By Caryn Isaacs: One of my clients, Kenneth Natton, has offered to allow me to share their story. It is an example of what I call “breaking the patient out of the hospital.”
I first met Eilish Natton when she was searching for help for her son, who suffered from Turret’s Syndrome. Eilish and her son, Ken Jr., traveled into New York City and to the other end of Brooklyn, by train, to find the therapies that would eventually see Ken graduating from college. Eilish and Ken understand how to stand up to authorities that say it can’t be done. After all, they had traveled across the sea from Ireland to find a better life. When school superintendents refused to mainstream her sons, Eilish fought them and won. Both sons now hold down good full time jobs. Eilish always had the time and energy to help others in her community. In 1989, she and Ken Jr. were interviewed for my CTV show, Self Health, regarding health benefits. We didn’t realize then that Eilish was showing the first signs of Parkinson’s. I was there when the Doctor’s at NYU, who were just learning how to diagnose the early stages of Parkinson’s through gait analysis, tried a new medication from Canada, that was not FDA approved yet, Sinamet.
Then, five years ago, Ken contacted me because Eilish’s doctors had given up hope and told Ken to start planning for permanent nursing home care. I put the Natton’s in touch with Dr. Alexander Aronov, an Internist and Oncologist who specializes in cases where patients have been told to get their affairs in order. Dr. Aronov uses the Bi-Digital O-Ring method of diagnosis and treatment along with nutritional supplements, chiropractic, medical massage and acupuncture. Under his care, Eilish has come back from a mostly rigid non-responsive state to a full life of vacationing in the Pocono’s and talking on the phone with friends. She wasn’t going to be running any marathons, but she could walk from the car and go to the bathroom herself. She was also eating solid food, that she and Ken delighted in finding on their sight seeing tours throughout New York and Pennsylvania, where they have a chalet.
Unfortunately, she had an accidental fall, coming from the car this summer. It was the kind of accident that could have happened to anyone. She and her husband weren’t afraid when the orthopedist recommended a hip replacement, because he said this would be the only way she could walk again. The surgery went well and Eilish entered a rehab facility. Unfortunately, this is where the story goes bad. The facility doctor’s were not familiar with the kind of therapy Eilish was getting for the Parkinson’s. They refused to recognize any alternative than the traditional medications and physical therapy, which we already knew didn’t work for Eilish. Then after months of inactivity, they called Ken in to insist that he place Eilish in their Nursing Home for the rest of her life. They explained that they would handle all the paperwork to allow Eilish to use all the family’s assets, and then to qualify for Medicaid.
Ken called me, and together we met with the administration and doctor at the facility. We explained that we wanted to get Dr. Aronov’s opinion before making any decision. We agreed that Ken would retain a full time home health aide, until we could establish how and if Eilish would recuperate.
The administrator told us that we were doing the wrong thing for the patient. She claimed that the insurance would not pay for home health care. She insisted that Eilish was covered under a Medicare HMO, even though we showed her in the case management papers that Ken’s company paid for indemnity coverage, since Eilish is only 61 and not disabled. I asked for the name of the case manager so that I could discuss the coverage. The administrator said she could only discuss that with family, so Ken asked that he be told. She said that was against office policy. Next, the administrator claimed that Eilish had a wound that required nursing care. She said Eilish would require an injection and Ken would not be able to administer it. We later learned that the injection was a blood thinner required for long term Nursing Home patients who are bed bound. They also told us that it required two people and a machine to move Eilish. In the facility she was in diapers and fed pureed food.
After meeting with the physician in charge, the first time Ken met this doctor, they said that if Ken did not sign Eilish in for long-term skilled care, they would report us to social services. We said we needed to discuss this with Eilish.
Eilish said that she had not been examined by the physician; only asked how she was. She was sure that there was no further wound care being administered. I asked the aide assigned to Eilish in the room if she was aware of the wound care, or if she thought more than one person would be required to move Eilish if she were to go home. The aide said she thought Eilish would be much happier at home, and that a medical assistant could certainly tend to all her needs. Eilish believed she could stand. Ken took her hands and I stood behind her. Up she came and stood on her own. I felt around, and didn’t find any bandages. Eilish did not have any pain.
Eilish said, “tell them to get my clothes, I’m going.” Well, after some more cat and mouse games, to get Ken to sign a release saying he was removing the patient against Doctor’s recommendations, Ken took Eilish home. The administrator also tried to get Ken to approve delivery for a hospital bed and wheel chair. We asked them to hold off. A neighbor helped him manage the outside stairs and then took measurements to help install a ramp. He also suggested how the downstairs bath could be enlarged to accommodate a walk in shower.
The home-health agency recommended by the Rehab-Nursing Home administrators only provided short-term care. Ken opted for a local agency, which specialized in chronic care. I visited Eilish at home to meet the aide assigned to her and to follow up on the social services review. The aide said she was delighted with the accommodations, including a comfortable pull out bed for her to sleep in while Eilish and Ken slept in the next room on another. The full kitchen on the same floor makes it easy to get meals and snacks. She was already helping Eilish to eat again, by massaging her hands. Eilish was thrilled to be eating real food again, including her favorite cookies. We started searching the Internet for companion wheel chairs and other home assistive devices.
The case manager from Blue Cross/Blue Shield called to say that a nurse would come to review the home situation. A few minutes later, the home health agency affiliated with the Nursing Home called to say they wanted to come for a follow up. We never heard from Social Services. Eilish saw Dr. Aronov the next day. He resumed her therapy and she is progressing every day now. Blue Cross/Blue Shield is paying their part and Ken feels he can afford to pay the out of pocket for the aide. This is a short version and you don’t get all the laughs we had listening to Eilish give her opinions of the situation. Ken and Eilish hope that by telling this story, others will have the courage to stand up to the authorities if they don’t agree with the prognosis.
