http://mv-voice.com/print/story/print/2007/06/29/patient-checks-out-8212-five-years-later


Mountain View Voice

News - June 29, 2007

Patient checks out — five years later

Bureaucratic loophole meant Jimmy Campbell would be vulnerable if he left El Camino Hospital

by Alexa Tondreau

Last Tuesday, on the sixth floor of El Camino Hospital's medical care unit, a small gathering of nursing staff and others came together to celebrate the release of one of the hospital's best known, and longest residing, patients.

After five and a half years as an inpatient at El Camino, Jimmy Campbell finally was able to go home to live with his parents, Jim and Glenna Cecchini.

"It's totally surreal. It's miraculous," said Glenna Cecchini. "We almost couldn't believe it was happening, after what we'd been through."

If it had been up to the Cecchinis, Jimmy would have come home a long time ago. Instead, they found themselves in a long struggle with a health care system that couldn't accommodate the unique needs of their son.

Jimmy, who is 43 years old, was diagnosed with an extremely rare neurological disease when he was 29. Rapidly, the disease destroyed his motor functions, so that he was confined first to a wheelchair and then a bed.

"He's cognitive. He's a man trapped in his body," Jim said.

By the time he was 38, he had become so incapacitated that his parents were forced to admit him to El Camino, where he came to require 24-hour skilled nursing care, to closely monitor his eating, breathing and especially his swallowing.

A side effect of Jimmy's disease is that he cannot properly swallow, and so his throat needs to be suctioned frequently to prevent him from choking. It is this particular feature of his condition that created a snag for Jimmy to receive full Medi-Cal coverage for at-home, 24-hour care, which costs about $250,000 a year.

On a technicality, officials in the Department of Health Services did not qualify the procedure as a medical treatment, and so would not give the Cecchinis the full amount of coverage they needed. Instead they offered $75,000 a year.

In turn, Jimmy's doctor would not discharge him from the hospital until he had adequate care, a position the Cecchinis respect because the doctor's opinion was that he would have died if he had been assigned to a nursing home.

"Jimmy's doctor was just a godsend," said Jim Cecchini, who is Jimmy's stepfather. "He really protected Jimmy in that hospital, and it wasn't as if he was keeping Jimmy against his will."

In fact, the Cecchinis say the hospital administration repeatedly tried in the first couple of years to discharge him, even offering the family $30,000 to take him home. But the Cecchinis and their doctor adamantly would not back down, and after a few years the hospital came to accept their longest-standing patient.

"I think Jimmy's purpose was to teach the hospital compassion," Glenna said. "I know he was the topic of many ethical discussions there."

Jimmy formed a tight bond with the sixth-floor nursing staff, and the Cecchinis say he was visibly saddened to say good-bye to them Tuesday.

"We got to know him as part of the family. He was like a son or a brother," said Shirley Paras, a nurse at the hospital who worked with him the entire five years. Paras said the longest she sees patients remain in the hospital is normally three months.

Jimmy greeted everyone with a huge smile, Paras said.

"We are going to have to get used to him not being here. Already people are saying, 'Oh my gosh, Jimmy's gone,'" Paras said, adding that "it was time for him to go home."

The road home began in earnest about 14 months ago, when the Cecchinis, feeling they were at the end of their rope, placed a call to Assemblywoman Sally Lieber, who represented Jimmy because he had in effect become a resident of Mountain View (the Cecchinis live in San Jose).

The Cecchinis, in Superior Court with the help of advocacy lawyers, had tried in vain to appeal an administrative law decision which denied Jimmy the DHS services he needed. Finally they contacted their local assembly office for assistance and were referred to Sally Lieber's office, since Jimmy had been residing in Mountain View for the past five years.

Enter Lieber, who the Cecchinis credit with doggedly pursuing the issue in the state legislature, understanding, from the beginning, that "the system had to be changed from within," Jim said.

"Sally was very receptive and a good listener. Her office stayed in communication with us and we never had to call them to keep the ball going. She really would not take 'no' for an answer," Glenna said.

"We obviously wanted to help in whatever way we could" Lieber said. "We love cracking tough cases."

Things started moving rapidly. Lieber wrote a letter to the secretary of health services explaining the situation, and arranged a meeting with the governor's top aide and officials from the department of health services.

Assembly members Joe Coto and Rebecca Cohn also stood behind Jimmy, and co-signed letters to DHS on his behalf to help resolve the issue.

Several days before Christmas in 2006, word came through to Lieber's office: The state had amended the waiver to allow patients like Jimmy Campbell to receive full coverage. Lieber's office was told by DHS that as many as 300 people in California might be eligible to receive at-home care under this waiver.

"It's inspiring because even though Jimmy is paralyzed, he impacted the lives of so many people. His struggle is heroic," Lieber said, citing the case as the most meaningful in her political career.

For the Cecchinis, Lieber's help was instrumental.

"She honestly restores your faith in government." Jim said.

Jimmy was able to come home last Tuesday, visiting with his brother, nephews and parents outside of the hospital for the first time in five years.

"He gives a thousand-watt smile every day," Glenna said. "He seems animated and happy."

The Cecchinis say it was the hard work of many people — including Jimmy's doctor, their advocacy lawyers and Lieber and her team — that brought him home.

"If anybody had given up, it wouldn't have happened for Jimmy. We needed them all," Glenna said.

"Jimmy's name is now synonymous with not giving up," Jim said.

E-mail Alexa Tondreau at atondreau@mv-voice.com

Comments

Posted by Diana, a resident of another community
on Jul 1, 2007 at 6:55 pm

So often you hear about Doctors who cater to the desires of the insurance companies, and are more concerned about cutting costs and seeing such a volume of patients that they have to look repeatedly at your chart to pretend to know your name... what a refreshing story to hear of a doctor really going out on a limb for a patient. Way to go Doc! Welcome home (finally) Jimmy!


Posted by A. Patel, a resident of Whisman Station
on Jul 3, 2007 at 1:34 pm

The doctor who fights off insurance companies, hospital administrators and all other bureaucrats. Sounds like a herculean tail of a person who fought tyrannical policy makers who only care about the bottom line.

But here's a question, how much money do we have to spend on someone who will never be a productive member of society? Over the five years, how many people who needed health care services were either turned away or delayed because there were no beds available?

In isolation, I applaud this doctor's efforts. When you factor in scarcity, the decision was dubious at best.


Posted by Another Perspective, a resident of another community
on Jul 3, 2007 at 10:23 pm

This would be a failing of the system. Not the doctor. To devalue the life of an individual simply because his body didn't work is appalling. Look at the contributions of Steven Hawking and Christopher Reeve to cite a couple of examples.

I find it hard to believe that the bed of one man would have threatened the life or well being of other potential patients. If the unit was full, the patient is diverted. It's that simple. They are not denied health care if it is needed.


Posted by H. Admin, a resident of another community
on Jul 4, 2007 at 1:52 pm

Typically I get flack for decisions like this. A. Patel definitely has a point. We've had situations where we've had to turn away patients, and yes, they do get care elsewhere, but oftentimes during the transportation period their condition worsens.

Reeve and Hawking are excellent examples of physically debilitated patients who have provided inspiration and hope to society. But what if the patient is a vegetable? There is some point we have to realize it is better for us as a society to focus our health care on others. Health care isn't free.


Posted by Another Perspective, a resident of another community
on Jul 4, 2007 at 9:42 pm

Yet this article, and this family, depicts the person in question as cognitively fully aware.

I have worked at this hospital... I'm unsure where "H. Admin" works, but most of the time this hospital is NOT full, and the acuity in question is not so high that individuals cannot be delayed or diverted.

I've even transported patients from this hospital to others. Few deteriorate of any clinical significance that weren't going to deteriorate otherwise.

The same argument could be used with regard to the elderly, you know, they're going to die anyway, no? So why continue to care for them? They aren't continuing to contribute to society...

Red herring... and a sick one to boot.


Posted by Jimmy's Dad, a resident of another community
on Jul 31, 2007 at 8:41 pm

In response to A. Patel.
What is your solution to the medically needed who, in your words, "will never be a productive member of society". What happens to the mentally retarded, the severe stroke victims, ALS victims? Jimmy was a tax paying blue collar productive worker until 30 years of age and he took pride in his work. Now that he is a man trapped in his body what is society's obligation to him? Obviously in your opinion none. He's a throw away. Was Jimmy not the catalyst for the productivity of his health care workers? I wonder what kind of fate you wish for yourself if you ever become a non-productive member of society?


Posted by eric, a resident of another community
on Aug 8, 2007 at 3:23 pm

it's great to read about another satisfied patient and his family about their time at El Camino Hospital, and the wonderful treatment they received from administrators no matter their financial circumstances.