Burden of Care

LITTLE ROCK — They called him John-John. He was 32 years old and had been sick much of his life. Diabetes. Congenital heart disease. Chronic hepatitis-B infections. Down's syndrome. Kidney problems.

"He was a miracle," said his mother, Rickie Lockwood of Little Rock. "He was so sick, and we were told 30 different times he wouldn't make it. But he always did."

Then came the time he didn't.

What began as decreased appetite soon grew into a fatal illness for the longtime resident of the Conway Human Development Center.

The center's doctors and nurses, who care for 576 residents, often face a variety of medical conditions with each person, complicated by mental retardation. Their patients usually can't tell them what is wrong.

John-John died Feb. 11 of kidney failure. And Lockwood buried a piece of her heart with him.

"He may have been 32 years old, but he was my baby," she said. "He functioned at the level of a 12-month-old. But he knew me. He laughed. He cried. We all loved him."

Members of the Conway center staff attended visitation at the funeral home as well as the funeral.

"It meant a lot to us," Lockwood said. "The staff were so supportive and took such good care of him. We even got cards from staff members who used to work with him. It was so special."

But since that time, three evaluations have cast doubt on the medical treatment her son received during his last week at the Conway center. The evaluations were done by the state Office of Long Term Care and two members of a newly formed death review team.

Concerns include: The unconventional method a Conway center doctor used to administer an antibiotic. Whether an on-call doctor reacted quickly enough to John-John's worsening condition.

Whether John-John should have been taken to a hospital much earlier.

M. Catherine Lyon, a consultant hired by the state Department of Human Services, is the former director of that agency's Adult Protective Services unit.

Lyon concluded that the case should be investigated by legal authorities "to determine if medical neglect" as defined in the Adult Abuse Act had occurred.

The Conway center has been a lifeline to thousands of families since it opened as the Arkansas Children's Colony in 1959. Residents born with complex diseases have been treated well and outlived their expected life spans. Some have called the center home for more than 30 years under the nurturing care of the nearly 1,200-mem- ber staff.

"When I first took John-John to live at the Conway Human Development Center, it was the hardest thing I had to do other than bury him," Lockwood said.

"I didn't want to leave my baby, but I had to. He was sick day and night, and I couldn't take care of him anymore. You can do it for a while, but not for 32 years."

Many on the staff were like a second family to him, and he flourished at Conway, she said. "They helped give my son the dignity and the humanity he deserved, that they all deserve out there," she said. "I don't know what we would have done without Conway."

But the center, once praised as a national model, has faced intense scrutiny since February 2001. There have been seven state investigations and three federal investigations. These investigations have criticized the Conway center for failure to report abuse and failure to protect residents.

The Arkansas Democrat-Gazette has spent a year investigating the Conway center, going beyond the regulators.

Several committees and reports were created after the newspaper questioned specific deaths, the use of the Do Not Resuscitate Policy, and when autopsies are performed.

In addition, the state Office of Long Term Care is investigating medication errors from 2001 at the Conway center.

In March, the Democrat-Gazette informed DHS officials about a cluster of deaths at the Conway center in 1998, as well as more recent deaths that might need evaluating.

The newspaper obtained death summaries under the state Freedom of Information Act. Those records seemed to show some patients had died as they waited for a decision to transfer them to a hospital.

The question of a late hospital transfer was raised last year by the parents of JR Lawless. The 17-year-old boy was having seizures, his mother said. A Conway center doctor did not believe he was sick enough to be sent to a hospital, the mother said.

JR's mother called a doctor at Arkansas Children's Hospital in Little Rock who agreed to admit the boy. Hospital records show JR had pneumonia.

DHS Director Kurt Knickrehm asked David Fray, director of Developmental Disabilities Services, to form a team to review the Democrat-Gazette's findings and all future deaths.

Fray's division oversees the state's human development centers.

"The team initially looked at 50 deaths and whittled that down to 10 that looked like they needed closer review," Fray said.

Fray had team member Lyon examine procedures in the 10 cases while another team member, Dr. Gil Buchanan, was asked to evaluate medical care. Buchanan is a pediatrician and medical director of the DHS Children's Medical Services.

The newspaper supplied John-John's mother, Rickie Lockwood, with the evaluations on her son's medical treatment at the Conway center. The records contained several surprises, she said.

"Talked (with) mother concerning use of Rocephin suppository for his current illness," the file states, according to the Long Term Care evaluation. "She [mother] gave approval to the use of restraints (holding him) to administer the suppositories."

And in the Lyon report, "Permission was obtained, albeit three days after treatment began, to use restraint on the client in order to administer the medication which leaves the perception the client may have been traumatized to some degree with each ineffective rectal administration."

Lockwood was stunned.

"I would never have done that," she said, fighting back tears. "He was so afraid of being restrained. I wouldn't even let the dentist use restraints on him to pull an infected tooth.

"It hurts so much to think that John-John was afraid, and I wasn't with him. It's something I can't think about."

In the medical world of the Conway center, the dividing line between calm and chaos can disappear in seconds. For more than a year, there have been only two full-time doctors to meet the complex medical needs of nearly 600 residents.

With medical histories complicated by epilepsy, spina bifida, autism and Down's syndrome, the possibility always exists that the onset of a high fever or a prolonged seizure can lead to death.

Statistics from a Dec. 31, 2001, report offer a glimpse at just how complex the medical problems are: 344 suffer from seizure disorders.

228 are unable to walk.

278 have cerebral palsy.

475 are profoundly mentally retarded.

Approximately 153 required total care. Those medically fragile need tracheotomies, gastrotomies, feeding tubes, positioning, scheduled medications and respiratory care.

"Given the number of individuals served at the CHDC, the degree of medical need and the longevity of most of their clients, one must assume they are for the most part performing their role well," Lyon concluded in her evaluation of the 10 cases.

"However, the lack of general oversight and accountability leaves a tremendous gap into which society's most vulnerable citizens can, and as the above evidence suggests, do fall."

For John-John, the medical treatment being questioned began shortly after he became ill on Feb. 3. On Feb. 5, he was seen for coughing and wheezing at the Conway center clinic where records state that Dr. Denise Thomas, the center's medical director, prescribed the antibiotic Rocephin - 1 gram rectally for 10 days.

Thomas declined several requests for an interview.

In the past, John-John had responded well to Rocephin given as a shot or intravenously.

Why did Thomas order that the drug be given rectally? According to the evaluation by Buchanan it was because, "The patient had bleeding tendencies."

However, "The blood level of antibiotic achieved by this administrative method is in question," he added.

Rocephin is made by Roche Labs and has been approved by the federal Food and Drug Administration.

"Rocephin is to be administered as it says on the package insert and as the FDA approved it," said Terence Hurley, director of public relations for Roche in Nutley, N.J.

That FDA approval is only for the shot or intravenous use, a Roche nurse said.

The Conway center asked a local pharmacist to alter the drug so it could be used rectally. The drug in that form is not only unconventional, it is more expensive.

Records show that it costs $39 as an injection and $58 after it was altered. The first order of the altered drug was delivered in October 2001. In response to a state Freedom of Information Act request, a pharmacist for the Conway center provided a "best estimate" that fewer than five patients have used Rocephin in the altered form.

Four other drugs have also been altered and used on three patients, documents stated.

"It is legal for a physician to request a pharmacist to compound drugs," DDS Director Fray said. "That can be done at the physician's discretion. And the physician and pharmacist share the responsibility for that decision."

In the case of the altered Rocephin, Lyon wrote: "There is no documentation to support what warranted or otherwise necessitated the change in administration [of the drug] that under practical review was clearly ineffective."

Around the same time, the state Office of Long Term Care looked into John-John's death.

That office also wondered why the unconventional form of the drug was used on John-John.

"Prudent nursing practice would lead nursing staff to seek and document an explanation for the rectal administration of the drug in order to establish responsible nursing practice and safety of the client," wrote Office of Long Term Care registered nurse Melanie Taylor.

"The record does not include such documentation."

In fact, the records do not include the dates and times the drug was administered or who administered it, Taylor stated in her report.

Lyon further criticized the center's staff and the doctor who was on call the weekend before John-John died for not reacting quickly enough. That doctor was not a full-time physician at the center, but is one of several doctors paid hourly to work weekends and nights.

"[D]irect care staff were unable to generate sufficient interest, concern and/or action from Dr. [name deleted ] relative to the client's condition. Supervisory nursing involvement was equally as sluggish," Lyon wrote.

The Long Term Care Office addressed a similar issue: "There was no evidence that the nursing staff reported the client's physical deterioration to a physician until Feb. 9, despite orders on Feb. 5 to have the client return to the clinic if he was not improving."

Buchanan concluded that John-John should have been more closely monitored but, with his serious medical conditions, the outcome would probably have been the same.

"Most of the clients in this death review had been long time clients at the Center, and indicated a long successful relationship with many, many more things done correctly than incorrectly," he wrote.

"In all the cases reviewed, I felt that the care offered was timely and appropriate," he wrote. Buchanan did flag some concerns in his report.

Like Lyon, Buchanan addressed the on-call doctor situation.

"Several of the problems identified relate to the medical coverage offered when the full time staff is not on campus," he stated. "Ideally, a physician would always be available on site.

"This level of staffing is not realistic in the light of currently available physician staffing options and funding," he wrote.

The concerns voiced by Buchanan and Lyon were not new.

The potential problems with using on-call doctors to work nights and weekends were addressed in a special University of Arkansas for Medical Sciences report in May 2001. Those part-time doctors, referred to as ''moonlighters'' in the report, "have not been trained to care for persons with disabilities and may not have the skills to practice independently," the UAMS report stated.

"In addition, the coverage provided by these moonlighters appears haphazard, since there are periods of time when no immediate physician coverage is available," the report stated. The "moonlighter" is permitted to leave the campus. At those times, emergency coverage is provided by two local doctors taking calls from their homes.

"The moonlighters may or may not carry a beeper, or may simply leave word where they are to be contacted if needed in an emergency," the report stated.

One of those doctors told the State Medical Board in 1996 that he "habitually and intemperately used controlled drugs, to include marijuana, darvocet, hydrocodone, and percocet. He sought medical treatment for his abuse."

The medical board placed him on probation for five years. That was lifted in May 1998. Records show that the doctor began working for the Conway center in January 2001. After an interview with the Democrat-Gazette, the center's superintendent Bob Clark directed that the doctor not work at the Conway center anymore.

He also asked an employment referral company to perform background checks with the State Medical Board on all current and future physicians who might be hired for the center.

The UAMS report was particularly concerned with how the most seriously ill patients were treated.

Staff physicians "feel uncomfortable with the level of medical acuity of some patients in the Infirmary," the report stated.

The UAMS report called for a special program "to ensure that patients who meet hospital admission criteria are appropriately transferred to the hospital."

"Patient transfers, referrals and admissions are often more of an individual-physician initiative rather than following a defined previously agreed upon set of criteria," UAMS reported.

"Medical moonlighter coverage, with limited medical staff supervision, and occasionally LPN nurses on nights without RN supervision, is inadequate staffing for acutely ill patients who already meet hospital admission criteria."

Of further concern to UAMS reviewers : "Clinical pathways for common clinical presentations (i.e. seizure, antibiotics usage, bowel programs) have yet to be implemented. These would standardize medical practice."

Dr. Eldon Schulz, chief of developmental rehabilitation pediatrics at UAMS, described the medical care at the Conway Human Development Center as "adequate," but "The Infirmary is just not equipped to handle the type of illnesses they have out there."

Would he put his family member there?

"In the infirmary? No."

Or in the living units for the medically fragile?

"Maybe."

The UAMS report stated that the Conway center doctors did not have outside peer review, and "the CHDC is in critical need of outside consultants."

Outside peer review has since been established.

"Being required to meet the needs of such a client-mix is recognized as being very difficult and may not be in the best interest of the clients," the report noted.

Schulz explained: "For the first 20 years of its existence, the Conway center's medical section filled a niche that no one else could fill and no one else wanted. Now, we have so many new standards and techniques."

In July, the Conway center will have a full-time infection control nurse and a consulting doctor.

Schulz said updating the medical system will take time.

"We're talking a significant amount of work because we're moving a system that has not moved philosophically in a while," he said.

DDS Director Fray hired UAMS in May 2001 to help develop infectioncontrol procedures and to update standards of care at the Conway center.

The development centers fall under DHS jurisdiction because their funding is channeled through the agency and the centers' staff are state employees.

However, that jurisdiction is shared with the Developmental Disabilities Services Board, a seven-member citizen group appointed by the governor.

The two entities have not always agreed on how to operate the development centers.

A recent attorney general's opinion placed primary control in the hands of the DDS Board, not the state agency.

Fray recommended that DHS hire a medical director and a quality-assurance director to be over the medical staffs at the human development centers.

A DDS Board subcommittee rejected the idea. "We did not wish to fragment the chain of command at the centers," Ron Carmack, chairman of the DDS Board, explained. "We already have quality assurance teams in place at each center.

"We did not approve the direct line of authority coming from Little Rock."

In December, DHS Director Knickrehm proposed a medical-incident review panel.

It would include the existing quality-assurance staff from each center, and they would pool their expertise. That idea was accepted by the DDS Board.

"Everybody (the superintendents and the DDS Board) wants to improve medical care and quality," Carmack said.

"And we are not going to accept anybody staking a position that they care about quality, and if you disagree about how that comes to pass, you don't care. We care deeply. We feel this is best."

The death review team will have its first full meeting in the next few weeks.

Deaths at state institutions must be reported to the county's coroner.

If the coroner has questions after an initial review, the case is referred to the State Medical Examiner.

Patrick Moore, Faulkner County coroner, said he has gone to the Conway center numerous times over the years.

"We actually take a look at the body, but I'll be honest with you, some of the diseases those folks have are exotic to me.

"I don't know if I could look at them and pose the question 'Were they treated correctly before they died?' " he said. "I see all the medication they are on, and it's like 'Wow. How was the person still alive?' "

The DHS death review team will have to decide what to do with concerns raised about four deaths, including John-John's.

For John-John's mother, there are heartbreaking days ahead.

"When I saw those evaluations on my son's death, my feelings were overwhelmingly devastated. I read and reread them and tried to imagine what John-John was going through without someone being there for him," she said.

The "whys" pour out of her as do the tears of regret.

"I want to know what happened. What went wrong? Did the on-call doctor not have the level of expertise ? Were they understaffed? If people are being pushed to the point of exhaustion, they can't function and they will make mistakes," she said.

"Part of me is angry, but deep down I'm really hurt. Why wasn't I called immediately when he got so sick?" Lockwood's aunt, whom she considered a second mother, died during John-John's last days at the hospital.

"I hadn't slept for 48 hours, and I slept in that day," she said. "I got there too late. He had died 15 minutes earlier - without me."

She is grateful that a social worker, a team member and the Conway center chaplain were with John-John when he died.

And she is fiercely loyal to the Conway center and its purpose.

"I want to find out what happened to my son. But I don't want this used as an excuse to close down the institution," Lockwood said. "I want this to be used to improve the care. This can't be turned into a witch hunt. I want any negatives turned into positives.

"No one understands the fear that parents have that someone will come in and take these centers away. The move to deinstitutionalize has come late to Arkansas, but it is here.

"The Conway center saved our lives. I want to tell everyone, 'Don't throw the baby out with the bath water,' " she said.

"These places need to be here for the parents who have younger children now. Parents who don't think they will ever place their family members here. Because as they get older or become sick, they will need places like Conway.

"And I want it to be here for them, like it was for John-John."

(To receive the entire copy of the UAMS report or the death evaluations, call (501) 682-8677.) Deputy Editor Frank Fellone supervised this series.

Next:

Hope and a future for clients and families.

Research assistance for this series was provided by Brenda Looper, Dauphne Trenholm, Angie Young and Chris Spencer.

Series editors include J.J.

Thompson, Bill Simmons, Griffin Smith, Frank Fellone, Sandra Tyler and Denise Dorton.

Barry Arthur was the photo editor. Doug Grimsley and Matt Spence were page designers. Kirk Montgomery directed the graphics.

Photographers include Staton Breidenthal, Stephen Thornton, Karen E. Segrave and Benjamin Krain.