Cynthia Black helps her brother, Kenneth, get comfortable in his bed at Ruby Memorial Hospital. Finding a permanent placement for Kenneth, who needs long-term care with a ventilator, has been difficult. He was moved to a veterans’ facility in Pittsburgh on Friday, but that probably will be short term. PHOTO BY TAMMY SHRIVER /Times West

Seeking long-term care

Vietnam vet afflicted with ALS needs permanent bed

By Mary Wade Burnside
Times West Virginian

MORGANTOWN — Cynthia Black pulled a blanket up over her brother Kenneth’s legs and tucked him in his bed at Ruby Memorial Hospital last Wednesday as he lay motionless, watching soap operas on the wall-mounted television set.

She asked if he needed her to suction out his mouth — a symptom of the pneumonia he currently has — and without moving, he acknowledged her by mouthing the word “yes.”

Cynthia, of Grant Town, a patient service representative at University Health Associates, works in the adjacent Robert C. Byrd Health and Sciences Center. Until Friday, when he suddenly was moved to a veterans’ facility in Pittsburgh, the close proximity of her office allowed her to visit her brother often.

On this day, two days before the move, she had taken a mid-afternoon break to check on Kenneth, 62, a Vietnam veteran who has amyotrophic lateral sclerosis (ALS), more commonly known as Lou Gehrig’s disease.

The fatal disease, a progressive neurodegenerative condition that leads to the patient’s inability to move or have control over bodily functions, slowly has robbed Kenneth of his ability to walk and even move his limbs.

He is fed intravenously, and as of February, when he was admitted to Ruby with pneumonia, he has been unable to breathe on his own and now requires a ventilator to do this for him, which severely has curtailed his ability to talk — and therefore communicate — with most people.

Kenneth’s situation — the fact that he will be on a ventilator for the rest of his life and that he also requires kidney dialysis three times a week — makes finding a permanent placement difficult.

“They’ve been trying to find a place where he can be on the vent and get dialysis, and everywhere they go it’s a no-go,” Cynthia said.

Moving a patient on a ventilator to a dialysis treatment center requires staffing that adds to the cost of the vent bed, so a facility without that dialysis cannot be considered.

Cynthia estimated that ever since late February or early March, hospital social workers have been looking for a permanent facility that will take a patient with Kenneth’s needs.

The Pittsburgh veterans’ hospital probably will not be his long-term home, forcing another move perhaps even farther away from his family.

Even though Kenneth has more than one medical issue, his need for a ventilator-equipped space is the first obstacle. West Virginia, depending on which officials are asked, has very few or no ventilator beds for long-term patients. Marianne Kapinos, general counsel for the West Virginia Health Care Authority, noted that two moratoriums passed by the state Legislature, beginning in the 1980s, essentially have prevented nursing homes from maintaining vent beds or creating new ones.

The first piece of legislation, she said, prohibited additional nursing home beds to be dedicated to ventilator service, and the second law “said there shouldn’t be anymore vent service unless someone could show that it didn’t add any cost to the state,” Kapinos said. “Usually they are Medicaid beds, and that, in effect, has kept new beds from being opened.”

Because West Virginia does not have any long-term beds for ventilator patients, Cynthia already had accepted the fact that she probably would quit her job and move to be close to her brother after a placement was found.

But in May, after an otherwise suitable nursing home in Canton, Ohio, turned him down — because, according to Cynthia, Kenneth has asserted he wants to be a “full code” patient who would be resuscitated if necessary — a facility in Connecticut was mentioned.

The prospect of her brother being sent so far away upset the family.

“Anywhere he goes, it’s going to be difficult to visit,” she said. “Wherever he goes, I’d have to go with him. I have to leave my job and go with him.

“He would be completely by himself with no family.”

And even if Cynthia does quit her job to follow Kenneth, other siblings, such as oldest sister Geneva Maddox and youngest brother Cedric, who visited him Wednesday, would rarely get to see Kenneth, who would be left with spending his days watching TV without his loved ones checking in on him.

From a family of nine siblings, Cynthia remains devoted to Kenneth because they lived together in the family home as adults after everyone else had moved away, ever since Kenneth, or Kenny, as his siblings call him, returned home from serving in the Vietnam War in the early 1960s.

“We were the last two at home,” Cynthia said. “He came back home and he never left, and I never did leave.

“It was just the two of us and I had my daughter. It was the three of us. That’s why we’re so close.”

And on the days that the tracheotomy in Kenneth’s neck prevents him from making an audible sound when he tries to talk, Cynthia is the only one who can read his lips.

“Cindy really picked up on it,” said oldest sister Maddox on Wednesday.

Late Thursday afternoon, Cynthia was informed that her brother would be moved to the VA Pittsburgh Healthcare System (VAPHS), but that the facility would be a short-term solution. Friday morning, he was loaded into an ambulance and taken there.

Cynthia has mixed feelings about the placement, which occurred, perhaps coincidentally, the same day a reporter called Sen. Jay Rockefeller’s office, which then contacted the Louis A. Johnson VA Medical Center in Clarksburg. That hospital has been in charge of Kenneth’s case.

After worrying about the move, Cynthia noted that her brother seemed to be doing OK.

“He seems pretty comfortable with it,” she said Friday afternoon from Pittsburgh. “The nurses are talking to him, explaining everything to him, and he seems pretty comfortable with it.”

The possibility that he will be moved again still loomed, though, and as she faced the weekend, Cynthia did not expect any immediate answers. But if Pittsburgh is not Kenneth’s permanent home, Cynthia will be in limbo, unable to quit her job and move and therefore forced to make a longer drive and fewer weekly visits.

“I would be questioning that big time. Why send him somewhere else (from Pittsburgh) if you have the capability and you have a hospital setting?” she said. “It took us an hour and a half to get here. Why would you take him further and further away from his family when he could do it right there?”

However, it seems likely that the placement is not permanent. Officials at the VAPHS not only could not address Kenneth’s situation specifically, but also declined to provide much information about a patient with needs similar to his.

But of the system’s three divisions, the only one that can take patients on a ventilator is the University Drive Division, according to David Cowgill, the system’s public and community relations manager.

Systems spokeswoman Shelley Long said that the University Drive Division was an acute-care hospital, not a long-term home. Cowgill, in response to a question about whether a patient with Kenneth’s specific needs could be kept at the facility, replied by e-mail, saying, “We cannot speculate on this because each patient’s care needs are different, and how best to provide care to each individual veteran is determined by the clinical team.”

Kenneth and his siblings are not the only area families who are dealing with this situation. About five times a month, said WVU Hospitals spokesman Bill Case, social workers at his facility seek a placement for a patient on a ventilator.

“It’s not an uncommon problem,” he said.

When the circumstance arises, the hospital works with the patient, their family members and insurer to find a facility, Case said.

“Sometimes our care management office makes contact with 10 to 15 institutions in different states to find the right placement and the closest placement, and it’s often a struggle,” Case said. “I think a lot of the families and patients would be happier if the care could be closer to home.”

One of the main variables is how much the insurer will pay, “and whether or not it’s enough to give the nursing home the incentive to open one of their very expensive beds and staff,” Case said. “That’s the battle that goes on every day.”

In Kenneth Black’s case, the nursing home not only has to be able to provide for a patient on a ventilator and be able to offer on-site dialysis, but also have a contract with the VA hospital system.

Stan Frum, chief of public affairs and community services of the Louis A. Johnson VA Medical Center, declined to give much detail about what was being done to find Kenneth Black a placement or the reasons why finding one were difficult. Cynthia Black, who holds her brother’s power of attorney, signed a statement granting permission for Kenneth’s situation to be discussed.

“There have been contacts made at numerous locations all over the country about his condition,” Frum said before the Pittsburgh placement was found.

Frum also provided a doctor to discuss the difficulty in placing a patient on a ventilator, but only in generalities.

“We do have the ability to take care of patients on a vent,” said Dr. Glenn Snider, the Clarksburg hospital’s chief of staff. “Patients who are stable and need chronic vent care are placed in units designed for that. We are an acute-care hospital, and we take care of acute care needs.”

Also, Marcus Wilson, spokesman for the Washington regional offices of public affairs for the Department of Veterans Affairs, was unable to provide any information on how many veterans have ALS or require ventilator care like Kenneth Black.

Kenneth Black served in the U.S. Army in Vietnam for a year in around 1963, Cynthia noted. When he returned, he worked for the Owens-Illinois glass plant, and later, for the Alcan aluminum plant.

In 2003, he started losing his balance, falling and not being able to get up, Cynthia said. He lost the use of his right arm, and then his left arm.

“And then he started losing the use of his legs and was not able to stand up,” Cynthia said.

Kenneth took early retirement because of his health problems, and in 2004, he was diagnosed with ALS.

Once someone has been diagnosed with ALS, said Michael Bernarding, the executive director of the Western Pennsylvania/West Virginia chapter of the ALS Association (www.alsa.org), that person’s life expectancy is about two to five years, he said.

Through Cynthia, Kenneth noted that he had hoped after retirement to set out on the open road and see the country.

“He planned on traveling,” Cynthia said. “Whichever way the car would go, that’s where he was going. He was going to take his time and see the different states.”

Now she worries that his inability to find a nursing home that can take care of his needs will not allow the family to maximize the time he has left.

“There are a lot of veterans on dialysis. They should be able to take patients on dialysis. The VA has no place to take a vented patient. He’s a patient on a vent, and he has to have dialysis,” she said. “I just feel that if you are a hospital, you should be able to accommodate these patients.”

E-mail Mary Wade Burnside at mwburnside@timeswv.com.



Vets may have higher risk for ALS

Studies suggest a 50 percent increase in disease occurrence

Not much more is known about what causes amyotrophic lateral sclerosis (ALS) than when Yankee first baseman Lou Gehrig was diagnosed in 1939 with the disease that eventually would become almost synonymous with his name.

However, researchers have discovered that although there can be a genetic cause for the condition, more often, patients have what can be called “sporadic ALS.”

“And we don’t know the cause of it,” said Michael Bernarding, executive director of the Western Pennsylvania/West Virginia chapter of the ALS Association (www.alsa.org). “That’s what’s most frustrating about ALS. We don’t have a treatment or a cure. We don’t even know what causes it or have a good idea of what causes it, so we don’t know how to prevent it.”

However, the ALS Association does believe that those serving in the military — any branch, combat or non-combat — have a 50-percent higher chance of developing the disease than someone who has not.

“Why is not known,” Bernarding said. “That’s why we’ve been advocating in Washington, D.C., for increased awareness at the Department of Defense and the Department of Veterans Affairs, so we can increase the research dollars and look into it further.”

Marcus Wilson, spokesman for the Washington regional offices of public affairs for the Department of Veterans Affairs, was unable to provide any information about veterans and ALS or coordinate an interview with someone who could.

The ALS Association has published what it calls the White Paper on its Web site, detailing that whether military personnel have served in conflicts from World War II, Korea, Vietnam and the Persian Gulf War, or even in a non-combat situation, “existing evidence supports the conclusion that people who have served in the military are at a greater risk for developing ALS.”

After the Persian Gulf War, the phenomenon became apparent, Bernarding said.

“Then they kept looking further and further,” he said. “They thought it must be some environmental factor that people in the military are exposed to.”

According to the White Paper, two separate studies were conducted to look into reports that ALS was occurring in Gulf War veterans at an “unexpected rate, particularly in young veterans who were not yet of the age at which ALS is more common.”

The first study was led by Ronnie D. Horner, Ph.D, of the National Institute of Neurological Disorders and Stroke at the National Institutes of Health, and was funded by both the Departments of Defense and Veterans Affairs.

After examining 2.5 million military personnel, the researchers concluded that the Gulf War veterans were twice as likely as the non-military population to develop ALS.

That study was published in the Sept. 23, 2003, edition of Neurology, as was another one done by Dr. Robert Haley of the University of Texas Southwestern Medical Center at Dallas, that essentially reached the same conclusion.

Two years later, a study published in the same periodical extended these results to all men with any history of military service in the last century, although the number was increased to having a 60-percent greater risk of developing ALS than the general population.

That study was conducted by epidemiologists at Harvard University’s School of Public Health.

In addition to pushing for further research, the ALS Association performs other services, including helping people with the disease get devices that can help them communicate.

“They just need to get in touch with the association and work with a nurse and get registered, and we can start providing them with services and resources,” Bernarding said.

E-mail Mary Wade Burnside at mwburnside@timeswv.com.



W.Va. has few long-term vent beds

For nearly three years after Kenneth Black’s diagnosis of amyotrophic lateral sclerosis (ALS), he was able to live at home in Grant Town under the care of his sister, Cynthia.

But after he was admitted to Ruby Memorial Hospital in February with pneumonia, he was put on a permanent ventilator to help him breathe.

Also, medicine caused his kidneys to shut down, Cynthia said, so her brother now requires dialysis treatments three times a week.

This turn of events dramatically reduced Kenneth Black’s placement options in a long-term nursing facility.

Even though Black needs dialysis and also only can go to either a veterans’ facility or one with a contract with the Veterans Administration, which limits his options, just needing a long-term ventilator bed seems to be a certain ticket out of West Virginia.

The state has few if no long-term ventilator beds for patients because the cost of setting them up, staffing them and maintaining them costs so much money.

Jesse Samples, the CEO of the West Virginia Health Care Association, a trade association that represents nursing homes, did not have numbers for how much it would cost to operate a ventilator bed in West Virginia.

In Maryland, however, the Medicaid reimbursement rate for a vent patient in a nursing home is $543.99, and for Medicare, the figure is $586.99, according to Alison Delsite Everett, spokeswoman for the Pennsylvania Health Care Association.

The costs can vary from state to state, in part because of staffing costs, which can differ because of minimum wage requirements and cost of living that are factored into the number.

“I don’t not have Pennsylvania numbers, but that should give a ballpark number,” Everett said.

Two moratoriums passed by the West Virginia Legislature, beginning in the 1980s, reduced or eliminated long-term ventilator beds.

The first one prohibited more nursing home beds to be dedicated to ventilator service, said Marianne Kapinos, general counsel for the West Virginia Health Care Authority. The second law mandated that there should not be any more long-term ventilator service unless it could be shown that no cost was added to the state, she said.

Joe Bourne, president of Respiratory Health Services, based in Towson, Md., provides ventilator service to nursing homes up and down the Eastern coast, but not West Virginia.

Both Kapinos and Bourne noted that the low reimbursement rate in West Virginia essentially has eliminated long-term ventilator beds in the state.

“Maryland has a very strong reimbursement rate,” said Bourne, who has an office in Oak Hill in Fayette County for other respiratory services. “Virginia and Pennsylvania are not as good as Maryland, but both are adequate.”

West Virginia patients who need long-term ventilator beds tend to go to these surrounding states, Bourne said.

When additional services such as dialysis are added, the patient might have to go further.

“Dialysis creates issues,” he said. “If you don’t have dialysis on-site, the transportation costs to send someone out three times a week makes the patient a difficult patient” to treat, Bourne said.

Bourne said he has seen situations in which a patient from the Beckley-Oak Hill area would have to go to Pittsburgh to be placed in a nursing home with ventilator service, with family members then having to make a long trip to see the patient.

“It becomes an extensive, entire-day option to go see your family member,” he said. “It’s an unbelievable situation.”

E-mail Mary Wade Burnside at mwburnside@timeswv.com.

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