Phillip’s parents told my attorney-client that I was a gift from God, because they finally had someone who would listen, understand and really hear what they had to say.
My first week in San Diego, a new attorney-client said he hoped I had a strong stomach. Then he asked me to consult on a heart-wrenching case. He wanted me to video and interview his client in his home environment with his family.
Though my attorney-client had given me an overview of Phillip’s saga, I wasn’t prepared for what I saw. At the time Phillip was a 20-year-old autistic man tied to his bed in 4-point restraints to prevent self-abusive behavior.
His face was mauled, literally torn to shreds, with open, self-inflicted wounds. He was clearly a danger to himself. In addition, he has a neurogenic bladder condition that might eventually require a kidney transplant.
In spite of Phillip’s complicated health problems and the need for 24-hour care and supervision, his parents had no respite care available. They couldn’t afford the level of care he required, and Phillip was extremely fearful of strangers. His parents were sleep-deprived and exhausted, both physically and emotionally. His father was on disability due to health problems, and his mother was on disability because of fibromyalgia.
Before the Nightmare – A Happy, Manageable Person
Although Phillip was nonverbal, his parents, particularly his mother, were good historians and shared the details of his story.
Until January 1999, Phillip was active, happy and easy to manage. He attended a special school owned by a private foundation and took his lunch to school each day. Though his language skills were minimal, he was able to communicate his needs through picture boards, pointing or making noises. Phillip was able to dress himself, except for his shoes, prepare himself a snack in the kitchen, toilet himself and wash himself if handed a washcloth. If he was tired or not feeling well, he would allow either parent to help him wash.
Phillip functioned fairly well in the community, going bowling with school groups or on outings to the park or the beach. He liked to be social and participate in activities. He did volunteer litter abatement at the stadium. Never a fearful person, he slept alone in his room at night.
For many years Phillip had been maintained on Mellaril with no side effects. In January 1999 his psychiatrist of record, who was the psychiatrist employed by the school, decided to switch Phillip to a newer generation drug called Risperdal®. Its long-term use does not produce the cardiac complications and side effects (tardive dyskinesia and neuroleptic malignant syndrome) that Mellaril has been known to produce. Although Phillip had none of these complications or negative side effects, changing to a newer drug is common practice and within the accepted standard of care. However, what followed became a nightmare for Phillip and his family.
The Nightmare Begins – Mounting Symptoms, Unresponsive Physician
Within weeks of the medication change, Phillip began slapping his legs with enough force to bruise his thighs. At first his parents thought this was a behavioral problem. He also experienced increasing sleep disturbances. When Phillip’s mother called the psychiatrist, rather than examine Phillip, he merely ordered an increase in the Risperdal®.
Four or five days later, the pattern of facial abuse began. Phillip’s parents assumed he was in pain. When he was younger, he would hit himself if he was sick or in pain. They took him to the dentist to check his teeth and gums, but no problem was found. Once again, the psychiatrist was notified, and once again, his response was to increase the Risperdal® rather than thoroughly assess Phillip. In addition, he prescribed Trazodone to help Phillip sleep.
Shortly thereafter, Phillip’s parents reported that he had facial tics. A neurologist suggested possible seizure activity and prescribed Tegratol®, but the tics did not stop. By August 2000, the neurologist told Phillip’s parents to stop using Risperdal®.
For five months after prescribing the Risperdal®, the psychiatrist did not see Phillip. He heard about the symptoms from Phillip’s parents, but he did not ask to see Phillip during school hours nor ask his parents to bring him in during their appointments. They kept telling the psychiatrist there was something wrong with their son, but the doctor remained unresponsive.
From Nightmare to Full-Scale Crisis
Between August and October of 2000, Phillip lost 40 pounds. The foundation formed an emergency crisis team to get involved in his care. He was no longer taking Risperdal® but continued to have lingering effects from the medication. His behavior was out of control, and he was a danger to himself.
In October the crisis team social worker suggested that Phillip needed to be hospitalized. His parents took him to a local hospital ED. The ED staff did not feel equipped to handle him, so they sent him by ambulance to another facility where they thought the psychiatric unit was adequate.
Upon entering the psychiatric unit, Phillip’s mother, who is his conservator, filled out the admission forms indicating he had a previous anaphylactic reaction to Haldol®. Private duty nurses were assigned to him. The admitting psychiatrist wasn’t present, but Phillip’s mom spoke to the doctor by phone. She again emphasized Phillip’s previous anaphylactic reaction to Haldol®.
From Crisis to Life-Threatening Trauma
After Phillip was settled in his room and secured in his restraints, a hospital nurse entered and gave Phillip an injection. When his mom asked about the medication, the nurse said it was Haldol®. Shortly thereafter, Phillip became short of breath and began twitching. His parents insisted that the nurse contact the physician immediately. The doctor ordered Benadryl to counteract the Haldol®. He told the parents that he thought Phillip probably had “outgrown his bad reaction to Haldol®.” After Phillip fell asleep, his parents went home for the night.
The next morning, when they returned, Phillip did not look well. The private duty nurse reported that over her protests, the hospital nurse had given Phillip two more doses of Haldol®, one during the night and one just minutes earlier. As his parents watched, he became cyanotic, began to jerk and then became rigid. His eyes rolled to the back of his head. They were asked to leave the room. Their understanding was that he had a cardiac and respiratory arrest. Since no ICU beds were available, Phillip was rushed to the emergency room.
After this incident, Phillip’s mother spoke to the hospital’s patient advocate. On the advocate’s advice, she contacted the state licensing board, which investigated and cited the hospital for improper record keeping and charting practices. I was able to obtain a copy of that citation. Phillip’s parents also requested that his treating psychiatrist be replaced with a new one, who is still Phillip’s treating psychiatrist today.
A Damaged Young Man
Since those events, Phillip has never returned to his prior level of functioning. After his discharge from the hospital, his parents were told that he had neuroleptic malignant syndrome (NMS). He then developed neurogenic bladder syndrome which has not resolved.
Behaviorally, Phillip is a changed and fearful young man.
Phillip’s psychiatrist hypothesizes that he has post traumatic stress disorder (PTSD). He believes Phillip’s experiences, first with the Risperadol, then with the Haldol®, were both really acute NMS episodes, and the residual effects are related to NMS.
Because Phillip is autistic, he cannot be treated for PTSD as other patients would be. While he might relearn some of his old skills, no one believes he will achieve the baseline level he had in January 1999. Currently, he is lethargic and inactive, spending most of his days lying around, playing with small objects and showing little interest in the outside world.
My Role as a CLNC® Consultant
That first day on the case, I spent four hours with the family, allowing them to tell their story, videoing Phillip and taking copious notes. I also took all the documentation they had, including past photos and videos for comparison.
Phillip’s parents mentioned that the director of family relations, a counselor at Phillip’s school, had showed a special interest in him. They were so grateful that this man spent extra time with Phillip and took him special places, just the two of them, after school. This information raised a red flag.
I had my attorney-client request the following:
Once all the records arrived, my sleuthing as a Certified Legal Nurse Consultant began. I confirmed Phillip’s early childhood method of communicating when he was in pain. His school records indicated self-injurious behavior (SIB) when he was sick or in pain. However, this usually took the form of slapping his legs or hitting his head. Holding his hands or occupying him with other activities would stop the SIB. Before January 1999 he had never mauled his face causing open wounds and bleeding. After January 1999 his screaming and SIB disrupted the classroom, sometimes requiring restraint by several adults or by soft mechanical restraints to prevent further self-injury. At this point the school informed Phillip’s parents he would not be allowed to stay in the program if he spent more than fifty percent of the day in restraints.
My CLNC® services included:
An important part of my role was identifying deviations from the standard of care. I found that the following acted below the accepted standards in their community of practice:
My Report to the Attorney-Client
My report on this case included the following components:
My Role as Liaison to the Family
The attorney asked me to be his liaison with the family. Before I joined the case, their only sources of support were the physicians and crisis intervention team, who, while concerned, were always busy. Phillip’s parents told my attorney-client that I was a gift from God, because they finally had someone who would listen, understand and really hear what they had to say. Just hearing that, I knew my role as a CLNC consultant was worth every minute spent.
Phillip’s parents have required a tremendous amount of support and TLC. They call me frequently with updates on Phillip and sometimes just to talk. They often need a sounding board.
A Surprising Twist
A few months ago as I was finishing my report and writing the cover letter, a local news story caught my attention. A man was arrested for participating in an international child pornography ring. For 14 years he had been a family counselor at a private school for handicapped children. I did a double-take and went back to Phillip’s school records. Sure enough, this was the same man who had spent so much time alone with Phillip on private outings after school, pleasing Phillip’s parents with his special interest in their son. My mind was flooded with thoughts: Why did Phillip suddenly refuse to let his father help him bathe? Why was Phillip suddenly so afraid? Were these developments only related to the medication change and the NMS?
I added this information to my cover letter and, after talking to my attorney-client the next morning, sent him a copy of the news story. He was shocked and asked me to call the parents. Before I had a chance to do so, they called me. They had already heard. We will never know if Phillip was hurt by this man, because Phillip cannot tell us. But now looking back, Phillip’s dad remembers some off-color remarks this family counselor made that were rather incriminating.
At the risk of opening Pandora’s box, the attorney decided to bring this information about the counselor into the case. This decision was well worth it in the end.
Finishing and Finding Rewards
After many hours of additional work, we finally reached the settlement stage. No one wanted to go to trial. Phillip and his family have suffered and will continue to suffer because of his condition, but Phillip’s medical care will now be subsidized by money he won through this case. In addition, his parents will be able to obtain adequate respite care. Phillip’s prognosis and future are guarded.
I feel great knowing that, as a CLNC consultant, I was able to help ensure that Phillip will have the care he needs and that his parents will get some rest. I feel blessed to know these people. They let me into their lives and their hearts.
My attorney-client told me that without my CLNC services, he never would have gotten through the school records or understood what to look for. He would not have made the connection about the family counselor. Much of this case was like a jigsaw puzzle. This is what I love to do, and it makes me proud to be a CLNC consultant!
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