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The Long-Term Challenges of Advanced MS

2008; Elsevier BV; Volume: 9; Issue: 9 Linguagem: Inglês

10.1016/s1526-4114(08)60235-8

2377-066X

CHRISTINE KILGORE,

Multiple Sclerosis Research Studies

Christine Kilgore is a freelance writer for Elsevier Global Medical News. People coping with a diagnosis of multiple sclerosis (MS) often express two fears, said Dorothy Northrop, MSW, ACSW, a vice president of the National Multiple Sclerosis Society. One is that “they'll end up in a wheelchair.” The other is that “they'll end up in a nursing home with 80- and 90-year-olds,” she said. In reality, only 5%-10% of the estimated 400,000-500,000 MS patients in the United States need chronic nursing home care. When these patients arrive at the doorstep of long-term care, however, they are typically in the middle of their lives—average age, mid to late 50s—and are more alert and self-directed than older residents. Yet these relative youngsters have more frustration, depression, and physical dependence. Some require total care. “Multiple sclerosis is a chronic disease, but [when advanced] has the needs of an acute disease,” said Ann Kelly, RN, director of nursing at North Star Community in Denver, which is home to more than 20 adults with MS. Still, “what we really want to focus on is the quality of each day.” While few studies specifically address the long-term care of individuals with advanced MS, leaders from facilities that have communities of MS residents—as well as staff from facilities with even a few MS patients—told CARING FOR THE AGES that experience is building on how traditional long-term care must be modified to effectively care for residents with this disease. At the crux of good care, they all said, is an understanding by the staff of how MS is a neuroimmunologic disease with various and continually changing symptoms: from sensory and cognitive impairments to bowel and bladder dysfunction, swallowing problems, spasticity, tremor, and partial or complete paralysis. Fluctuating symptoms make it difficult to know what a resident's day will be like. Most patients with advanced MS, moreover, experience fatigue from the disease itself, which compounds normal neuromuscular or depression-related fatigue. An MS resident who can brush his or her teeth in the morning may simply be too fatigued to do so in the afternoon. “If you don't understand that the fatigue is a clinical problem—a real clinical factor—it can sometimes seem like there's willful refusal to cooperate,” said Marcia Brenowitz, NHA, administrator of the North Star Community. Awareness of the cognitive change that many residents with MS experience is also important, Ms. Brenowitz and others emphasized. While 90% of MS residents will retain their intellect, alertness, and language skills, many will have impairments in memory, information processing, attention, concentration, and judgment. “When a resident says, for instance, that [the aides] ‘didn't help me wash my hair,’ it may have happened, but it may not have,” said Ms. Kelly. “You have to realize that [their cognitive abilities] can be erratic.” Disease progression also is unpredictable. “Some people don't get any worse [after entering nursing homes] but stay exactly the same for long periods of time … and others come in and the progression of their disease is rapid and relentless,” said James Mahoney, MD, medical director at the Boston Home, a specialized facility for patients with advanced MS and other progressive neurological diseases. One of the Boston Home residents has been there since 1974 with MS, which reflects the fact that most MS patients live normal life spans. Ms. Kelly's sister, on the other hand, died just 10 years after her diagnosis. Dr. Mahoney said that “there's no good explanation” for the variation in longevity among MS patients. Most nursing home residents with MS, he said, have “secondary progressive” disease, which means they follow a steadily worsening course after having a “relapsing remitting” disease course with clearly defined remissions and acute worsening of neurologic function. Their new disease course can progress with or without occasional flare-ups and minor recoveries. Diagnosis of the disease, which is believed to result from an autoimmune assault on myelin, is established primarily by patient history and neurologic examination. Magnetic resonance imaging—and sometimes electrodiagnostic procedures, lumbar puncture, or CAT scanning—is used for definitive diagnosis. Evidence of scarring (plaques in areas where myelin has been destroyed) in at least two areas of the central nervous system, as well as evidence that the plaques occurred at different points in time, is important. By the time most MS patients enter a nursing home, they have undergone years of treatment with drugs that can reduce the frequency and severity of exacerbations, the accumulation of lesions, and the rate of symptoms’ progression. These “disease-modifying” or “immunomodulating” drugs—Avonex, Betaseron, and Rebif, for example—are injected subcutaneously or intramuscularly from once every day to once a week. Some nursing home residents continue taking these drugs—something for all staff to be aware of because patients are often sore and tired afterward. Staff must also presume that residents with MS have osteoporosis and are at particularly high risk for pathologic fractures, because most have been treated repeatedly with steroids during disease relapses. As the number of younger residents with MS at Northwestern Healthcare Center in Berea, Ohio, increased in recent years, leaders and staff made several changes. First, they increased the number of certified nursing assistants, because almost all of the center's patients needed Hoyer transfers and a significant amount of assistance with bathing and eating. But the facility also brought in a neuropsychologist and a physiatrist to offer new approaches to pain management and therapy. Northwestern grew its restorative nursing program to enable patients to maintain their functional levels and appointed a wound care-certified nurse as the assistant director of nursing. Regular resident discussion groups were created to address physical and mental aspects of the disease process as well as life at the facility. “It's all aimed at providing a holistic approach, from meeting their medical and psychological needs to their spiritual and dietary needs,” said Dan Storey, NHA, administrator of the facility, which now cares for about 90 residents with MS. Resources and the ability to make such changes will vary among nursing homes, but the constant, sources said, should be an understanding of the disease and care that is attuned both to the major threats to MS residents’ lives—aspiration pneumonia and urinary tract infection—and to MS residents’ life experiences and needs. “MS residents will tell you, ‘We did not arrive to sit and reflect on a life well lived.’ They'll tell you ‘I'm living my life right now, and if I don't die of pneumonia or a UTI or I don't choke, this may be my life for another 20 years,’” said Brenowitz. “They need to build new relationships, and they're all seeking a sense of belonging.” Good care of MS residents is uniquely multifaceted, according to nursing home leaders and staff who spoke with CARING FOR THE AGES. They emphasized the following points, which include recommendations to nursing homes from the National Multiple Sclerosis Society: ▸ Management of spasticity and tremor. Stretching programs help but must be slow and deliberate. Some patients also benefit from baclofen, diazepam, botulinum toxin injections, and intrathecal baclofen delivered by an implantable pump. Weighting, immobilization, and patterning can relieve tremor. ▸ Restorative therapy. Physical and occupational therapy are important, but so is a daily restorative-therapy program. “These residents need to maintain any function they have,” said Jane Mickol, a restorative aide at Northwestern Healthcare Center. Ms. Mickol, who herself has MS, often schedules 15-minute sessions. ▸ Management of fatigue. Therapies, activities, and meals should be interspersed with rest periods. Pharmacologic agents such as amantadine, fluoxetine, methylphenidate, and the narcolepsy drug modafinil can help. ▸ Infection control. Urinary tract infections and aspiration pneumonia—two of the largest causes of death in MS residents—need rapid responses, said Thomas Brislin, DO, medical director of the Good Shepherd Homes in Allentown and Bethlehem, Pa. ▸ Management of bowel and bladder dysfunction. MS can slow the bowel and weaken abdominal muscles. A bowel program can include enemas, laxatives, and oral stimulants. Bladder dysfunction can occur in the detrusor (it can be hyperactive or hypoactive), the external sphincter, or the coordination of those muscles. When an indwelling catheter is used, a suprapubic tube should be considered. ▸ Skin management. The immobility, numbness, incontinence, and spasticity common in MS demand vigilant skin checks and pressure ulcer prevention. ▸ Managing dysphagia. Abnormal swallowing and risk of choking are common. Temporary use of a feeding tube is often appropriate. ▸ Facility changes and equipment. Air conditioning is imperative because heat aggravates symptoms in about 80% of MS residents. Other cooling strategies can help. Most residents eventually need power chairs and the space to use them. Chapters of the National Multiple Sclerosis Society can offer help in securing chairs, computers (for stimulation), and other items. Vision problems are common, so large-print books, contrasting colors on door frames, and other accommodations are helpful. ▸ Activity planning. Experts said that relatively young MS residents want cultural experiences, continuous learning, opportunities to enjoy new traditions and celebrations, and work experiences. “They want recreation, socialization, cultural enrichment, and fun,” said Gerry Albers, a certified recreational therapist at Carillon Nursing Home in Long Island, N.Y. Chapters of the National Multiple Sclerosis Society can help, including with a 17-minute training video for aides titled “Providing Quality Care to People with MS,” available through www.nationalMSsociety.org.