A Collection of Problems with the US Health Care System

Actor. Illinois. Interview Statement 10030.

Categories: Patient Statements
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Question: Tell me something about your mother. What is she like? What does she enjoy doing? What have her major interests in life been?

Answer: My mother was born on November 29, 1924 in Minneapolis. She graduated from Nursing School in the late 1940s. She gave up her nursing career to raise two children. In the fall of 1971 she started a job at the local branch of a large department store, as the store nurse. She stayed in that position until it was eliminated in the early 1980s. She then worked in a variety of positions at the department store. At this time she started taking courses at a local Junior College, which she continued through the 1990s.

She was a creative individual, but did not use her artistic skills in her adult life.

Question: Tell me something about your step-father. What is he like? What does he enjoy doing? What have his major interests in life been?

Answer: My stepfather was born on October 2, 1920 in Chicago. He was in the Navy during World War II, in the Philippines. After that he started in retail sales, where he spent most of his life working at the same large department store for which my mother worked. He is a very religious individual, who also has an interest in philosophy and Native American history.

My mother and stepfather’s spouses died at about the same time (1985), and they started dating in 1986. They knew each other through the department store.

They both retired in the late 1980’s, and spent a good deal of time after that volunteering for a numerous of causes such as teaching English to adults, and planning events for Alzheimer’s patients at a nursing home. (The latter is rather ironic.)

They also were very active in a variety of church activities. (My mother had converted to Catholicism after they were married.)

Question: When did your parents become covered by the HMO? Why did they choose that coverage? Why do they keep the coverage?

Answer: They received their insurance through the department store and I think that they enrolled in the HMO’s medicare plus choice plan in 1989. Throughout their time at the department store, their insurance changed hands, but the my parents did not initiate the changes. I made the decision to stick with the HMO because I had battled them in the late 1990s, and won. We did not have much grief from then until last year. The other reason is that they could afford the HMO plan. (That is somewhat of a moot point because good luck trying to get the benefits.) Several months ago we applied for Medicaid for my mother, but we have not heard yet whether she has been approved.

Question: What was your mother’s medical state on 4/9/03?

Answer: My mother has a complicated medical history. She takes medications for dementia, tremors, epilepsy, and chronic pain. She has never been diagnosed as having Alzheimer’s Disease or Parkinson’s Disease. These diseases have been ruled out. Her dementia is thought to be a symptom of small infarcts near the surface of her brain. The tremors and seizures are thought to be due to several instances of brain trauma, an aneurysm (1973) and a meningioma brain tumor (1994).

Historically, the HMO has not treated my mother with concern for a quality of life. Several of her previous primary care physicians maintained that her dementia and physical deterioration were impossible to treat. I disagreed, and after several years of fighting, I received a referral for my mother to see a specialist in Neuropsychiatry a nearby University Medical Center. The neuropsychiatrist prescribed the drug Reminyl for my mother. Simply put, Reminyl acts to improve memory function in dementia patients.

One of the problems experienced by my mother is that she had been prescribed many medications by a variety of physicians, without any coordination of treatment, or even a treatment plan. There has been no communication amongst the various physicians. Consequently, the various medications exacerbated my mother’s condition, by having a potent sedative effect on her. Some of the more potent of these drugs were the ones prescribed to prevent seizures. Accordingly, we went outside of the HMO system, and my mother started seeing the head of the Epilepsy Center at a nearby hospital.

For several years, the neuropsychiatrist and the epilepsy specialist and myself, have worked together to improve my mother’s health, and the quality of her life. We did this by carefully monitoring her medication, and the toxicity of her medication (blood levels), and making sure that she took the minimum amount of medication that she needed. The progress that she had made up through March 2003 was remarkable. I was even able to leave her by herself for short periods of time at the local library. People commented how much more alert and aware she had become.

She was feeling and acting very well.

Question: What happened on 4/10/03?

Answer: On April 10 2003, she awoke complaining of a particularly painful lower back. On Sunday April 13, 2003, she was in so much pain that I arranged to have her transported by private ambulance to her network hospital. The private ambulance personnel took her to a closer hospital first, because they were concerned about her immediate need for medical assistance. At this first hospital she was given an EKG, and she was found to have an irregular heartbeat. She was then transported to her network hospital, and admitted to the coronary unit.

On the morning of April 14, 2003 I had a heart attack. Even so, I spoke with her attending physician, while I was having the heart attack, and gave him my mother’s history. I had also written her history on paper, and given it to the ambulance personnel, but this had been lost.

I drove myself to get medical assistance after I took my blood pressure, and found it to be dangerously high. I was transported from one hospital’s ambulatory unit to another hospital. I was immediately given an angioplasty. However I still maintained contact with my mother’s hospital. I did speak with her attending physician. He told me that he had taken her off of the Reminyl, because it caused her to have anorexia. I explained to him that she had been taking the Reminyl for several years, and that her appetite had not changed. Her poor appetite had been caused by the pain. I asked him to consult with the neuropsychiatrist and the epilepsy specialist. He refused to consult with them. He also stated that the only treatment for my mother was physical therapy. X-rays had shown that she had a compression fracture in her lower back. She was transported to nursing home M on April 15, 2003.

The only reason that she was sent to this particular nursing home is that the HMO has a contract with them. One of the doctors in her primary care physician’s office is the medical director at nursing home M, and so he was her attending physician there. (Her primary care physician has not been involved with treating my mother ever since my mother was hospitalized.) He reluctantly put her back on the Reminyl per my request, and he did speak with the neuropsychiatrist. However, the medical director also prescribed a combination of drugs that caused her to become intoxicated. She could not talk without slurring her words. She was like a zombie. The nursing home personnel failed to advise us as to her failure to participate in physical therapy in a timely manner. We found this out several days after she had not participated, from one of the part time physical therapists. We also were belatedly advised that she had been allegedly biting and kicking the staff. There was no way that she could participate in physical therapy because she was so doped up, and yet she was still in pain. In spite of her history, she was expected to benefit from the physical therapy. This “therapy” was one of the grievous errors made by the HMO.

My mother was scheduled to be discharged on May 1, 2003. I would not take her home because she was very intoxicated. They readmitted her as a “favor”. I asked a nurse if my mother’s blood work was normal, and she said that all of her vitals and blood work were normal. In fact my mother had a bladder infection, which could contribute to her diminished cognitive state. (We found this out only after she was admitted to nursing home M+SF) My mother was finally discharged on May 3, 2003. The HMO insisted that nothing more could be done for her. During her stay at nursing home M, my mother was rendered incontinent, and lost her ability to walk. All of the progress that she had made over the past several years was eliminated. The over medicating was the biggest factor.

Question: What were the interactions like between you and the staff at nursing home M?

Answer: The interactions between myself and the staff at nursing home M were troubling to me. Even though my mother was obviously intoxicated, they denied it. When I pushed for accountability they became defensive.

On or about April 23, 2003, I visited nursing home M, and asked to speak with somebody (with authority) about the condition that I found my mother in. The time was on or about 6pm, and I was told that the people that I needed to talk with had already gone home. I then was approached by a woman, who declared herself to me to be the insurance liaison, and a RN. She offered to ask the HMO if they would pay for an extension of my mother?s therapy time. I said that I was concerned about my mother’s intoxication. The liaison insisted that nothing else could be done, and so I also said that I intended to file a grievance with the HMO against nursing home M. The liaison became irate, and she told me to leave or she would call the police. She instructed one of her staff members to call the police, and they did so. I waited in the entrance area, along with my stepfather, for the police to arrive. The police did not make any arrests, and merely made sure that there was no problem. They did not remove me from the building, and there is no police report. The statements by the liaison that I threatened her, and that there is a police report, are false.

April 23, 2003 is the date that the “nurse’s notes” began stating that my mother was hitting and pinching the staff.

The notes support what I have said all along: that she was in no condition to participate in physical therapy. I contend that one of the reasons for this was the effect that all of the medications had on her.

Nursing home M did not keep me advised on a regular basis about my mother. Since my mother was there for physical therapy, they should have supported my concern about my mother’s intoxication, instead of denying it.

I cannot find any reports of my mother’s blood levels of phenytoin, primidone, and Phenobarbital. These needed to be monitored closely. I cannot find a record of what her weight had been on May 1, or upon her discharge from nursing home M on May 3, 2003.

I had been advised on May 1, 2003; by a registered nurse at nursing home M; that my mother’s lab tests had all been normal. In fact she had a bladder infection! This may have contributed to my mother’s condition. But we only found out about it after she had been discharged from nursing home M.

The notes support my claims that my mother had not eaten sufficiently at nursing home M. I have no doubt that her intoxication contributed to her poor appetite. This is another failure of nursing home M to maintain her well being.

We doubt that my mother was combative as stated in the “nurse’s notes”, and yet the notes clearly report a deterioration of her condition. We acknowledge that she has dementia (not Alzheimer’s), but her cognitive condition had been improving under the care of the epilepsy specialist, and the neuropsychiatrist. She regressed during her hospitalization at nursing home M.

Upon her admission to nursing home M, my mother had been described by such words as nice lady, cheerful, and cooperative. Upon her discharge, my mother was only described as being confused and disoriented, as well as hitting, pinching, and refusing to get up.

If that is not deterioration, I do not know what is.

And consequently she needs so much assistance that she can no longer live at her home.

Question: When did you file your first grievance on behalf of your mother? With whom was it filed? What were you hoping would happen as a result of the grievance? What was the result?

Answer: I filed the grievance April 23, 2003, with the HMO. I did speak with several HMO employees and I elaborated about the problems at nursing home M. I was told by a grievance and appraisal analyst at the HMO that I need not proclaim in writing what I wanted as a resolution to the grievance.

I told him that I wanted somebody to intervene with the treatment that the nursing home was giving my mother. I also explained my concern about the fact that her attending physician at the network hospital refused to consult with the neuropsychiatrist or the epilepsy specialist. I told him that she was to drugged to do anything.

The grievance I filed follows:

Look at medical records, and you will see that from the early to mid 90’s, she had been diagnosed with a variety of ailments that she has never been treated for. Such ailments would include spinal problems, and chronic pain.

Currently she is a patient at X and was admitted to on April 14, 2003, due to an irregular heart beat. She had initially been sent to the hospital, because she was unable to move due to extreme pain.

It was determined through x-rays, that she had a compression fracture of her back.

She has non-Alzheimer’s dementia, and has been treated for this by X for several years. He has prescribed Reminyl but was taken off of the Reminyl, by X without consulting X as we requested. He did so because he said that Reminyl is notorious for causing anorexia. Her eating habits have been the same for 30 years. There has been no change in her eating habits, since she started on Reminyl.

Late last week she was transferred to X in order for her to receive physical rehabilitation. She had been a patient at X in January-March 2003. Yesterday I spoke with a social worker at X. She informed me that she will be discharged on Saturday, April 26, 2003. I told her of my concern about the quality of care that X was receiving, in that her pain issues were not being addressed, and that her dementia was not taken into consideration regarding any kind of therapy. X informed me that she had been put on a pain patch.

Due to my stepfather’s and my individual illnesses, April 22, 2003, was the first time that visited with . I dropped him off in the afternoon, and arrived back to take him home at 6pm. At this time he advised me that was declining her physical therapy.

X erred in that they did not notify me that X was not getting physical therapy.

X erred in that there were no medical personnel present last night, who could answer my questions about this.

Instead I was referred to a woman who handles insurance claims at X. She suggested , among other things, that I was at fault because I didn’t ask about my mother.

X erred in that they have failed to communicate with me about my mother’s treatment in general.

X erred in that they have periods that they are understaffed, which has resulted in extremely long response times, to patient’s requests for assistance.

X erred in that they have not provided the therapy that has been prescribed for , and that her pain issues, and dementia, have not been factored into the plans for her therapy.

X erred in that the insurance claims employee made a false police report about me to the police, suggesting that I had threatened her, when in fact she became angry because I persisted in trying to find out why I wasn’t notified about my mother’s care. She also offered to extend my mother’s stay, but did not acknowledge my concern about the efficiency of the care that my mother has been receiving.

Question: What’s your mother’s current medical state and where is she currently living?

Answer: My mother was admitted to nursing home M+SF on May 5, 2003, where she is still residing today. Unfortunately the first doctor to see her there put her on yet another drug because of her tremors. He also ignored her history. She already had been given medication for her tremors several years ago. She was now so intoxicated that she wouldn’t eat, drink, or get out of bed. The nursing home staff had to hook her up to an IV for fluid intake, and was planning on feeding her with a tube.

And then sometime in the beginning of July, I finally succeeded in having the second doctor to see her at nursing home M+SF, take her off of most of the medication that she had been given since April. She rebounded literally overnight. She is now much better, but no where near where she was physically and mentally prior to April 13, 2003.

Question: Are the neuropsychiatrist and the epilepsy specialist currently treating your mother? If so, does the HMO cover that?

Answer: No, neither of them are treating her now.

It took me more than a year to get a referral from the HMO for my mother to see a neuropsychiatrist. This is a real long story. I went through a lot to get it…a real lot. So this was covered mostly by the HMO, but the epilepsy specialist was out of my folk’s pocket. (The PCP appeared to have her feelings hurt by this. Really.)

Because the attending physician at the network hospital and the attending physician at nursing home M did not know my mother, they had no basis to assess her condition when they saw her. The hospital attending’s refusal to consult with the neuropsychiatrist or the epilepsy specialist prevented him from learning about how well she was doing just prior to her hospitalization. The attending physician at nursing home M also refused to acknowledge her condition prior to seeing her at the nursing home, even though he had seen her on or about April 7 in his office.

Question: What’s your step-father’s current medical state and where is he currently living?

Answer: My stepfather started complaining of weakness and numbness, as well as headaches, in the summer of 2002. His PCP referred him for cardio and neurological assessment. Fortunately his tests came back negative, but his symptoms worsened.

On March 17, of last year, during an appointment with my mother’s neuropsychiatrist, my stepfather started to feel bad. That doctor asked him a couple of questions, and then asked if he had ever been examined for cervical stenosis. My stepfather was eventually diagnosed with cervical stenosis. (Earlier in the year I had asked a neurologist if my stepfather could be suffering from spinal problems, but she dismissed that possibility. The neck is connected to the spine etc.)

My stepfather had cervical surgery in June of 2003 at his network hospital.

His surgeon informed me immediately after my stepfather’s surgery, that he had requested that my stepfather be placed in the specific rehabilitation program at the network hospital. The staff at the hospital said that my stepfather would have to be approved via assessment in order to be placed in the rehab program. We were subsequently told by a branch of the HMO that my stepfather had been found not to be able to undergo the acute rehab. Thus I did not file an appeal. Several weeks ago (March 2004) I found out that he had been OK’d for admittance by the rehab personnel, but the HMO wouldn’t pay for it because it was out-of-network.

My stepfather was discharged from the network hospital and admitted to nursing home SF on or about July 4, 2003. While he was at nursing home SF, my stepfather received physical therapy about twice a day, but not on a consistent schedule.

On August 18, 2003, via a phone call with the HMO nurse in charge of his case, I was told that the earliest he would have his benefit cut would be August 29, 2003. On August 20, 2003, I received a phone call from the HMO saying that he was having his benefit cut on August 22, 2003, and unless he was going to pay for his stay after that date, he needed to be discharged from nursing home SF on August 22, 2003. I was then told by the HMO nurse in charge of his case on August 20, that at a meeting on August 19, 2003, my stepfather had been evaluated as having reached a plateau as far as his therapy was concerned.

On or about this time I received a letter to my stepfather from the HMO dated August 20, 2003 stating:

“On 8-20-03, we reviewed your medical records and have concluded that you are no longer eligible for skilled nursing care. Therefore, as of August 22, 2003, [the HMO] will not pay for any nursing home charges.”

“The clinical rationale/criteria used in making the determination is available in writing upon request.”

I made both verbal and written requests for such information, but I never received any.

On August 20, 2003, I filed a 72 hour expedited appeal with the HMO, via the designated phone number, because I believed that my stepfather was being discharged from nursing home SF prematurely, and that doing so would have a long term adverse effect on his well being. I asked to have the appeal deadline extended to 14 days so that the HMO could get input from the surgeon. (On or about August 20, 2003, the surgeon had reiterated to me that the therapy that my stepfather had received had been inadequate.)

My stepfather was discharged from nursing home SF on August 22, 2003. He could not walk by himself and he was incontinent at the time of his discharge. Several weeks later I received a letter from the HMO dated September 8. 2003, stating:

“Your concerns have been referred to our Quality Management Department for formal investigation.”

Shortly after receiving this letter I spoke with a representative of the HMO, and he advised me that they didn’t have to disclose anything to me. Subsequently my other requests for an explanation from the HMO went unanswered.

Contrary to the prognosis made by the HMO about my stepfather, he is now able to walk etc, but not as a result of the appeal.

In March 2004 I received a letter from the HMO dated March 12, 2004, stating:

“This is to acknowledge receipt of your request for reconsideration (appeal) of denied claim(s)/care dated August 22, 2003 through November 22, 2003.”

At this time a representative of CMS (The Centers for Medicare and Medicaid Services) informed me that the HMO was considering paying for my stepfather’s physical therapy for the time period between August 2003 and September 2003. But when I asked the CMS representative what could be done regarding the HMO’s failure to notify us of the true reason as to why my stepfather was denied his benefit for acute rehabilitation at the network hospital, the treatment that my stepfather’s own surgeon had requested, the representative told me:

“We can’t do anything about a level of service that you disagree with.”

I disagree with the level of service because it was not what the doctor had ordered.

1. The HMO was obligated to provide my stepfather with the treatment requested by his surgeon, unless the HMO had determined that the treatment was medically unnecessary. In a case such as this, we would have the right to appeal the HMO’s determination. They did not determine that acute rehabilitation was medically unnecessary. They denied this benefit because it was out of network. The HMO was obligated to find a provider within the network. If they could not do so, then they were obligated to go out of network.

2. My stepfather was discharged prematurely from nursing home SF. I filed an expedited appeal in a timely and proper manner. I believe that the HMO broke the law when they killed that appeal, by changing it over to a grievance.

3. My stepfather should not have been liable for any custodial nursing home and therapy expenses, because he was not accorded the proper rehab in the first place. We think that he would not have needed to stay in custodial care if he had been accorded acute rehabilitation. Such expenses should have been paid for via his HMO benefits.. We wish for them to honor their contract with my stepfather by paying these benefits.

4. The HMO has informed us that they will pay for my stepfather’s stay at nursing home M+SF, but only for the period in which he received some limited sub-acute physical therapy.

Question: Was the neurologist who said your stepfather couldn’t have spinal problems an HMO neurologist?

Answer: The neurologist who discounted the possibility that my stepfather’s problem was being that of his bones, is a network doctor. I think that we only saw her twice.

Question: Was the surgeon who operated on your stepfather in network?

Answer: His surgeon is a network doctor.

Question: If the network hospital where your stepfather had surgery was in network, why was the specific rehab program at that hospital that the surgeon wanted out of network?

Answer: We have been told that that specific rehab program at the network hospital does not have a contract with the HMO.

Question: How did your stepfather get to nursing home M+SF?

Answer: My stepfather’s journey went like this:

From the network hospital (where he had his surgery) to nursing home SF (where he had the sub-acute physical therapy) to nursing home M+SF. I arranged for him to be placed into nursing home M+SF because that was where my mother was at. It is important to note that at this point in time he could not walk etc.

My stepfather was sent to nursing home SF because I did not want him sent to nursing home M, which was where they would have sent him after his surgery after denying him his acute rehabilitation.

My stepfather had his surgery at the network hospital in June 2003, and was admitted to nursing home SF on July 4, 2003. He was discharged from nursing home SF on August 22, 2003, and admitted to nursing home M+SF on August 22, 2003. He was discharged from nursing home M+SF on November 22, 2003, and returned to his home at that time.

Question: When did the HMO change your appeal about your stepfather leaving nursing home SF to a grievance? How were you notified?

Answer: The HMO sent me a letter dated September 8, 2003, stating that they were submitting the information that I had given to them in the form of an appeal, to their Quality Management Department, thus changing it into a grievance. I was appealing his loss of benefit at nursing home SF.

Question: What was done by the HMO about the grievance filed 4/23/03?

Answer: It was investigated, but according to a representative of the HMO, they don’t have to tell me anything. Even though the guidelines appear to me that the HMO is supposed to notify us of a conclusion to the investigation, we have never received any conclusions.

Question: Is nursing home M+SF in network?

Answer: No.

Question: Does the HMO pay for nursing home M+SF for either your mother or your stepfather?

Answer: No, it’s providing them with custodial care and the HMO doesn’t cover custodial care. My folks are liable for the first 10 days in a skilled nursing environment, at $75 a day, after that the HMO is liable. We received letters announcing that the benefits are being stopped. They do that when they determine that the therapy has done all that it can. I have the right to appeal such a decision if I feel that it is premature, harmful to my folks etc. That is what I did in the case of my stepfather. That is the appeal that they changed into a grievance. I did not file a formal appeal on behalf of my mother because I thought that the grievance that I had filed would deal with the problem.

Question: Why was your mother discharged from nursing home M?

Answer: The HMO stopped her benefit so we had to get her out of there or else she would have had to pay for it.

Question: What do nursing home M and nursing home SF have that nursing home M+SF doesn’t have?

Answer: The nursing homes themselves don’t necessarily have different facilities. My mother was in nursing home M so she could get some physical therapy, but she was so doped up due to the drugs the attending physician at her network hospital plus the attending physician at nursing home M put her on that she was like a zombie. So they made it impossible for her to take advantage of the resources available, and then cut off the benefit. She went to nursing home M+SF for custodial care, which is not covered by the HMO. Before her hospitalization at her network hospital plus her time at nursing home M she was able to live at home. She did not need the level of custodial care available at nursing home M+SF. That’s no longer true.

My stepfather was at nursing home SF for physical therapy, but he didn’t get the full benefit of it because the HMO made it impossible for him to get the acute rehabilitation his surgeon thought he needed right after his surgery. Had he received acute care rehabilitation immediately after his surgery he probably could have gone home from nursing home SF without needing to go to nursing home M. CMS got involved in this, and as a result the HMO agreed to pay for his first 28 days at nursing home SF.

Question: You mentioned retaliation against you for the grievances and appeals you’ve filed. What kind of retaliation have you noticed?

Answer: In a letter dated 3/24/04, the HMO wrote “has received a letter from your Primary Care Physician (PCP), asking that we assist you in selecting a new physician due to a breakdown in the patient/physician relationship.”

The head nurse at the now former PCP’s office told me that the PCP had not initiated dropping my folks, but that it was because I had been “threatening” her attending physician at the network hospital and her attending physician at nursing home M. She also told me that there was a “rumor going around” that I had thrown a chair at a social worker at nursing home M.

My mother’s attending physician at the network hospital and the attending physician at nursing home M were the two doctors that I had filed a complaint against with the Illinois Department of Registration. That is the agency that gives and takes away licenses in Illinois. It is obvious that I had been the subject of some conversations. In other words my folks got dumped, and I’m being slandered, because I complained.

Question: Is there anything else you would like to add?

Answer: I do not remember if I mentioned earlier that the two doctors, the attending at my mother’s network hospital, and and the attending at nursing home M, both were reluctant to consult with the specialists that new her. the attending at the network hospital refused, and the attending at nursing home M did speak with the neuropsychiatrist, but never the less insisted on giving my mother Parkinson’s Disease medication, and keeping her doped up. That is what I believe started this whole mess.