SCI/D Conferences at the Riviera

Spinal cord health care professionals make this year’s conference in Las Vegas one to remember, setting the bar high for next year’s meetings in Orlando.

By Rob Ingraham and Chris Pierson

“I never thought I would wax sentimental about the Riviera,” said American Paraplegia Society (APS) President Indira Lanig, MD, at the beginning of the first session of APS’s 52nd conference at the Riviera Hotel in Las Vegas last month, “but this week, I do find myself waxing sentimental. Coming here year after year for the last 20 years, I’ve seen incredible things develop. It was here that I met [the late Executive Director of United Spinal's founding association] Jim Peters and was struck by his vision of how patients and researchers could partner to improve care. And it is because of his vision and generosity and that of United Spinal Association, and because of the vision and leadership of the board and members of the APS, that we are standing here today.”

Many of the nearly 1,000 members of APS and its fellow organizations for professionals who work with spinal cord disorders, the American Association of Spinal Cord Injury Nurses (AASCIN) and the American Association of Spinal Cord Injury Psychologists and Social Workers (AASCIPSW), were in a nostalgic mood about this years conferences at the Riviera Hotel and Casino in Las Vegas. Coming 32 years after Jim Peters nurtured into being the first joint meeting there of APS and AASCIN and 20 years after AASCIN joined the party, these conferences signaled the end of one era and the hopeful beginning of a new one. Next August, the associations will meet in Orlando, Florida where a fourth slate of presentations for consumers of SCI/D health care will be added.

The excellence of the presentations, too, was cause for celebration. As one enthusiastic (and typical) attendee put it on a survey conducted by the Marketing department at the Market Place Cafe (where-in addition to internet service, popcorn, mugs, and flamingo pens-coffee was indeed served): “This is the number one conference. People come from everywhere to be here-Canada, Puerto Rico…everywhere! The most up-to-date information on spinal cord injury is here.”

As always, attendees had a varied menu of topics to choose from over the three days of presentations (live and on posters) and symposia from September 5 to 7, including state-of-the-art care for pressure ulcers and the interaction of general physical health and multiple sclerosis (APS); the emotional development of adolescents with spina bifida and caring for dying patients (AASCIN); emergency procedures for evacuating people with disabilities and predicting depression among family caregivers (AASCIPSW); and much, much more.

Following is a sampling of reports from the 2006 SCI Conference presentations.

A New Kind of Nervous System: Brain-Computer Interfaces

This year’s keynote address for APS was delivered by Jonathan R. Wolpaw, MD, chief of the Laboratory of Nervous System Disorders at the Wadsworth Center in Albany, New York, on the timely subject of braincomputer interfaces (BCIs) for restoration of communication and movement.

With BCI, Wolpaw explained, “a brain-computer interface uses brain signals to convey intent. It doesn’t use peripheral nerves and muscles, and this is a very crucial distinction. It doesn’t use muscles; therefore, it can be used by people who have little or no muscle control. It represents a new kind of assistive device. It can provide communication and control to people who are completely paralyzed.”

Wolpaw outlined the mechanics of translating impulses to actions, explaining that with all kinds of BCI, the object is to create “a new kind of nervous system” as efficient and stable as the one it replaces. While that may seem like a remote possibility, interest in BCI has grown exponentially in just the last six years. Because of its complexity, BCI is extremely multidisciplinary, involving neuroscience, bioengineering, psychology, mathematics, computer science, and rehabilitation medicine.

Wolpaw believes that electrophysiological signals are best suited for BCI research because they “are most easily obtained and are most practical at present.” These signals are processed to produce “signal features” (for example, sensory motor rhythms or the firing rates of individual neurons) and then these are translated by a computer algorithm into various device commands, which can control, for example, a cursor on a screen, a motorized wheelchair, or eventually even a neuroprosthesis, Wolpaw said. (Wolpaw demonstrated the promise of the latter with a video of a monkey somewhat clumsily but effectively controlling a robotic arm to grab pieces of banana from a technician.)

Wolpaw talked about three ways to acquire neurological signals-from the skin, from within the brain, or from the surface of the brain-and assessed their respective practicality for BCI. The least expensive, least invasive method involves placing electrodes on the scalp to read brain signals through the skin. This method, producing an electroencephalograph (EEG), involves few risks to the subject and can easily be adjusted as needed. The second method, which received major media attention this summer because its subject, a person with high tetraplegia, was able to move a cursor and play a simple computer game using only signals from his brain, involves surgically implanting a small electrode with an array of wires protruding from it (Wolpaw described it as ‘a tiny bed of nails’) into the cortex. A third less well known procedure measures electrocorticographic (ECoG) signals; it entails placing an electrode directly on the surface of the cortex. ECoG measurement is conducted mostly in work with epilepsy, but the research findings have applications for SCI, as well.

The latter two methods share with each other (and differ from the first method) high resolution reading of neuronal signals. The downside is that they are higher risk for the patient and, because they are stationary while neuronal pathways can be highly plastic, less stable in the long-term.

A surprising point Wolpaw made was that his team’s subjects, who wear electrodes on their skin, are just as competent at moving a cursor as the subject of the study that created such buzz over the summer. He demonstrated his point by playing video of two subjects’ cursor movements one after the other, asserting that there was no difference between the EEG method and the cortical implant. “We haven’t yet reached the point,” he said, “at which actual implantation of electrodes is justified. The method needs considerably more evaluation, both in animals and in humans.”

The base of potential users of BCI technology around the world, Wolpaw said, includes people with severe cerebral palsy, stroke, spinal cord injury, and ALS. “The ALS group is particularly prominent in the initial development to bring computer interfaces.” Wolpaw suggested that as many as 4 million people with ALS could benefit from a perfected BCI; this would include the estimated 3.6 million who, following a diagnosis for ALS, choose to die rather than go on a ventilator. The impact such technology could have on quality of life for people with severe mobility impairments like ALS would be profound. “The issue of whether people should elect to die becomes a little more complicated and requires more thinking and discussion,” Wolpaw said.

Funding and Legal Issues: Practical Advice

The keynote address for AASCIPSW was by attorney Joseph L. Romano who, with moderator Alan L. Goldberg, PsyD, ABPP, JD, tackled the increasingly contentious issue of insurance coverage in a session entitled “Funding and Legal Issues for Individuals with Spinal Cord Injuries and Illnesses: Practical Advice.”

Romano began his presentation with a startling premise: “What people don’t realize is that obtaining health insurance is an adversarial process.” From there he reeled off a number of unsettling statistics: “Recent studies show that 40% to 50% of the time the health insurance coverage information received from the health insurer is, wrong, outdated, misleading, or incomplete. This is a national disgrace.”

Romano’s fundamental theme was that “nobody wants to pay for long-term care,” and the only way to be sure that your insurance carrier lives up to their contractual responsibilities is to approach the issue armed with the best information possible and, not surprisingly, competent legal counsel.

One of Romano’s recurring warnings was about insurers acting in “bad faith.” Since your insurance company has accepted your premiums, Romano said, “they have a contracted duty not to deny benefits without reasonable cause.” Examples of unreasonable settlement practices, or bad faith, include:

• Misrepresenting pertinent facts or policy contract provisions relating to coverage
• Delays in responding to a claim
• Failure to adopt and implement prompt investigation of claims
• Refusal to pay a claim without adequate investigation
• Failure to affirm or deny coverage in a reasonable amount of time
• Delaying the investigation of claims, or the payment of benefits, by requiring submission of several forms which contain essentially the same information
• Exploitation of an insured person’s vulnerable position
• Abuse of subrogation rights • Unfair imposition of increases in premiums for filing of claims
• Oppressive demands
• Not attempting, in good faith, to effectuate prompt, fair and equitable settlements on claims in which it is reasonably clear that the company is liable.

Romano cited a recent two-year survey of 44 California verdicts for insurance company bad faith which showed that total punitive damages were $165 million. “The threat of punitive damages, attorney’s fees, interest and court costs, should be a very effective tool to convince insurers to deal in good faith.” He also told attendees to ask themselves if an insurer’s reason for denying benefits passes the “gut test.” If the insurer’s reasons feel instinctively unfair or unreasonable, they probably are.

Romano said that the American Medical Association has reported that about 50% of insurance company guidelines for what is medically necessary or not necessary are not supported by scientific studies. He suggests always questioning an insurer’s statements by asking, “What study proves that?”

He also addressed the issue of “subrogation,” which is law in most, if not all, states holding that insurance companies have the right to seek reimbursement of medical costs they have incurred if the insured client wins a financial settlement from a third party whose negligence caused the SCI. These laws are designed to prevent an injured person from getting “double recovery” of the costs of his or her medical expenses. Romano explained, however, that an injured person has no obligation to sue the third party for negligence. They may not believe in lawsuits or they may not believe that the third party is guilty of negligence. “But insurance companies all over the country are starting to sue their own clients to force them to sue the third party so they can recover their money!” He cited a USA Today article about the practice: “The drive for more revenue has prompted HMOs and other managed health care plans to demand reimbursement from patients who receive settlements or court awards for injuries that require medical care. ‘It’s very much an increasing trend, says Roger Baron, law professor at the University of South Dakota who has studied the issue. ‘When things started getting tight, HMOs started really going after these dollars. It’s a billion dollar business.’” (William Welch, USA Today, July 18, 2001, page 11A).

Romano cites a legal maxim that states, “The law assists those who are vigilant, not those who sleep on their rights.” He urges that people dealing with catastrophic SCI be vigilant. “Don’t sleep on your rights. You can make a difference!”

For more information on these and other legal issues affecting individuals with SCI, Romano, who is based in Norristown, Pennsylvania, and can be reached at www.josephromanolaw.com.

“A Helicopter Full of Babies”

“Our organization felt like we were ready for any disaster that might happen, but no place was ready for what happened in New Orleans and we were certainly no exception.” This was how Susan B. Greco, MSN, RN, CRRN, Director of Rehabilitation Nursing at Touro Rehabilitation Center in New Orleans introduced her address for the American Association of Spinal Cord Injury Nurses called “SCI, Hurricane Katrina, & Evacuation: Applications to Rehabilitation.”

“We met all the standards for the Joint Commission on the Accreditation of Healthcare Organizations (JCAHO) and the Commission on Accreditation of Rehabilitation Facilities (CARF) for hurricane evacuation and preparation, we participated in state and local disaster drills and all our employees had to practice every year and demonstrate their competence in the evacuation of out patients.” Nothing, however, worked as planned and Greco and her team found themselves improvising their way through the worst hurricane to hit New Orleans in 100 years.

Greco explained that Touro, a 154-year-old institution, had been closed only once before and that was during the Civil War. After Katrina, “we closed our doors for 28 days. That was the longest time that Touro has ever been closed.” She noted that Touro and Children’s Hospital were the only hospitals open in New Orleans parish until February, 2006 and “eight major hospitals are still closed.” The SCI rehabilitation unit was on the ninth floor of a 10-story building in the 6-building Touro complex and the hospital’s heliport was on the roof of a 4-story parking garage.

Greco said they discharged as many patients that they felt were safe enough to leave and those that could tolerate a 12- to 14-hour car ride to evacuate from the city. “When you try to evacuate a million people and there are only five or six avenues out of town it takes a long time to get out of there.”

Communication was Touro’s biggest problem, she said. “Communication was a nightmare. Cell phones didn’t work, landlines didn’t work, we couldn’t call outside, we had no way to communicate with anybody. The only way we could communicate among ourselves was through a walkie-talkie we used for our escort service. That was the only thing that worked.”

By Wednesday, August 31, “We weren’t feeling much like a hospital at that point in time and we just started evacuating all of our incubated babies and our ICU patients.” With 22 babies to fly out of harm’s way, “We had a helicopter full of babies,” Greco said. They also allowed employees to bring their immediate family members (and pets) to the hospital for shelter and Greco said that a lot of people volunteered simply to have a safe place for their families. “I personally brought my mother who is 84-years-old,”she said.

“We identified everybody with an arm band. Everybody had different colors—patients, family members, workers, medical staff, etc.” By Thursday, September 1st, everyone had been safely evacuated and they closed and locked the doors.

Touro has made a number of changes to their operation in the wake of Katrina, Greco explained. They had a well dug for cooling the building and also for other non-potable uses such as bathing. They doubled the capacity of their power generation system to include five backup generators for each of the five existing generators. A 1,500-gallon fuel tank was installed to allow the generators to run for five to six days. Additional onsite security officers were hired; plans were developed to reduce patient volume by early discharges; train more volunteers; revise the distribution protocol for drugs to give patients their medication for a longer period of time; they purchased more hands-free lights such as lanterns and glow sticks; and many more MREs (Meals Ready to Eat) were purchased. Agreements have been struck with other facilities to send the most critical patients and a decision was made that having employee family members and pets at the facility didn’t work out well and, henceforth, only essential personnel and volunteers will be allowed to stay at the facility during an emergency.

Greco also had high praise for the “Evacusled” which is an evacuation device built into the patient’s bed. When deployed, it “cocoons” the patient and mattress together and the patient, mattress and Evacusled are then pulled off the bed deck. With 25 wheels on the underside of the Evacusled, the rescuer rolls it down hallways and stairwells. It involves no lifting, only pulling and one person can evacuate one patient Greco said that “every staff member in the hospital has been taught to use this device; every housekeeper every dietary person, people in finance, everyone.”

For more information of the Evacusled, visit www.evacusled.com.

Rob Ingraham is senior editor and Chris Pierson is managing editor of Action.