Federal Law Doesn’t End Nursing Home Dilemmas : Care: Some say tenderness and love is what’s needed. One Alhambra facility appears to have the solution.

The curtains were hanging in shreds, and pools of urine had rotted out sections of the floor. The patients were suffering from oozing bedsores. In a fit of madness, one of them had attacked an aide with large hedge-trimming shears he kept under his mattress.

“The place was a pit. It was a total nightmare,” recalled Sheryl Brykman.

That was 10 years ago, just before Brykman and her partner bought the 43-bed nursing home in Alhambra. Since then, they have turned it around.

There is still plenty of misery in this facility. But health care officials say that the Brykirk Extended Care Hospital is a good nursing home.

“It’s one of the few that are good. Compare them with some of the rest of the garbage cans we have and they’re well above average,” said an official in the Los Angeles Long-Term Care Ombudsman’s Office, which monitors 500 facilities in the west San Gabriel Valley.

There have been no complaints filed against Brykirk in six years, and inspection reports of the facility paint a generally “positive” picture, according to county health officials.

The public spotlight has focused attention recently on the quality of care in California’s nursing homes. Despite what is generally regarded as stricter standards for nursing homes in California than in many other states, a state watchdog commission last month documented “a repeated and continuous pattern of poor care and outright neglect” in the state’s nursing homes.

A new federal law that all states except California implemented in October aims to improve nursing home conditions by giving patients a stronger voice in their care, requiring facilities to document treatment and specifying how surveyors should inspect nursing homes to see whether the new standards are being met.

After resisting the reforms for months, California officials are now moving to implement them.

At the center of the controversy are fundamental questions:

What makes a good nursing home and will the new law accomplish this? To what extent can a law of any kind ease the pain of being old and alone in a nursing home?

The landmark federal reforms are the culmination of years of work and broad consensus reached among industry, government and consumer groups to improve care in 100,000 nursing home patients across the nation.

Now that the law is finally being transferred from the books into real life, it is clear that some patients will benefit greatly, but that the lives of many others will not be touched. Consumer groups say that, in the end, the most important factor for any patient is something that is hard to legislate: tender, loving, hands-on care.

A tour through Brykirk Extended Care Hospital reveals the deep-rooted complexities and problems of nursing home life that confound even the best administrators and are not addressed by the new law. The names of some patients have been changed for this story.

No Relatives

Elaine, 85, is bedridden, blind, and unable to swallow. In addition to a bad heart, she has no sensation in her hands or feet and no control of her body functions. She is diapered and tube-fed. Merciless spasms have crumpled her body into the fetal position and sent her head jerking fitfully back and forth. On her face is the look of anguish.

“I feel so bad for her,” said her roommate, Elsie Fink, a feisty 73-year-old. “There’s no way she would want to live like that.”

“When they come in to clean her and to treat her sores, it sounds like she’s trying to cry because it hurts.”

Elaine came to the nursing home seven years ago. Her expenses have exhausted all the money from her estate, so the Medi-Cal program is now paying her bills. With no living relatives, she is a ward of the state.

“We knew her when she was up and walking around,” said Brykman, who says she is intimately acquainted with every patient because, unlike most nursing home owners, she is on the job daily.

“In another country,” Brykman said, “Elaine would be allowed to die with dignity. But we are obligated by law in this country to do all we can to keep her alive. If her heart stops, we have to take aggressive measures to revive her.”

Like a half-dozen other patients at Brykirk and thousands across the country, Elaine is a shell of her former self. Experts say that neither state law nor the new federal law resolves the ethical and legal dilemma posed by these incapacitated patients with no relatives who must kept alive even though they have very little to live for.

There are no statistics on the number of patients in nursing homes nationwide who are lingering in a vegetative status, without friends, relatives or a legal representative.

But a poll of nursing homes by the National Center for Health Statistics found that about a quarter of all patients have no visiting family members. Additionally, 46% of all patients were found to be suffering from senile dementia or chronic organic brain syndrome.

It is doubtful that the lives of these patients will be changed in any dramatic way by the new reforms, consumer groups acknowledge.

Many of the new rights given patients under the new federal law--the right to choose activities, schedules and health care, to obtain copies of records promptly, to be notified before a change of roommate, to be advised how to appeal transfers, to be informed in writing of legal rights, to be given direct access to a doctor and to be informed in advance of medical treatment--are likely to be lost on patients like Elaine.

Similarly, the new rights bestowed on a patient’s relatives--the right to gain immediate access to the facility, to be notified of accidents or a change in the patient’s condition, to be given notice of a patient’s transfer--is meaningless to thousands of patients who have no relatives kin.

At Brykirk, about 10 of the 43 patients have family members who visit daily or weekly. The others visit monthly, annually, or not at all. “Unfortunately, there are some relatives who simply ‘dump and run,’ ” Brykman said.

“We see all kinds,” she said. They include several very concerned spouses like Emily Butler who for two years has been coming twice a day to visit her 67-year-old husband, who has advanced Alzheimer’s disease. She eats with her husband at noon, feeds and shaves him--then comes back to visit again in the evening.

For most patients, Brykman said, the quality of life depends largely on the kind of care they get from nursing assistants, who are paid between $5 and $6 an hour to empty bedpans, lift and move patients, feed, dress, shave and diaper and exercise them.

How gently the patients are handled, whether they are spoken to lovingly and touched with sensitivity, kept clean and given appropriate exercise, makes “all the difference in the world,” Brykman said.

Brykirk Extended Care Hospital prides itself on the hands-on patient care provided by a dedicated core of nursing assistants. The number of nursing hours per patients is considerably higher than that required by state law. Records show that nurses at Brykirk provide from 4.3 to 4.5 hours of care per patient per day, compared to a minimum requirement of three hours.

“Our secret, to the extent we have one, is our steady staff,” said Barbara Van Kirk, a part-owner of the nursing home who serves as its director of nursing.

Staff turnover at Brykirk is low. Compared to some nursing homes where the entire staff of certified nursing assistants turns over during the course of a year, only two out of 20 such positions opened up at Brykirk last year.

Van Kirk faulted the new federal law for failing to appreciate the importance of these generally overworked, underpaid nursing assistants. The law does not require nursing homes to hire more of them or pay them higher wages.

The law does require additional duties of registered nurses. Most nursing homes, depending on their size, employ one to three RNs, paying them between $18 and $22 an hour. But Van Kirk said the RNs’ extra efforts will be devoted to paperwork--filling out new patient admission forms that are so complicated that the directions how to fill them out are 90 pages long.

Consumer groups say that one of the greatest contributions of the new law is restrictions it places on the use of patient restraints.

By the nursing home industry’s own estimate, nearly 80,000 patients are either tied up or drugged at any given time in California. The new federal law bans the use of physical restraints or psychoactive drugs administered for “discipline or convenience” rather than for medical treatment. Additionally, health officials have tentatively agreed to enact state regulations that would require staff to get permission from patients before drugging, tying them up, inserting tubes or giving other medical care.

At Brykirk, Van Kirk acknowledged that some patients are “on more drugs that you could shake a stick at.”

Jane, for example, appears to be a tranquil lady with a nice, stately demeanor, who talks lucidly about her life in Virginia where she used to work as a medical secretary. The 79-year-old woman is the most heavily medicated patient in the facility. Without the drugs, Van Kirk said, she was so uncomfortable, depressed and combative that she drove away even her own relatives. Hallucinations once prompted her to call police and report her roommate was being beaten. They arrived in full force only to discover the complaint was unfounded.

“There’s definitely a place for these drugs,” Van Kirk said.

But she praised the new federal law for requiring nursing homes to re-evaluate a patient’s condition periodically to determine whether medications are still necessary.

As of February, Van Kirk said, 17 patients at Brykirk were receiving anti-depressants, anti-anxiety drugs, anti-psychotics, or anti-manic medication.

Over the course of a month, three had their dosages reduced significantly, while three others were weaned from anti-psychotics and two more were taken off anti-depressants.

In one instance, Van Kirk recalled that a man who was “completely zonked out and hallucinating” became “the most alert, most congenial man . . . able to direct his own affairs, balance his checkbook and talk to his attorneys.”

Van Kirk attributed the successful outcome to the attentive nursing care that accompanied the drug-reduction program. “More eye contact, hand-holding, use of touch therapy, giving verbal assurances and explanations--that’s what helped these patients get off drugs,” Van Kirk said.

As for physical restraints, Van Kirk said that since February, she has managed to release three out of 16.

“We looked at patients and said, ‘Gee, maybe that one could make it.’ ”

Take 91-year-old Fauna.

This wiry wisp of a woman came to Brykirk from her home in San Marino four years ago. Never married, she worked for the phone company for 30 years. With her thinning gray hair slicked back from her forehead, and her eyes squinted intently, she roams the hallways in her wheelchair, mumbling heatedly to herself. Quite confused, she is described by Van Kirk as “a bit of a loner” and very unpredictable. The challenge was for all staff to be on the alert when her wheelchair safety bar was removed.

“The fear was that she would try to stand up,” Van Kirk said. “But so far, she has not.”

Across the nation, nursing home administrators are bracing for problems they expect will occur when some patients are released from their restraints.

“There is pretty prevalent anxiety in the industry about this,” said Marshall Kapp, professor at the Wright State University School of Medicine in Dayton, Ohio, who has studied the legal implications of the new nursing home law.

He said that many nursing home administrators fear that unrestrained patients will fall and their relatives will sue because the new law does not explicitly exempt the nursing home from liability.

Kapp said his research shows that more injuries occur to people trying to get out of restraints than to people getting injured because they were not restrained. “The key is what is done in the place of restraints,” he said. “You can’t just release somebody and say, ‘Go!’ or of course they’ll do badly.”

Brykman said that the new law has opened vast opportunities for entrepreneurs.

Charging Top Dollar

They are marketing new devices--positioning pillows, wheelchair seat belts, special foot rests--which many nursing homes are purchasing as substitutes for restraints.

The problem, Brykman charged, is that the suppliers of these devices are charging the government-sponsored Medi-Cal program top dollar.

For example, she pointed to one salesman who tried to sell her some positioning cushions. She said he quoted her a price of $42 per cushion if she were to purchase the pillow directly, but $93 if he were going to charge the Medi-Cal program.

Brykman said she reported this matter and supplied documentation to the proper authorities, “but judging from what I’ve seen in the past, I don’t have high hopes that anything will be done about it.”

Eric Seiberlich, an investigations supervisor in the attorney general’s Bureau of Medi-Cal Fraud, said he could not disclose whether the matter is being investigated.

Pat McGinnis, an official with California Advocates for Nursing Home Reform in San Francisco, said that medical suppliers are busily gearing up for new business opportunities created by the new law. Typically, she said, the suppliers charge the Medi-Cal program “big markups . . . and nobody’s doing anything about that.”

The California Medi-Cal program spends about $2 billion a year on nursing home care. Half the money comes from the federal government and half comes from the state.

At Brykirk, 90% of the patients are enrolled in the Medi-Cal program, which pays the facility $64.74 per day per patient.

The nursing home is operating at a loss, records show. Brykman and Van Kirk pay themselves salaries at a rate of $18 an hour.

“We have taken the road here of reduced profitability, which you need to do if you want to provide quality care for $64 a day,” Brykman said. “It really makes me sick to see all the waste and abuse in the Medi-Cal program that in the long run just reduces the pot of money available for good patient care.”