On Sept. 30, a warm and sunny Monday, Janet Rife stood in Room 654 at Fairfax Hospital to watch a 33-year-old doctor named Barbara Shoback examine her son, Brian.
Seventy-eight days had passed since Brian, 20, suffered a massive head injury in a car wreck. At first, he made so much progress he was called a "miracle child;" now, after a bout with meningitis, he was in a deep coma again, his mouth frozen in a pained grimace, his eyes red and glassy from an infection.
Janet stepped aside as Shoback, examining Brian for the first time, peered into his eyes. Then, Janet recalled, Shoback did something that startled her. She suddenly snapped her fingers in Brian's face.
"Nothing there," Janet remembers Shoback muttering. "There's nothing there."
Janet was furious. She thought to herself, How dare she? Janet still looked at Brian as any mother would, as a college student, an athlete, as the healthy son she had raised. Each time Brian moved his finger or blinked his eye, it rekindled her hopes that he might qualify for treatment at a special rehabilitation center.
She could not see Brian the way Shoback did. The doctor was there to check on Brian's progress, just one of her duties as a staff physician for Kaiser Permanente, the medical plan that was paying about $550 a day for the oxygen, nutrients, drugs and specialized care needed to keep Brian alive.
Shoback was trying to assess Brian's level of consciousness, using a common medical technique as a minor part of a thorough neurological examination, according to Kaiser officials, who provided an account of Shoback's examination after she declined to discuss it.
But Janet feared something else: a judgment about Brian's future, a statement that Brian's life might not be worth prolonging -- not worth either the money or the effort -- if he could not respond to something as simple as the snap of a finger.
Who makes such decisions? Janet Rife did not know.
From the moment of the accident on July 14, there were dozens of decisions about Brian Rife's life, some made instantly and without reservation, some agonized over, some put aside.
The first was the easiest for Janet, 45, and her 50-year-old husband, Curt: Save his life, no matter what. Later on, as Brian appeared to stagnate, the decisions became much harder. How much did Brian have to improve to be considered a candidate for rehabilitation? Was the movement of a finger or the blink of an eye enough? And if he did not get better, would he end up spending the rest of his life in a nursing home?
In any case, how would the Rifes pay the cost?
Shoback finished her examination of Brian. Janet watched, still seething inside. Moments later, in a nearby conference room, Janet and the doctor talked about Brian's case for the first time. When Shoback expressed sympathy about Brian's condition, Janet released some of the pain that had been building for months inside her.
"I told her that doctors seem to be saving more and more of these lives," Janet said as she recalled the lengthy talk. "I said, 'Great, he's breathing,' and 'Great, his heart's beating.' But now what are we supposed to do?"
Janet remembers Shoback shaking her head while they talked about the growing number of people consigned to lives of total dependency -- people who probably would not have survived without recent medical advances. "She said it was a ridiculous waste of resources," Janet recalled.
Then, with a swiftness that stunned Janet, Shoback mentioned Brian again. She posed the ultimate question: If Brian came down with another serious infection, causing further brain damage, would Janet and Curt allow the doctors to "withhold treatment?"
Janet said she felt numb for hours after. Deep down a small part of her was grateful that the issue was finally out into the open. In fact, she had asked herself this question many times since July 14. But no one from Kaiser had ever raised the issue before.
Janet had always known there had to be limits -- to Brian's recovery, to Kaiser's coverage, to Kaiser's ability to pay for Brian's future needs. At the same time, she found it hard to accept those limits, and even harder to accept that money would play a significant role in determining her son's future. The Spirit of Rehabilitation
The medical bills arrived in a trickle at first, and soon a deluge at the Rifes' house on Dabney Avenue in Springfield. The envelopes bore postmarks from Easton, Salisbury and Baltimore, and contained charges for line items as arcane as "blood gas analysis" and "suction canisters."
Among the smallest was $36 for an electrocardiogram; the largest, $19,372 for drugs. At the shock-trauma center in Baltimore alone, where Brian was a patient for 73 days, the bill came to $121,677.
The Rifes never worried about the bills. They had the kind of trust in medical insurance that came along with good jobs and good benefits, the cornerstones of the American middle class. As a $50,000-a-year employe of the Army, Curt was entitled to choose from 25 medical plans available locally; two years ago, he signed up with Kaiser.
Every two weeks the Army deducts $48.20 from Curt's paycheck; the Rifes never struggle with deductibles, copayments, bills or forms. Several times a year, Curt, Janet and their other four children go to the Kaiser clinic near their home for routine checkups.
Kaiser is more than an insurance company; it is a national health care organization with its own doctors, clinics and -- in California -- its own hospitals. The Rifes have always respected the health maintenance organization approach to health care, especially its stress on preventive medicine and its interest in catching problems early enough to avoid expensive hospitalization or treatment later on.
The Rifes had no reason to believe they would find themselves in a circumstance where they were not covered. Then, one day in early August, Janet called Pat Davis, a Kaiser administrator and nurse who handled the Rife case.
Janet asked her: If Brian began to emerge from the coma and qualified for a rehabilitation center, what portion of the costs -- estimated at $18,000 a month -- would the company pay?
Davis' answer was simple: None.
"I got involved with this case from Day One," Davis said several months after the accident. "The Rifes told me from the beginning what they wanted and were hoping to do. But you're just not going to find any insurance company that's going to give you 100 percent of 100 percent.
"As a registered nurse, I certainly saw the needs for their son, but I had to present reality. It was my job. Was it difficult? It's always difficult to say, 'Look, I'm sorry. But there are certain limitations.' "
The Rifes were incensed. They said they did not realize that the standard medical plan does not cover long-term rehabilitation costs. To them, rehabilitation was not simply a word or medical concept. It conveyed a spirit. It symbolized a step forward, a sense that Brian could get better.
A rehabilitation center, with its staff of speech and physical therapists, could devote nearly 24 hours a day to Brian. Perhaps the therapists could bring him out of the coma enough to teach him to speak again, walk again, think again. There was one such center nearby at Mount Vernon Hospital, just 25 minutes from the Rifes' home.
Curt called the U.S. Office of Personnel Management, which administers the health insurance plans for federal employes. His request: a clearer contractual definition of "rehabilitation." The answer: no government definition existed; Kaiser's 23-page brochure doubled as his policy. It contained everything the Rifes were entitled to -- no more or less.
Curt went back to the brochure once more to make sure, running his finger down a list of items on page 9 under the heading "What is Not Covered." The list included "hearing aids," "experimental transplants," "plastic surgery." Then, at the very end of the list, "the services of a rehabilitation center."
Then Curt spotted something else on the next page that made him even angrier. Kaiser would cover 100 days a year if Brian ended up in a nursing home.
To the Rifes, it all seemed absurd: If Brian continued to stagnate, Kaiser would pay some of the cost of caring for him; if he improved, Kaiser would not finance the highly skilled, lengthy therapy that was necessary to sustain his recovery.
As far as the money was concerned, the Rifes had a fallback. They had applied on Brian's behalf for Virginia Medicaid benefits. Brian qualified because he was over 18 and had no income. Medicaid would cover long-term rehabilitation costs -- but only at certain approved hospitals, the closest of which was in Richmond, 106 miles away.
For the first time, the Rifes felt vulnerable. But they were the kind of people who not only appreciated the benefits of the middle class; they also knew how to pressure the system when they felt victimized.
Janet pressed her case. She sent a written appeal to Kaiser officials and to various government representatives. She met with an attorney at the law firm where she worked as a secretary, exploring the possibility of suing Kaiser. She and Curt joined an organization called the National Head Injury Foundation, founded six years ago to bring together families in similar straits. She telephoned The Washington Post, hoping to persuade a reporter to write an article that would generate enough publicity to force Kaiser officials to change their minds.
Meanwhile, Janet sought the help of an expert neurosurgeon, Dr. Ayub K. Ommaya, believing that he might see something in Brian's condition that Kaiser's doctors had not. $/ A Second Opinion
On Tuesday evening, Oct. 8, Ommaya met Janet in Brian's room to begin his examination. Brian was draped in a blue and white gown, his slender legs wrapped in white cotton stockings to prevent bedsores. His temples were darkly sunken, his cheeks covered with whiskers, his forearms riddled with brown needle marks.
Ommaya, a pudgy, rosy-faced native of Pakistan, came highly recommended, and Kaiser had agreed that his expertise might prove useful. He took a moment to look at Brian's chart, then held Brian's head in his hands. Swinging it gently from side to side, he looked vainly for movement in Brian's eyes. Finally, he took a rubber syringe, dipped it in a glass of ice water and squirted the liquid forcefully into Brian's ears, watching closely.
Brian hardly reacted.
"When I did the ice water test I got no response at all from the left side and a minimal response on the right, which means that the brain stem is almost totally wiped out," Ommaya told Janet a little later, offering his opinion of Brian's chances for recovery.
"If these brain stem responses don't come back, then the chances are not very good, I'm afraid," he said during the conversation, which Janet taped. "The brain stem has to wake up. The lower part is working, the part that controls the blood pressure, the heart rate. But the upper part, which is critical, that's not working."
Janet was quiet a moment. "We just feel the Kaiser doctors are giving up on him too soon," she said softly. "We've seen him fight for his life and make it through each of these crises."
Ommaya replied, "I think we need some more data. It's a very major decision you have to make. It's very important for you to feel you've done everything possible."
Two days later, in the same conference room, Janet and Curt and three Kaiser representatives, Pat Davis, Dr. Robert Ryan and Dr. William McAveney, met to discuss Brian's condition and his future. It was 88 days since the accident, the 15th day of Brian's stay in Room 654.
Janet and Curt were scared. They saw the meeting as a confrontation. As Janet wrote in her diary for that day: We had to convince the good doctors that Brian does indeed have some responsiveness. They had not been seeing anything.
The Rifes argued that there were several reasons for being more patient. Curt said he reminded the Kaiser officials that Brian sporadically responded to pain. Janet told them of Ommaya's statement that more time and data was necessary.
But Ryan responded at one point, "I see Brian as comatose, period," according to Curt.
Later, Curt said, McAveney touched on the same ethical question that Shoback had raised 10 days earlier: If Brian were to contract another infection, would the Rifes consider not returning him to a respirator?
"It was tough. We just didn't have an answer," Curt said.
By the end of the conference an uneasy agreement was reached: Kaiser would pay for Brian to stay at Fairfax for four more weeks while speech and physical therapists worked with him, trying to shake him from the coma. Kaiser was still making no promise of paying for long-term rehabilitation once Brian left Fairfax.
The next day, Janet sat at her typewriter in a second-floor den and drafted an angry appeal of Kaiser's policy toward rehabilitation.
"We have been through an extraordinary ordeal during the last three months," the letter began. " . . . On many occasions during this difficult period, we have felt that Kaiser's policies have added to our anxiety and grief . . . Brian's case has been very complex, but as we've spoken to other parents of the head-injured, we find it is not atypical."
Calling Kaiser's policy "cruel," she concluded: "We would like to believe that the people who started Kaiser Permanente were idealists who wanted to serve people. Leaving your subscribers struggling in such an impossible situation can hardly be consistent with such an ideal." The Kaiser Viewpoint
To Kaiser Permanente medical director Dr. Wayne W. Alberts and Alan Silverstone, the company's regional manager, the Rife case represented much larger medical and social questions that seemed to have no easy solutions.
During a lengthy interview with The Post at the company's administrative offices on Chain Bridge Road in Vienna, Alberts, a dark-haired, bespectacled man, described it this way: "Head injury is an area of increasing concern to us because the technology of allowing individuals to survive has far outpaced our technology to rehabilitate people.
"We have to remember it may never catch up. Never. We may never catch up in rehabilitation with our ability to save human life," he said. "Remember, what we can now do to make someone's lungs, heart and air ways function throughout these enormous traumas is very different from what we can do to regenerate brain tissue."
Alberts and Silverstone, a lanky, silver-haired man, declined to discuss the Rife case, citing patient confidentiality, but they agreed to talk about catastrophic cases in general.
Silverstone said, "There are people we keep alive now who in the old days we weren't able to. Some people -- and I wouldn't say this -- some people might say it's unfortunate some of these people are able to live because of the quality of their life."
Every year, Silverstone said, Kaiser tries to predict how many "big-ticket bills" -- those over $100,000 -- might occur. In the Washington area, where Kaiser has 150,000 members, that might include 20 premature babies and 10 to 12 neurological injuries that require extensive rehabilitation.
"We are willing to absorb our fair share of cases like this in the community," he said. "But we can't price our product unreasonably high or else no one will select us as a health insurance carrier. What we really do is keep our finger on the pulse of the community and listen to what members have to say and to what employers have to say.
"Generally," he said, "what we've been hearing is keep our costs lower -- reduce benefits, reduce premiums."
Alberts suggested that the simplest way of covering gaps in insurance policies was for individuals to purchase major medical policies -- which cover catastrophic cases -- in addition to the standard coverage. "The problem is we can't get people to spend an extra 8 or 10 bucks to take this coverage. Then, the catastrophe hits, and they say, 'Why didn't I do it?' "
(Major medical policies, though, can be hard to obtain, according to officials at several insurance companies contacted last week. Kaiser and most HMOs do not offer them. Federal employes can get a major medical option by paying more money, and it can be a considerable expense depending on the amount of coverage desired. Employes of private companies often belong to group plans; if they want more coverage, they can go outside the plan and buy a separate policy -- but many insurance companies will not sell major medical coverage without selling the basic coverage as well.)
"Ultimately," Alberts said, "what we have is a society problem and that is the notion that someone else is responsible. Somewhere along the line . . . we have to take responsibility for our own acts." 'Night Terrors'
On a drizzly night in mid-October, several days after Kaiser agreed to pay for four more weeks at Fairfax Hospital, Curt marched into Brian's room, his look stern and defiant.
"Hey guy, it's Dad. Don't be a bum, now. You gotta work on this," he beseeched, pinching and poking at Brian's chest and forearms through a network of plastic tubes. Brian's left arm rose several inches, probably a reflexive reaction.
Each visit became a work session. Janet was usually the gentler of the two, stroking his forehead and holding his hand. "C'mon Bry. Gimme a kiss, will ya?" she asked one night, sighing as she brushed his lips with her cheek.
Even Brian's friends and neighbors were drawn into the effort. On the wall near the foot of the bed, the Rifes hung a large sign printed with a black felt-tip pen. It read:
Speak to Brian in a clear, positive voice. Tell him who you are.
Please don't give up too easily. Ice water and a washcloth are available at the nurse's desk.
Speak clearly about what you are doing:
"Brian, I'm wiping your forehead with a cold cloth."
"Brian, I'm going to move your arm to exercise it a bit."
We are trying to provide as much stimulation as possible.
But nothing seemed to work. In a tiny yellow notebook that Janet provided, Brian's friends and neighbors described their observations.
Oct. 23, 3 p.m. -- Frank Beto and I visited Brian. I could not rouse him very much. We talked and patted his left hand. Applied some ice to his neck with little reaction. We talked some more and left him with Bruce Springsteen playing . Love, Pete H.
Friday, Oct. 25 -- Brian seems very tired today. No great responses. -- Jack.
It was all so frustrating. Brian simply was not getting any better. Janet worried constantly that Brian would get an infection and they would have to confront the issue of withholding treatment. She wrote in her diary:
Night terrors: Court cases for the right to give someone an injection to allow them to die. Turning off the feeding tubes, allowing starvation. How can one do such a thing?
Allowing Brian to die through "judicious neglect." Could you argue for the morality of that over the morality of a deliberate act? How do you measure quality of life?
Janet, no matter how hard she tried, could not erase the image from her mind of what Brian was like before the accident. "I mean, all those years, you know, just about ready to launch him in life and by damn, we're back to square one," she said one night at the kitchen table, her cheeks trembling with emotion. "That's what really makes me mad."
She began to have strange dreams. She recorded them in her diary:
I am in the hallway at the hospital. Brian's bed is there. Somehow he is out of it and standing against the wall. I notice this and shout, "he can't stand alone -- help me get him back in bed."
Then it seems we are in a different place where we are moving him from one bed to another. In the process, his head is bumped and he cries like a baby -- a loud 'waaa' and his face is like a tiny infant.
I embrace him and he hugs me back. It is a good, strong hug like that of the "real" Brian. I tell him how good that feels and he laughs.
It is again the laugh of a baby. Encouraging Signs
In the last week in October, Brian's therapists began to see subtle changes. Even visitors noticed them: an almost imperceptible movement of his lips, the tracking motion his right eye made as people came into the room.
On Oct. 29, therapist Deborah Gale wrote the Rifes a note:
"Brian is truly lightening up. Both eyes open. More easily aroused. Awake longer. Tracking movements. Smiles, left side only, repeatedly. Using amplifier and pain stimulation. Brian raised his right hand a little three times with repeated stimulation . . . . "
Janet was almost afraid to be hopeful. There had been so many setbacks before.
The next morning, Brian had an important visitor -- Dr. Roger Gisolfi, the head of the rehabilitation unit at Mount Vernon Hospital. Kaiser had asked Gisolfi for help in determining Brian's chances for recovery. That was fine with the Rifes, who wanted to get Brian into Gisolfi's program, which was the closest to their house.
Gisolfi did not have much time. Janet bent over Brian, imploring him to show Gisolfi what he was sporadically showing others. Brian's best friend, a stocky fellow named Jack Winstead, helped out, slapping Brian's arms repeatedly and beseeching, "C'mon, Brian!"
Brian remained still.
Silence fell on the room. Janet sighed. She turned to Gisolfi and began to insist that Brian really was improving. Gisolfi, a balding, wiry man, stopped her in midsentence.
"I've seen the notes," he said, referring to observations made by Gale and other therapists who had been working daily with Brian.
Then he told Janet the most encouraging news she had heard in weeks: He would tell Kaiser officials that Brian was showing the first signs of emerging from the coma and that he would accept him as a patient at Mount Vernon. Now the question was: Would Kaiser pay any part of the cost?NEXT: A long winter's journey