a few weeks prior, my father developed symptoms of skin picking, nail biting, and tongue thrashing. I had taken him to an experienced Neurologist who ordered an EEG. She found what she called "short circuits" in the brain that are sending false signals that the skin may be itching. To address this symptom she prescribed a titration packet of Lamictal XR. Moreover, since my father was also complaining of morning stiffness, she upped his Sinemet ER to 50/200 from 25/100. Wouldn't you say that maybe these new meds had an effect on my father?

Anyway, back to the ER. While there, the Attending Doctors contacted this neurologist, and explained the situation. Her response was that my father suffered from weakness in the extremities, and needs exercise. I became infuriated by this answer. How could a doctor, who supposedly has my father as a patient, and knows what she gave him, trivialize the situation. Not satisfied with this non-answer, I called his PCP who agreed with me that this was a non-answer, and agreed to call in another Neurologist. Moreover, she decided to admit him to the hospital.

Three days later, on Wednesday, 11/24/10, I was informed by the Hospital Care Manager for his floor of bad news. They could not keep my father because under Medicare Guidelines, he was not being acutely treated but categorized under Observation status. I told her that he had received new meds, that he had extreme difficulty walking but while she understood under Medicare guidelines since they were not treating him with an IV or other acute treatment, he had to be discharged. The plan of the PCP was to ultimately admit my father into sub-acute rehab, however according to her, the hospital reversed the admittance staus that she prescribed from acute to observation. By so doing, according to Medicare guidelines, my father becomes ineligible for admission into the nursing home. Thus, his discharge would be imminent, and I would take him home with no resolution of the stiffness. The neurologist that the PCP consulted attributed my father's current condition to the disease, and just increased his Aricept to 10 mg, and recommended sub-acute rehab.

In a nutshell, the doctor blames the hospital for reversing her admittance status, the hospital blames Medicare, and nothing happens for my father. According to the PCP, the only way the status could change is if something acute is detected on a battery of tests that she will order such as MRI, Doppler, etc. Moreover, on Wednesday, I witnessed my father having some type of seizure while I accompanied him to the MRI. En route, he seemed to be in a very deep sleep, resulting in the MRI tech calling the hospital Rapid Response team to check my father out. Eventually, he snapped out of this state and the MRI proceeded. The MRI was done shortly after the seizure but yielded no results. The next day more tests were done. The nurse reported that he experienced an episode of extreme lethargy en route to these new tests, and she had to work to bring him out of it.

Yesterday, Saturday, the PCP called to inform me that an X-Ray revealed some pneumonia in a lung which she will treat acutely with an IV anti-biotic. In this case, this might change his admittance status to a 3 day acute which might now qualify my father for rehab at a home. In the meantime, everybody is afraid that they will be accused of committing Medicare fraud. I asked the PCP to change the Neurologist but she said it would make no difference to my father's status. I have posted this situation on several internet forums asking for intervention on my father's behalf by someone with medical experience with no luck. In other words, if there was an experienced Neurologist with vast experience in the area of PD, willing to look into this for my father or willing to consult with me, I would be very thankful. I am unemployed at the moment, my father has Medicare which is primary, and we are not rich. On top of all this my mother has Alzheimer's.

As an aside, by accident, I met the Medical Care Coordinator from the hospital who was directly involved in the input of my father's case into the Medicare eligibility work up. She explained that whatever admittance criteria is ordered by a physician, it is analyzed according to Medicare guidelines but that the hospital truly cares about my father. I said that what is abhorrent is that the doctor keeps blaming the hospital for reversing her, has placed doubt about the hospital in my mind, and no one from the hospital until now, and only by accident, offered to try to assist me. Yes, I did call Patient Relations, who quoted Medicare guidelines; yes, I did speak to a Hospital Administrator who quoted Medicare Guidelines; yes, I did speak directly to the Nursing Home, who quoted Medicare Guidelines, too. My position was that if my father did not meet the criteria for admission, he should have been turned away from the ER. These people had the audacity to say to me when I asked what are my options, we are sympathetic but you can do private pay, and get whatever you want,(where is my million dollars when I need it?) or apply for charity care. Keep in mind to plan for the future as PD is degenerative.

I even tried appealing to the QIO for Medicare to appeal the discharge. Under Medicare Guidelines, if you are admitted under Observation Status, you cannot appeal an pending discharge. Only in acute cases. Moreover, I fond out that in some hospitals, they do the admission status criteria analysis right at the ER level. Since, the hospital does not as of yet have such as system in place, the doctor should have been up to date on the new guidelines the hospital told me. I told the PCP what they said, and she went on about the problem being the hospital, and that she should not have to debate the admittance criteria while a decision has to be made in an ER.

What this experience has done for me is that now whenever I have to take my father, and/or mother to an ER, because they are not rich, and have Medicare, I unfairly have to be burdened to determine what status will they be admitted, whether the status will be reversed, and whether they will get paid, all at the expense of life saving minutes. It is no longer about preventative health or life saving health but dollars and cents.

So beware!



9 Responses
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Avatar universal
dear searchlight4759,

i am so sorry this is happening.  i watched my father get jerked around and ultimately meet his end because of substandard care such as you describe.  i cannot necessarily attribute it to medicare, but feel his age played an enormous role in the lack of proper care that subjected him to numerous infections and i will never forget how terrible that was.

bless you for caring for both of your parents.  i hope you are able to find ways to take care of yourself at least every once in a while.

best wishes,
binx
Helpful - 0
1516809 tn?1345082764
Dear binx67,

     Thank you for your caring remarks, and I am so sorry about what happened to your father. I too, have experienced encounters with doctors who would rather write my father off, "it's the Parkinson's", rather than prescribe a quality of life treatment program for him while he is alive, now.
      
      I live by the mantra that what is worse than dying is to stop living. My father will be 91 soon, and my mother 86. This is what has helped me help them this far plus the constant search for sympathetic doctors.

      All the best.
Helpful - 0
1363810 tn?1279225671
Dear searchlight,

I'm so terribly sorry that this is happening to your father and that you are forced to fight for his quality of life in this way. Your post should serve as a warning to us all. While your experience is with Medicare, these same things happen with Medicaid, private insurance, and, as our UK friends can attest, even under single-payer government run systems. There's something wrong with health care in general. I don't say that to minimize your frustration and grief in the least. I just fear that the directions we are taking in medicine have institutionalized medical practitioners, in the same way prisoners forget how to live like free people. They check boxes, fill in forms, adhere to standardized decision-making processes just like convicts become accustomed to the sounds that tell them exactly what time of day it is and exactly what to do in that moment. And, we, as patients and care providers, become accustomed to being dismissed, "turfed" off, or even told there's nothing really wrong/nothing to be done.

And, may I just say how much I admire your dedication to your parents?
--faithHGL
Oh, on the lighter side: both of my sons used to tell me that when I got old, they would push me in the shopping cart. Recently, however, I asked my oldest if he would put me in a nursing home when I get to too old or disabled to take care of myself. His honest reply was: I wouldn't want to put you in a home, Mom, but my wife might. Well, that's pretty funny, but not really.

  
Helpful - 0
1516809 tn?1345082764
Thanks for your inspirational comments. I am currently trying to contact a special type of Neurologist called a Movement Specialist in the hopes that she might be able to develop a treatment plan for my dad. What I have learned is that in theory I really should not be the one doing the emailing, and telephoning but the PCP. My father is her patient, and rather than waste energy on finger pointing because her judgment was questioned by the hospital, and she was embarrassed because she was not aware of the latest guidelines, she should be the one calling her colleagues to determine a care plan for my father. No one as of yet has explained to me why he experienced that bout of extreme rigidity or the seizure in the hospital other than the lame non-answer "it's the disease". I know what the disease is all about, and I do not know how much time my father has left. What I do know is that I want a quality of life for him at this moment. Am I asking too much?
Helpful - 0
551343 tn?1506830518
I didnt participate in this discussion because it brings back bad memories for me and my dad, but you are not asking too much to have some quality of life for your dad.

I think you are a wonderful and caring daughter.

Big hugs to your family.xxx
Helpful - 0
1363810 tn?1279225671
Dear Searchlight,
I don't think you are asking too much. You need some help, an advocate for your father, so that you aren't carrying the full load. It makes sense to me that the PCP should be the one creating a care plan and coordinating care for your dad. I'm wondering what you can do to bring his current PCP back to a partnering position with you, so that she can get over her issues, and get on with the business of helping your dad through this. Alternatively, can your dad change PCP's to someone who might also specialize in geriatric care -or at least have a heart for elderly parents?

To my admittedly limited knowledge and understanding, so many of us with neuro issues that don't fit in a nice, tight, little package, regardless of age, find it really difficult to get appropriate care. We end up as our only real advocates, unless we are so fortunate as to have a friend or family member who can take up the banner and fight for us. Your father is one of the fortunate with you as his daughter.

I wish I could offer you something more substantial, because you and your father deserve more and better. My one little contribution is just to encourage you to hang in there.

Mrs. Aristotle,
I, too, have some bad memories of trying to get appropriate care for both my grandmother and great-grandmother. Deeply frustrating and painful to remember loosing them.

All the best to the both of you.
--faithHGL

Helpful - 0
1516809 tn?1345082764
Your comments mirror what two nurses involved with my mother and father's home care mentioned to me today. Today I finally connected with a Neurologist who is a movement disorder specialist. She stated that since there are other medications involved like the Lamictal XR which implies seizures, and Sinemet ER, that a general Neurologist needs to address before she would consider becoming involved with the Parkinson symptoms. She then recommended a general Neurologist who I called. His answer is that he runs a solo practice with limited resources, and that he would be willing to see my father in the office but that since they found remnants of pneumonia, my father needs to be stabilized before he is brought to his office. He suggested that the PCP handle this. Both Neurologists did ask similar questions about his treatment and medications like I did but as far as participating in his treatment or acting as an advocate, it seems they shift the follow-up back to the PCP.  For my father and mother, I as their son, am their only advocate. You and Mrs. Aristotle are right, it is the PCP who should be the advocate. Right now, I am very exhausted. I must gather my thoughts and strength because it seems the next step might be to replace the PCP but with the right one. I am having an internal battle with myself because I feel this is really the wrong way to go for my father's current situation.
Helpful - 0
1516809 tn?1345082764
Thanks for your support and comments, too.

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1516809 tn?1345082764
What complicates matters is the logistics. Many specialists, as a rule do not visit Nursing Homes and some doctors who are good, do not visit the one where your loved one happens to be even if you ask to make an exception.

There was one Neurologist some time ago that I had liked very much. When my father had an issue, I deliberately placed my father in a Nursing Home that this doctor was willing to visit. This was a major mistake as the Home provided poor care. I vowed I would never do this to my father again just to accommodate a doctor.
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