ŠKansas City Nursing News 2005
By:Lisa Waterman Gray
January 26, 2005
North Kansas City Hospital recently developed a multidisciplinary approach to treating patients with amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig 's disease) as part of its NorthCare Hospice program.
Hospice was already receiving many referrals of ALS patients from other hospitals, the ALS Society and the Muscular Dystrophy Association when the need for a program of individualized ALS care became apparent.
"The ALS center for medical treatment is at The University of Kansas Hospital," said Jan Jester, RN, and nurse case manager. "So they started making referrals to us for hospice care. We also sometimes get a direct family referral.
"We've worked with ALS patients on a more formalized basis in the last year and a half. We needed (to determine) what we could do better to meet our ALS patients' needs. We also coordinate with the ALS office to minimize overlap of services and learn more about our patients."
ALS occurs when nerve cells in the brain and spinal cord, which control the muscles, no longer exert their normal level of control over voluntary muscle movements. Approximately 10 percent of ALS cases clearly have a genetic origination.
In the early stages, ALS presents as generalized weakness and wasting of the muscles. Cramps and muscle twitches are also common. ALS first affects the legs, arms and/or throat and mouth. As the disease progresses, it ultimately affects all voluntary muscles and eventually leads to paralysis. ALS typically has a rapid progression, with a three- to five-year average survival rate, following diagnosis.
"Hospice - for any patient - is about making the most out of your life in the time you have," said Amy Arst, RN, and community liaison. "It's not about dying.
"ALS patients are kind of a neglected group whose needs are very different from those patients with COPD or cancer. ALS is also, relatively, a young person's disease, with the average age (of onset) of 36 years to 50 years."
The formalized ALS program began with education meetings for NorthCare Hospice's own staff. Program ideas came from both staff members and some of the more verbal ALS patients.
Ten to 12 ALS patients currently participate in the program. Three to four nurses see them an average of twice a week. A bath aide visits two to three times per week, and a chaplain and a social worker each visit once or twice a month. The number of visits increases as needed.
"Every patient is different and you can't predict how an individual (disease) progression will actually occur," Arst said. "One of my patients was diagnosed and died within six months."
"And I have a patient that has lived with this for 12 years," Jester said. "She has a wonderful attitude and her husband gives her total care with the help of a daughter who lives at home - morning and night - and with our help.
"I also have a patient with almost no voicing. She broke her pelvis and typed out, 'I might be going downhill but I'm not giving up.'"
The ALS program offers services to family members of these patients as well. Many children lose their parents to this disease. The bereavement program often works with these children and maintains contact with each family for one year, following a death.
"These patients are very special people," Arst said. "With this disease you really see the spirit coming through this wilted body. We go home, after working with these patients, and we don't worry about the spilled milk on the floor.
"You have a greater appreciation for life, and wonder, 'What is my mission in life?' because you see their struggle."