Assisted Living: Helping Hand May Not Be Enough

By Amy Goldstein
Washington Post Staff Writer
Monday, February 19, 2001; Page A01

First of two articles

Ave Maria Jacques had lived at Courtyard Manor for three years when her youngest child, the son who visited nearly every day, got the telephone call. In the suburban Detroit assisted living facility, bedecked with fireplaces, wainscoting and gleaming chandeliers, his mother, 82, had suffocated in bed, her head and neck caught between her mattress and the siderails meant to keep her from falling out.

The police and Michigan state inspectors who arrived after her deathin 1998 discovered that the aluminum rails fastened to her twin bed hadn't fit, creating a six-inch gap. Despite its sales brochure promising "loving care, dignity and quality of life in a safe, homelike environment," despite its elegance and its $3,100-a-month price tag, Courtyard Manor had no system to make sure safety rails were properly installed, investigators concluded.

This month, the Michigan attorney general filed charges of involuntary manslaughter against the company after an inquiry into Jacques' death. It is the first time a state is known to havetaken criminal action against an assisted living facility and reflects an intensifying scrutiny of an industry that has enjoyed a pristine reputation.

Minnesota's attorney general just settled a consumer fraud case involving shabby care at a half-dozen facilities owned by Alterra Healthcare Corp., the largest assisted living chain in the country. California regulators are moving to shut down nine facilities run by Regent Assisted Living Inc. because they contend poor care caused at least one death. The Pennsylvania attorney general and a district attorney, meanwhile, are investigating whether workers at a Bucks County facility for people with dementia abused a man who died after his lung was pierced by a broken rib.

With an estimated 11,500 to 30,000 facilities housing up to 1 million people across the country, assisted living facilities represent the most popular innovation in long-term care since the advent of nursing homes more than a half-century ago. Yet unlike nursing homes, hospitals and most other forms of care in the United States, these facilities have grown up with scant government rules or oversight.

Assisted living operates entirely without federal standards. U.S. health officials inspect only those few assisted living facilities that accept Medicaid money. Even then, officials typically look in once every three to five years.

In such a climate, no one can document how often problems arise. Indeed, many assisted living facilities deliver what they advertise -- more personal service than an apartment complex and more amenities than a nursing home.

Yet public records and more than 150 interviews with residents and their families, state regulators, researchers, consumer advocates, lawyers and those who run or work in facilities across the country reveal that facilities cannot always be depended on to provide sound care. Some occasionally imperil their residents through neglect, medication mistakes, ill-trained workers or a sheer eagerness for profits.

Questions also havearisen about how long residents should stay and whether the industry's very philosophy -- which emphasizes lifestyle over health services -- offers as much help as some residents need. Some people remain in assisted living even though they need more care than a facility can provide.

Assisted living officials say they have greatly improved the lives of older Americans who no longer can remain safely at home. Karen A. Wayne, president of the Assisted Living Federation of America, the largest trade group, says the industry has reduced elderly people's dread of long-term care by creating a form that is more respectful and tailored to each resident's needs.

The vast majority of those who have moved into assisted living communities, industry officials say, live there safely. And most residents, internal industry surveys suggest, are content.

"Nursing homes are human warehouses. Here you are a person," says Roger Wallace, whose wife, Alice, 84, has advanced Parkinson's disease and moved last April into one of Alterra's "memory care" communities near Kalamazoo, Mich.

Nonetheless, it is evident that Ave Maria Jacques is not the only resident of an assisted living facility who has been harmed:

• Early one morning last August, Lucille Giroux, 79, bled to death in her rocking chair at Regent at Sunnyside Court Assisted Living Facility in Fremont, Calif. She had begun to hemorrhage from a shunt that had been implanted into her arm to allow dialysis treatments, according to state and police officials. Twice, she pressed a call button to summon help, but nobody came. By the time an aide stopped by 90 minutes later, she was dead. At first, the facility's marketing manager told Giroux's daughter her mother had committed suicide.

• Mary Bell, 80, didn't receive her blood pressure medicine for more than two months last spring at Morningside Assisted Living in Lexington, S.C. Her medication record didn't contain the proper instructions, even though she moved there because she had had two strokes, according to her daughter and state regulators. Her daughter discovered the oversight when she noticed her mother's vision failing and took her to an eye doctor, who believed Bell might have suffered another mild stroke as her blood pressure soared out of control.

• A suburban Minneapolis police department received more than four dozen "911" calls last year from residents of Alterra Clare Bridge in Eagan, Minn., who needed help the staff could not provide. When one person arrived by ambulance at a hospital, an emergency room worker called Alterra to find out about her medical history, but no one answered the telephone. The hospital was unsure how to treat her; police went to the facility and were met by a cook who barely spoke English and had not been taught how to use the phone.

In the absence of federal oversight, such incidents are beginning to draw the attention of states, which oversee the industry through a quilt of separate rules. Many states investigate specific complaints, and most issue some sort of license. But their regulations tend to be vague and to provide consumers with fewer rights than federal law ensures every nursing home patient.

States seldom dictate how many workers facilities must have or their training. Only half the states require yearly inspections, and many do not give advocates, including the nation's network of long-term care ombudsmen, an automatic right to go inside facilities. In certain parts of the country, licensed and unlicensed facilities are allowed to coexist.

Research into assisted living is starting to hint that such loose oversight may jeopardize adequate care. The U.S. General Accounting Office, in a 1999 study of assisted living in four states, found that more than one quarter of the facilities it examined had at least five quality or consumer-protection problems, ranging from poor care to inadequate staff to faulty admission and discharge practices. Similarly, the first major national survey of assisted living, commissioned by the U.S. Department of Health and Human Services, found that one of every four people who moved out said they had been dissatisfied with the care or the cost.

Owners of assisted living communities say that federal regulation would drive up costs and squeeze out the innovation that they say is the industry's hallmark. Besides, they are quick to point out, strict government rules have not guaranteed that every nursing home offers good care.

The children of Ave Maria Jacques, however, believe they were misled. "We think of these facilities as being capable of doing what they purport they can do," says her eldest son, Gary, 53, a retired real estate broker. "If they hadn't been capable of taking care of her, the family deserved to know about it."

'Mr. Carver Is Gone'

As a professor and college administrator specializing in environmental health, Franklin Carver had taught students to inspect long-term care homes. So when it was time for his own father back in North Carolina to find an assisted living facility, he thought he knew what to watch for.

When he arrived at Greystone Manor in Red Springs, N.C., he recalls, "It was just gorgeous. The wallpaper. The flowers. It looked like one of those five-star hotels."

Opened just four months earlier, Greystone Manor had plenty of staff because it was only half filled. Every door was rigged with an alarm and security lock, reassuring features because William James Carver Sr. had Alzheimer's disease and a tendency to wander.

He had been at Greystone Manor only a few months when he wandered out of the building and down a busy highway. An employee was fired, and the administrator promised it wouldn't happen again.

A month later, on the Sunday night of his 80th birthday, Carver was killed. A door alarm had been disengaged while members of a church choir arrived. As residents listened to them sing, the supervisor summoned the staff for a meeting.

"My father put his coat on, his hat, and walked out the door," his son says. By the time a fellow resident announced, "Mr. Carver is gone," he had walked a half-mile west along the dark highway and been struck by a car.

The aftermath of Carver's 1997 death was, in a sense, unusual. North Carolina fined Greystone Manor $5,000, and Carver's son and daughters won the largest legal settlement of its kind in state history, nearly $1 million. In another way, however, it reflects a pattern: Problems in assisted living are emerging as a result of families' frustrations and occasional legal challenges, not systematic scrutiny by federal or state regulators.

Often, relatives complain of less dramatic instances in which facilities simply failto do what they advertise -- or what they should. After her mother died of a heart attack at a memory-care facility that Alterra owns in Lansing, Mich., Maxine Thome discovered from medical records that no one had taken her for the electrocardiogram her doctor had ordered three weeks earlier.

Elsewhere, relatives have found that their parents or spouses receive too few showers or are left in damp "incontinence briefs."

Slip-ups involving medication appear especially common. Virtually all assisted living facilities hand out prescription drugs to residents who no longer can be depended on to remember their pills. Unlike nursing homes, however, assisted living facilities usually use aides, rather than licensed nurses, to pass out the medicine.

This method has its flaws. In a survey on assisted living, conducted last summer by the National Academy of State Health Policy, a nonprofit organization based in Maine, regulators in all but three states replied that medication problems occurred "frequently or very often."

A former employee who worked for three years at Alterra Sterling House in Ponca City, Okla., remembers occasions when residents' pills were out of stock for a few days at a time. "There was one lady that was out for 27 days straight," says the employee, who asked not to be identified.

Senior corporate officials at Alterra say they had not received any complaint about such an incident and suggested that disgruntled former employees may exaggerate problems with care. Steven Vick, the company's chief operating officer, says that pharmacies sometimes are late in delivering pills but that he would be "shocked" if a resident didn't get medicine for nearly a month.

The quality of care has become a matter of increasing importance because the residents of assisted living communities need more and more help. At first, the facilities were intended for elderly people who weren't sick enough for nursing homes, but were no longer comfortable on their own. Today, nursing home patients still are more frail, requiring help, on average, with three basic daily activities, while assisted living residents need help with only one.

Nevertheless, at an average age of 84 for women and 82 for men, assisted living residents find that their condition eventually deteriorates -- even if they were relatively healthy when they arrived. And an increasing share of facilities, advertising a specialty in dementia care, admit people with severe frailties.

The result? Half of all residents, industry figures suggest, have symptoms of mental decline. And one in four needs as much help with daily activities as the typical nursing home patient, according to the first independent, nationwide assisted living survey, conducted for HHS by Catherine Hawes, a researcher at Texas A&M University.

While some states have forbidden facilities to admit people with severe illnesses in the past, many have changed their rules lately to allow assisted living companies to accept virtually anyone who wants to come.

Several months ago, Michigan's regulatory agency ordered 10 residents to move out of Alterra Clare Bridge near Kalamazoo, contending that they were so infirm the facility was, in essence, operating a nursing home without a license. Wallace's wife, suffering from Parkinson's disease, was among them. He now is leading several families in a federal lawsuit -- apparently the first of its kind -- to block the state's order.

"If I choose to keep Alice in as pleasant an environment as I can and ensure she is properly taken care of, I should have the right to do that at my own expense," says Wallace, who pays $3,740 a month for his wife's room. He also pays $2,000 a month for the three private nurses he has hired to take turns in her room day and night. "I could do that at home," he says of the care he has assembled. "Why can't this be a surrogate home?"

The question, however, would be moot under a new Michigan law that took effect last month. It forbids the state to remove residents if their families or doctors object.

As companies and families gain such latitude, the question of whether residents should be asked to leave if they become sicker is becoming a matter of intense debate. Industry officials and some advocates for the elderly say that facilities are irresponsible if they keep residents they are not equipped to care for.

The dilemma exists because assisted living was not designed to provide medical services. Licensed practical nurses or registered nurses are becoming more common but provide care even now at about half the nation's assisted living communities, according to Hawes's findings. Certain other facilities arrange for outside nurses to visit, but one out of five has no nurses at all.

Given their reliance on unlicensed aides, many assisted living companies train workers to varying degrees. Nevertheless, consumer advocates -- and some employees themselves -- question whether staffers know enough.

"There wasn't any specific training on memory care," says Rebecca Owens, who worked for several months at Alterra Clare Bridge of Eagan, a facility outside Minneapolis for people with dementia.

Alterra officials say their training program is extensive. But when she began her job, Owens says she simply shadowed a nurse for a few days and watched "a couple videos." She ultimately was fired in a dispute with a supervisor, but the state considered her complaints credible enough that they formed part of the basis ofthe attorney general's suit.

She went through a brief class given by a company nurse, who taught the difference between oral, topical and injected medications. She practiced spreading ointment on a Teddy bear, learned how the medicine cart was arranged and found out how to mark residents' charts when they received their pills.

"But they didn't teach us about the different drugs," Owens says. "I never knew the difference between the meds."

Left to the States

Despite such evidence of problematic care, there has been little groundswell for a greater federal role. In 1999, the chairman of the Senate Special Committee on Aging, Sen. Charles E. Grassley (R-Iowa), convened the only hearing Congress has conducted into assisted living, exposing many of the industry's flaws. But Grassley does not favor federal regulation of the industry, preferring to leave that task to states.

Mindful of the prevailing sentiment, even those few politicians who favor a stronger federal hand have been treading gingerly. One of the mostassertive members of Congress on health issues, Rep. Fortney "Pete" Stark (D-Calif.), called recently for a White House conference to stimulate federal discussion of assisted living. He has not introduced legislation to regulate the industry.

For now, it is unclear whether the first wave of legal action by a few states will widen into a trend. Frustrated by the pace of state regulation, Minnesota Attorney General Mike Hatch has in his recent court settlement pioneered the use of outside monitors to oversee improvements in staff and residents' care.

Seventeen states, meanwhile, have rewritten assisted living rules in the past two years. Many of the rest are rethinking them.

Any drive for more regulation -- whether to limit the number of facilities that are built or the people they may house -- encounters strong industry opposition. The assisted living federation's state chapters have resisted bills in legislatures across the country.

A smaller North Carolina trade group filed suit last year, protesting that the state has added staffing requirements without giving facilities enough money to hire more workers.

At the national level, Wayne, the president of the assisted living federation, says the industry is eager to improve quality but prefers a new private system of voluntary accreditation that is beginning to inspect facilities and grant a seal of approval.

Some consumer advocates believe states still have not taken large enough steps. In Kentucky, new regulations exempt all facilities that already existed when the rules took effect in July.

Texas has new regulations but no financial penalties for violating them.

The uneven nature of reform is evident in Michigan, where Ave Maria Jacques died. The attorney general's office there has been among the nation's most aggressive.

On the other hand, the state's regulators and lawmakers have no plans to start inspecting -- or even counting -- an unknown number of assisted living facilities that operate entirely without a license.

Nearly two years ago, a Michigan task force on assisted living rejected the idea of stronger government oversight, recommending, instead, that the state simply require facilities to sign a clear contract with each person who moves in. Even that proposal has languished.

In mid-December, the Michigan legislature adopted a bill that tries to ensure that nursing homes use bed rails safely and only when they are truly needed. It was sponsored by a lawmaker whose constituent strangled in a nursing home. During debate on the bill, nobody mentioned that Jacques had died the same way.

Nor did anyone suggest that perhaps the new law should cover assisted living facilities, too.

Tomorrow: The costs of assisted living are high and not always obvious to consumers.

© 2001 The Washington Post Company