Every Thursday morning at 8:30, six or more health care professionals squeeze around a small table in a corner conference room at the MDA/ALS Neuromuscular Research Center in Phoenix. Since their patients will begin to arrive at 9 a.m., this half-hour promises to be the quietest part of an otherwise hectic day.
|(From left) Respiratory therapist Marilyn Graham, speech-language pathologist Pamela Mathy and physical therapist Deborah Taylor wait while Kumaraswamy Sivakumar, director of the MDA/ALS Neuromuscular Research Center in Phoenix, examines Rita Yorke.
|Speech therapist Pamela Mathy (right) evaluates Rita Yorke while intern Meri Bickell observes.
On the table is a pile of manila file folders — some thin and shiny, others frayed around the edges and thick enough to resemble telephone directories.
This meeting reveals the essence of MDA's multidisciplinary team approach to treating ALS — one followed at each of the Association's 25 ALS research and clinical centers across the country.
Not 'just' patients, but people
The MDA/ALS Center in Phoenix, located at St. Joseph's Hospital, is home to approximately 160 manila folders, each representing a resident of central or northern Arizona who has ALS.
But to center director Kumaraswamy Sivakumar and his team, each folder represents much more than just another medical chart. It represents a human being — often frightened, usually with a family — who faces both an uncertain future and a life-or-death battle against an unbeaten opponent.
"This is a group of patients whose disease does not get better, and they are left with enormous physical, psychological and social difficulties," Sivakumar, a neurologist, explains. "And there is an enormous amount of stress at home because of the fact that this is a fatal illness."
Concerns about stress are as much a driving force behind Sivakumar's team approach to treating ALS as are the medical and scientific benefits.
"I give the prognosis in a staged fashion," Sivakumar says. "I do not say that it is a fatal illness in the first visit."
Sivakumar also notes that ALS progresses at different speeds for different people, making it impossible to make an accurate prognosis until well after that first visit.
Pamela Mathy, a clinical professor of speech and language pathology at nearby Arizona State University in Tempe, is the speech and language pathologist on Sivakumar's team. Mathy explains, "Some patients approach a diagnosis of ALS by demanding all of the information available, while others need to be introduced to the prognosis more carefully."
Mathy says that, when she assesses the status of someone's respiratory and swallowing functions, "sometimes the patients actually resent my being there, because they don't feel they're having problems in these areas yet. Over the years I've learned not to take that personally. I have to just be here when the patient is ready to need me."
The starting lineup
|Dietitian Irene Hovey is an important team member.
At the Phoenix center, patients are seen every three months to have their progress measured by each member of Sivakumar's team.
To make this work smoothly, the Phoenix team uses a system of color-coded lights mounted on a panel outside each examination room. Each position on the team is assigned a color, and each light switch has three positions: off, on and blinking. A blinking red light, for example, means the patient is ready to be seen by Dr. Sivakumar. If the red light is on steadily, Sivakumar is in the room and shouldn't be disturbed. And if the red light is off, then Sivakumar has probably already been there and gone.
Blue lights signal speech and swallowing therapists; yellow lights are for respiratory therapists; white lights indicate physical and occupational therapists; green lights are for research fellows, hospital residents and genetics counselors; and the clear lights belong to the team's social worker.
Besides regular team members, the center can refer patients to specialists at St. Joseph's, such as a pulmonologist, cardiologist or gastroenterologist, if their expertise is needed for management of the person's ALS.
Documentation and communication
During each visit, team members enter their findings using flow sheets designed by Sivakumar. Each flow sheet documents up to six clinic visits, allowing each team member to see at a glance the progression of the disease in a given person.
"Based on that flow sheet we can decide on what interventions are necessary and what issues have been discussed with the patient," Sivakumar explains.
The flow sheet uses the standardized ALS Functional Rating Scale, with ratings from 0 to 4, designed to save time and paperwork while allowing the center to feed accurate data into different research studies on clinical care.
For example, when Mathy evaluates the patient's progress in terms of speech, saliva control and swallowing, a score of 4 in the area of speech indicates normal speech processes, while a 0 means the patient has lost all useful speech.
By comparing the scores for the most recent visit with those from the initial diagnosis, Mathy can consider whether it's time for such medical interventions as a PEG tube for nourishment or respiratory assistance.
Mathy also refers to the flow sheet to determine the person's level of knowledge of these interventions, using a similar scale.
Each patient's chart contains several flow sheets: Mathy's speech, swallowing and nutrition evaluation; the motor neuron disease evaluation form used by Sivakumar; and flow sheets to document psychosocial management, respiratory therapy, and physical and occupational therapy.
"We always have notes," Sivakumar says. "But what exactly was done from visit to visit can be difficult to put together. That's why I developed the flow sheets, which are easier to follow."
Simplifying the documentation process cuts down on the time team members spend doing paperwork. The team approach also helps patients conserve precious energy.
"I think it's great," says Carol Vincent, who received her ALS diagnosis in October 1999. "It takes a while to do everything, but it sure beats having to go from place to place — especially in the summer when it gets so hot around here."
Rita Yorke, a retired administrator for the state of Arizona, says she actually looks forward to going to the clinic, accompanied by her son, Don Pollard.
|Deborah Taylor is a physical therapist.
"We know we are going to spend most of the morning here," she says. "So we usually make plans for lunch and then we go to a movie or something afterwards — make a day of it."
Yorke, who received her diagnosis in November 1999, started going to the MDA/ALS Center about a year ago when her health insurance changed.
"I've been very happy with the way everyone on the team treats me," she says.
To Yorke, the team approach is more than just a matter of convenience.
"The biggest difference is that each person who sees you is more in tune with the bigger picture of your life," she says. "You don't get that when you have to go from here to there to see different doctors and therapists."
Yorke also appreciates the work done by MDA. "They help so much, just by taking care of all the insurance stuff. All I have to do is show up, really, and they figure out where I am, what I need and how to go about getting it."
Insurance and the team approach
One of the key players on Sivakumar's team is office manager Sue Wilson, who has the unenviable task of trying to "sell" the logic of the team approach to a number of health insurance companies. And the center deals with almost as many different companies as there are patients.
Wilson sees herself as a translator of sorts, helping to bridge the communication gap between people who speak and understand medical-ese or bureaucrat-ese, and the language of human beings who live with ALS on an everyday basis.
A key element of Wilson's strategy is to invite health care providers and insurance company representatives to see the team approach firsthand.
"I try to get blanket authorizations for the whole team, but some companies won't support that," she says. "I just think they need to be made aware of the real impact that their decisions have on families. I once had a rep from a company tell me that he couldn't come because he couldn't let himself become emotionally involved."
Probably not the smartest thing to say to a woman who's spent 35 years battling health insurance companies on behalf of doctors and their patients.
"That was one of the few times when I really lost it," she recalls. "I said, 'Oh no you don't. You are not going to just sit in an office and not be touched by what I have to show you.'"
Wilson sees the team approach as a return to the days when health care was more personal, albeit less technologically advanced.
Meanwhile back at the clinic
Among Sivakumar's patients, the consensus is clear: The multidisciplinary approach to ALS treatment works well.
One woman, who doesn't speak English, expressed her appreciation of Sivakumar and his team with a pack of homemade flour tortillas.
|Respiratory therapist Graham measures Yorke's respiration.
"Now I'm being paid in kind," he quips.
Clearly, one of the keys to the center's success is Sivakumar's intense desire to treat patients — not just their disease. And the director's philosophy is evident in each team member's attitude.
"Based on the disabilities caused by ALS, we tried to develop [team members] who are interested in the disease," Sivakumar explains. "We are also trying to develop a standard for care — how we would assess people, how and when to intervene — using nationally accepted standards.
"Obviously there is no cure," Sivakumar acknowledges. "But we're trying to design and implement supportive measures which will help people at least partially overcome the disabilities, while we await advances in curative therapy."