ALS Case Manager Touches the Lives of Many

by Kathy Wechsler on Tue, 2005-02-01 17:00
Patricia O'Connor enjoys getting to know the people with ALS and their families / Photos by Erin Lubin

A registered nurse with a bachelor’s degree from the City College of New York, Patricia O’Connor is the nurse case manager for the Forbes Norris MDA/ALS Research Center’s multidisciplinary clinic at California Pacific Medical Center in San Francisco. O’Connor has been at the ALS center for eight years. With a background in rehabilitation and case management, O’Connor gained much of her valuable rehabilitation experience working at the Boston Center for Independent Living.

Her many hats

As nurse case manager, a role that exists in only the largest of MDA/ALS centers, O’Connor sees almost all people with ALS and coordinates referrals for any treatment or equipment needed after they leave the center. Involved with the people with ALS at every stage of their postdiagnosis lives, she also deals closely with family members and keeps in contact after their loved ones have died. Living with ALS is expensive, and O’Connor often goes to battle with insurance companies to make sure they cover the costs involved.

"It’s making sure that when I recommend that the patient get a feeding tube that the patient gets the feeding tube, that the patient gets the supplies that they need for the feeding tube and that also they can get the home care to do the teaching that they need to make the feeding tube work," O’Connor says.

People with ALS often contact O’Connor with problems or concerns between visits. But she also shares her knowledge of ALS at educational meetings put on by home health care professionals, where she can answer questions about the specific problems faced by people with ALS and what they mean for health care agencies.

Teaming up

Working directly with the physicians, O’Connor facilitates the therapists and directs them as to the patients’ needs while visiting the clinic. She also answers therapists’ questions about nursing and transportation issues, getting patients into clinic and insurance coverage.

"The speech language pathologist and a respiratory therapist don’t necessarily know all that much about each other’s disciplines, whereas a nurse generally knows about both of those disciplines and can answer questions," she says. "What I’m doing a lot of times is smoothing out the edges between specific disciplines."

A few of her favorite things

Ask O’Connor what she likes best about her job.

"I love my patients," she says. "They are an incredibly brave, feisty group of people."

Patricia O'Connor and Karen Jorgensen
Nurse manager Patricia O'Connor (inset) plants a kiss on Karen Jorgensen at the Forbes Norris MDA/ALS Research Center in San Francisco. Photos by Erin Lubin

Her love drove her to join two of her colleagues at the Forbes Norris MDA/ALS Research Center, Robert G. Miller, the medical director, and Deborah Gelinas, the director of ALS clinical services, as co-author of the recently published Amyotrophic Lateral Sclerosis.

Geared toward people newly diagnosed and published by the American Academy of Neurology, the book focuses on specific issues faced by people with ALS, such as when to get a wheelchair or BiPAP, and explains that these devices can make the difference between staying home and getting out and enjoying life.

In their corner

Aside from giving medical advice and answering questions about ALS, O’Connor helps people with ALS decide how they want to live with the disease and how aggressively they want to fight it. She presents all of the options for new treatments and equipment, discusses advantages and disadvantages of each, and helps people manage any side effects or drawbacks of the treatment.

This responsibility gives O’Connor a chance to visit with people with ALS and their families and to mediate if there are differences of opinion among family members. Her role in these meetings is to get family members to communicate openly with one another while still acknowledging that the decision belongs to the patient.

"Often it’s just a matter of people saying, ‘I know that’s how you feel, but I need you to hear how I feel about it,’ so that everybody can just be more sensitive to everybody’s needs," O’Connor says. "That’s what I love about my job."

Kathy Wechsler
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