From a Nursing Home Bed, One Patient Sues for the Right to Die

People, Feb. 19, 1990
Assignment: Describing his life as intolerable, quadriplegic Larry McAfee sued the state of Georgia for the right to kill himself. In doing so, he drew national attention to the government's ill treatment of patients receiving long-term care.

Larry James McAfee's new life, the desperate one, began on May 5, 1985, on a road winding through the mountains of north Georgia. The electrical engineer had passed the afternoon picnicking with friends at Vogel State Park. Around 4 p.m., they climbed on their motorcycles and headed home.

Cruising out of the mountains, McAfee decided his friends were taking the curves a bit too fast. He eased his motorcycle onto the shoulder of the road, but somehow his foot caught on the gravel. The bike lost traction and went down. McAfee's head whiplashed forward and back, snapping his neck where his helmet ended.

A nurse happened to be traveling with the bikers. She ran to McAfee and began CPR; then, as now, he was unable to breathe on his own. Other motorcyclists called paramedics, who rushed McAfee to a hospital in nearby Blairsville. In a few hours, he was stabilized, then airlifted to Georgia Baptist Hospital in Atlanta. He was paralyzed from the neck down.

Thus began a nightmare that has seen McAfee victimized not once but twice -- on that sunny afternoon by chance and poor judgment, and every day since then by the nation's haphazard health-care system. "It would have been easier to lose Larry that day than to go through what all we've gone through," says his mother, Amelia McAfee, 54. "I don't know why the doctors save them when there's nowhere for them to go."

After he was shunted like unclaimed baggage to a series of medical facilities, Larry McAfee found a place to go: Fulton County Superior Court. Last August, McAfee sued the state of Georgia for permission to shut off the ventilator that has breathed for him for the last four years. He said life as a quadriplegic on public assistance was not worth living. On Sept. 6, Judge Edward H. Johnson granted McAfee's request, but then ordered his own ruling appealed to the state Supreme Court. Two months later that court, in its first right-to-die case, decided that if McAfee shut off his ventilator, his subsequent death could properly be attributed to injuries sustained in the 1985 accident and would not be suicide. Those assisting McAfee, said the justices, would not be liable to prosecution.

The decision has made McAfee a desperate symbol of all that's wrong with the way we care for the physically disabled. Says Dr. Russ Fine, director of the Injury Prevention Research Center at the University of Alabama, Birmingham: "I've seen this time and time again, and it's come to a head with Larry McAfee. Other people have been pawns manipulated by a system that is supposed to work and doesn't. Larry said he'd rather die."

But that may no longer be what McAfee wants. Against all expectations, he's still alive in an Alabama nursing home. There the man who sued for the right to die is beginning to find reasons to live.

McAfee's descent into despair was not immediate. He remained at Georgia Baptist Hospital four days after his accident, then was transferred to the prestigious Shepherd Spinal Center. There he attained the dubious distinction of being the longest-ever resident, staying for one year. Very few who suffer his sort of injury survive.

McAfee did...and flourished, after a fashion. In April 1986, McAfee moved into an apartment on Atlanta's north side. His Blue Cross/Blue Shield policy, which had been in effect from the beginning, paid for round-the-clock nursing and most everything else. His parents -- Amelia, a clerk in a machine shop; and James, who works in a kaolin mine -- supplemented the insurance money and a Social Security disability check (about $700 a month) with their $20,000 savings. The bills were enormous -- nursing alone cost about $7,000 a month. Nonetheless, the McAfees managed to buy a burgundy Dodge van and have it customized with a lift and locks for Larry's wheelchair. For a brief, wonderful time, he rode to the grocery store, the occasional movie or basketball game. Larry McAfee seemed to be rejoining society.

But the insurance policy had a million-dollar ceiling, and McAfee ran out of money 16 months later. The tenuous fabric of his life quickly unraveled. Unable to pay the bills, McAfee was forced to apply for coverage under Medicare, a federal program providing assistance primarily to the elderly and those suffering catastrophic illness or disability. (Medicaid, on the other hand, is a state-administered program that reimburses health-care providers for tending to impoverished citizens.)

In the name of cost-effectiveness, most government assistance programs require the institutionalization of patients; relatively few are compensated for care at home. McAfee, like thousands of disabled individuals before him, found that he'd have to enter a nursing home. Unfortunately, few nursing homes are willing to accept a patient in McAfee's condition, because the nature of his injuries makes caring for him an expensive proposition.

In November 1987, as the insurance money trickled to a halt, officials at Shepherd finally found an institution outside Cleveland, Ohio, that would accept McAfee. But what was supposed to be temporary stay stretched to 14 months, and McAfee hated every minute of it. He seldom saw friends or family. He felt neglected and ignored by the staff, and went so far as to file complaints with Ohio state health officials. The home, Aristocrat Berea Skilled Nursing Facility, maintained that McAfee was difficult and abusive. Early one Monday morning in January 1989, McAfee was loaded onto a plane and sent back to Atlanta. Administrators at Grady Memorial, the city's huge public hospital, weren't told McAfee was on the way until the plane had taken off.

The incident outrages Fine. "All right, so Larry can be difficult and demanding," he says. "He is catastrophically injured. He has no control over his bodily functions and what happens to him."

Says Amelia McAfee: "The nursing home said he was verbally abusive, and Larry will sometimes rant and rave if he gets mad. But it's his only outlet."

Fine believes that nursing homes too often dominate the patients they are supposed to serve. "The patient is not an interruption to our work -- the patient **is** our work," he says angrily. "The patient is always right, even when he's wrong. If a health-care professional can't embrace that axiom, he needs to get the hell out of the profession."

When McAfee arrived at Grady, doctors placed him in the intensive-care unit and started looking for another nursing home. Over the next eight months, the hospital itself fell victim to bureaucratic regulations, losing nearly $170,000 because Medicare will not pay for a patient who doesn't need to be in a hospital, even if he doesn't have anywhere else to go.

It was at Grady that Larry McAfee decided he'd rather die than continue without control over his life.

"Try to imagine what it's like," he says. "Imagine still being active mentally and -- as depressing as nursing homes and hospitals are for short visits -- imagine being locked away in one seven days a week, 24 hours a day, with little or no control over the schedule or routine. All the other people you meet are either not able to communicate or not able to interact with you, and your family is hundreds of miles away. Even your simplest requests are ignored or considered too demanding. I get so frustrated and depressed sometimes."

In August 1989, a few days after he sued to die, McAfee was transferred to the Briarcliff nursing home in Alabaster, Ala. By December, the legal wrangling was over, the reporters had gone home, and nothing stood between McAfee and suicide. Except Brenda Carson.

An energetic, religious woman, Carson, 51, is director of United Cerebral Palsy's supportive-employment project in Birmingham. She trains the untrainable -- her clients are people so physically disabled that they are "closed files," citizens whom the state of Alabama expects will never work. But under the auspices of an experimental program being tested in seven cities, Carson has proven the bureaucrats wrong again and again. She's trained and found jobs for ten severely disabled individuals in the Birmingham area; four of them have left UCP's half-way house for apartments of their own. They earn good salaries, most in data-entry jobs, and they pay taxes. No more nursing homes.

"Nobody really knows what these people can do," says Carson. "Nobody gives them the chance."

Carson was contacted in December by Dr. Fine, the rehabilitation expert, who had introduced himself to McAfee after reading newspaper accounts of his trial. In December, Carson and Gary Edwards, UCP's executive director in Birmingham, went to Briarcliff and made their pitch: postpone your suicide, and let Carson try to train you for a job and a return to the workplace. She's done it with others, Edwards said; she can do it for you.

"We left and sat by the phone, waiting to see if he had the desire to do it," says Carson. "He called -- twice."

Since then, Carson has spent six mornings a week at McAfee's side in the nursing home. Through the University of California, Los Angeles, she obtained a voice-activated computer and software that eventually may enable McAfee to perform the engineering job he once had. Huddled in front of the color monitor like two kids watching reruns, they have been working feverishly to enter the voice commands necessary for the computer to operate the design software. Normally McAfee must repeat 150 words five times each, until the computer catches the nuances of his voice. Often, he is parched and tired when the morning is over.

Carson stands to one side, holding the manual in one hand and occasionally punching the keyboard with the other. If all goes well, McAfee soon will be operating the computer by voice alone.

"Larry still has the option of ending his life, if he feels it becomes unbearable," says Carson. "But now he has another option....I absolutely believe he will go back to work. Before the accident, he was an engineer with a lot of responsibility. When I read his file, I thought he was very employable. It wasn't until we started working together that I realized just how bright he really is."

They are three weeks ahead of schedule, so after the last commands were entered, McAfee urged Carson to take a much needed vacation in Florida while he read the manual for the design software. When she returns, Carson, a devotee of Norman Vincent Peale, will begin writing letters to engineering firms who might be interested in having a man of McAfee's talents on staff.

The past two months haven't been easy. McAfee once was a heavy-set man who stood 6'6" in his socks and weighed over 190 lbs, an outdoorsman who loved motorcycles, golf, hunting, and basketball. He played freshman football at Georgia Tech -- in fact, still dons his favorite Georgia Tech cap for pictures.

Today, McAfee can eat and speak, but he can do little else. The only part of his body he can move is his head. The ventilator wheezes quietly on the table next to his bed, forcing air through a long, blue tube into his trachea. He must be turned at least every four hours or risk developing bed sores. He is fed, bathed, and changed on a regimented schedule. He is absolutely helpless.

"It was hard for him at first," says Carson. "You have no control over you life in a nursing home. There's always a feeling of hopelessness. But Larry is a unique, caring person, and I think we can do it....Since he's been working on the computer, he's been forgetting a little about himself. Three weeks ago, I saw him laugh for the first time. It was a stupid joke I told him." Carson used to wake up at night, worried that McAfee had finally given into despair and pulled the plug. Now she sleeps soundly.

Daunting though his physical disabilities are, they don't bother McAfee nearly as much as the consequent loss of independence, of volition. Case in point: every morning, McAfee is awakened at 7:00 and "suctioned," a procedure that entails inserting an instrument through his trachea into his lungs so as to remove secretions that accrue during the night. It's uncomfortable, and McAfee has objected -- to no avail -- to the staff's doing it so early in the morning. If McAfee is given time to wake up on his own, he can often loosen up the mucus and make suctioning easier. If not, the process often leaves his voice hoarse, and Carson says that has made it difficult for the computer to recognize his commands.

"There's a routine in nursing homes," says McAfee, "and if you deviate from the routine, you're considered uncooperative. They provide basic care, that's it. Even if you ask them to pick up something at the grocery store, they say you're only allowed to get three items a week. They won't even order out for you. And I don't have dietary restrictions -- eating is one of the few enjoyments I have left."

Initially, Briarcliff even refused to allow Carson to bring in the computer; officials said they didn't want to be "responsible" for it. As he has in the past, Dr. Fine changed their minds.

Not long after they met, Carson stood by one morning while the nurses suctioned McAfee. After they left, she turned to him and said: "I want you to know that I know what it feels like to be helpless." When she was a nine-year-old girl living in Canada, she told McAfee, she was stricken with bulbar polio, which primarily affects the larynx and upper respiratory tract. Doctors said she'd probably die; if she lived, she'd never talk again. Carson spent two months in an iron lung, and she was suctioned every day. It doesn't really compare with your experience, Carson said, but I remember it like it was yesterday.

"I've never told any client that," says Carson. "I don't know why I told him, except that he looked so depressed."

He had every reason. When McAfee first arrived at Briarcliff -- an older, one-story brick building about twenty minutes south of Birmingham -- he spent time riding up and down the halls in his power wheelchair, which is operated by a puff-and-sip stick near his mouth. To his dismay, McAfee discovered that most of his companions were elderly, ill, and uncommunicative. He decided he'd be better off in his room listening to the radio. "They come in here and take my blood pressure and temperature," gripes McAfee. "I'm the youngest person here, and **I'm** not sick. Most patients in nursing homes are just marking time. It's not an exciting place to be."

Carson has given him the cautious hope that life could be something more than marking time. "All I'd like to do," McAfee says, "is work again. I've got eight years experience in a job that I enjoyed. I was good at it. I want to able to make money again." He looks around and laughs. "I'd even like to pay taxes again."

There are still enormous obstacles to overcome, most of them bureaucratic. Carson's plan for McAfee's new life hinges on the Health Care Financing Administration in Washington, which must waive some Medicaid requirements in order for McAfee to receive government assistance at home. Currently Medicare pays for his stay at Briarcliff, to the tune of $650 a day. But because the Medicare Catastrophic Coverage Act of 1988 was repealed last year, Medicare is back to the old formula -- meaning it will only pay for 100 days of care per year (minus various deductibles).

That means that McAfee's Medicare coverage will run out on April 10, and he will have to apply for Medicaid, the state-administered program for the poor that pays considerably less. But Briarcliff doesn't accept Medicaid patients, and McAfee still is a Georgia resident. Together, those things mean he'd have to transfer to a Georgia nursing home, assuming one could be found to handle a ventilator patient.

But McAfee flatly refuses to go to yet another nursing home, in Georgia or anywhere else. "He's told us that if he has to be moved again, that's it," says UCP's Edwards, who has been spearheading the drive for a waiver. "Medicare and Medicaid really only pay for nursing homes and hospitals, not if a person wants to live independently -- although the cost is often much less. We're trying change the bias that keeps people in nursing homes. It's just stupid." And, he notes, "in places like Alabama and Georgia, Medicaid pays pathetically."

Officials in Georgia are hardly welcoming him back. Aaron J. Johnson, state Commissioner of Medical Assistance, won't even concede that McAfee is a resident. "He's not behaving as if he has Georgia residence," he says. "Last I read in the newspaper, he was living in Alabama and intended to stay there."

While Georgia Medicaid does make some provision for care at home, Johnson says the program seldom reimburses quadriplegics like McAfee who want to live on their own, because they are deemed in need of "skilled" nursing, which is provided most cost-efficiently in nursing homes.

"Medically, it's least costly to care for any patient in an institution than in a private home setting," asserts Johnson. "We must not use our resources in ways that are extravagant."

Independent living, says Johnson, is just an expensive idea. "We're not authorized to spend more money on one patient just to get them in the community," he says. "Our mandate is to provide the least costly, medically necessary service."

Although Johnson's opinion is widely shared among bureaucrats -- a recent UCP survey found that 70 percent of Medicaid funds go to nursing homes -- many advocates for the disabled say the mindset is anachronistic. New technology, for instance, permits even the severely disabled to answer phones, drive vehicles, and cook food. Infrared lights and voice-activated equipment enable even quadriplegics to operate computers and thus hold jobs. There's little reason for the disabled to waste away in nursing homes when they could be out in the community, living and working.

In Denver, for instance, 100 disabled members of the non-profit Atlantis Community live in apartments all over town. The staff schedules visits by nurses and attendants, depending on individual need, and is reimbursed by Colorado Medicaid about $700,000 per year. One member is a C-1 quadriplegic, like McAfee, who has been living on his own since 1975.

There are at least four other such "independent-living" organizations in Denver alone. In other states, such as California, Medicaid regularly reimburses small group homes of disabled individuals.

Wade Blank, executive director of Atlantis, is a former nursing home employee and the nation's most militant advocate for the disabled. "Our experience is that it's much cheaper to have them out of the nursing homes -- paying rent in the private sector, riding public transit, getting jobs," he says. "It's exactly what the conservatives have been calling for years."

Says Dr. Fine: "The system operates with a disinclination to rehabilitation. They'll pay for an expensive hospital, but not for independent community living at a fraction of the cost....Over the years, I've seen too many of these people just warehoused and forgotten."

"Many disabled people could possibly be cared for at home," says Dr. Arthur Caplan, director of the Center for Biomedical Ethics at the University of Minnesota, "but they're left to languish in nursing homes. Money is a bigger obstacle to care for the disabled than technology. Often the technology is quite good, but there's no way to pay for it."

Residents of states in which Medicaid pays poorly, says Caplan, often suffer disproportionately. "Too many disabled people are subject to the luck of the draw with respect to geography," he says. "Some states pay well, like Minnesota, but others offer relatively few programs -- like Georgia." Caplan suggests that Medicaid payments be federalized, not left to capricious state legislatures.

"The way Georgia has treated him, I don't want him here," says Amelia McAfee. "I'd rather he stay in Birmingham. There are people who care there and have worked hard for him."

Those who are closest to McAfee -- his parents, Dr. Fine, Carson -- unanimously support his right to shut off the ventilator with a timing device he dreamed up while staring at the four walls in Grady Hospital. McAfee already has asked Dr. Fine if we would assist; he has agreed. April 10 is not far away.

"It's very hard," Amelia McAfee says quietly. "Family is selfish, and you want to keep Larry in any condition. But when you think about what he goes through, you've got to let him make that decision."

She remembers getting the call that afternoon in May 1985. She and her husband James had just returned from a round of golf -- the whole family, after all, is athletic. Amelia was grilling hamburger on the stove when the phone rang. A man identifying himself as a doctor at the Blairsville hospital asked if he had the McAfee residence. Amelia said she was Mrs. McAfee. The doctor asked to speak to James. Amelia handed him the phone and said, "It's about Larry."

On the way from her home in Sandersville to the hospital in Atlanta, Amelia thought about her son. Larry was no stranger to accidents. When he was 13, he locked the brakes on his ten-speed bike, pitched headfirst to the pavement, and broke his right arm. The McAfees knew they'd have to spell out everything the energetic, independent Larry couldn't do while the cast was on -- they told him no basketball, football, biking, rough-housing. They forgot to prohibit soccor. And two weeks later Larry broke his toe trying to play soccor.

"Larry loved anything outdoors," says his mother, "and he was big on lifting weights, eating right, staying in shape."

She thought about Larry's senior year in high school. He had managed to save enough from his job at the Coca-Cola bottling plant to buy a little yellow Karmann Ghia. One snowy day, he and his sister Julie were sitting on the shoulder of the road, waiting for the school bus to empty, when a man whipped around the bus and hit Larry's car on the driver's side. Fortunately, the Karmann Ghia gave way in the snow and slid into a ditch. Although the car was totaled, Julie was unhurt and Larry suffered only a cut on his left shoulder.

At Georgia Baptist in Atlanta, Amelia McAfee knew it wasn't going to be so easy this time. She and James were being escorted to a waiting room when she caught sight of a patient being wheeled down the other end of a long corridor. She recognized Larry and ran down the hall to see him.

His feet, she noticed distractedly, were hanging over the edge of the gurney by a good six inches. They didn't have a stretcher big enough for him.

One Man's Right to Die