Several MDA/ALS centers include nurse practitioners (NPs) as part of a health care team. They’re registered nurses with advanced degrees and training who manage their patients’ ongoing care once they receive a diagnosis of ALS from the neurologist.
NPs execute the care of patients in a variety of ways. It depends on how the practice is run and the NP rules and regulations of the state.
Johns Hopkins University
For example, once patients receive a diagnosis of ALS at the MDA/ALS Center at Johns Hopkins University in Baltimore, they’re referred to Lora Clawson, who’s been an NP there for seven years, to manage their ongoing clinical care. Clawson consults with the physicians but sees patients after they’ve seen the neurologist or primary care physician. They can also choose to see only Clawson.
“I tell patients, ‘I’m not here to replace your physician. I’m here to augment your physician,’” she says.
|NP Rebecca Molczan monitors the lung function of George Michell as he performs a forced vital capacity test.
As an NP, Clawson helps patients who’ve recently received an ALS diagnosis to understand the disease. She builds hope by discussing clinical trials, multidisciplinary care and resources, and is available by telephone if patients have questions or concerns. She writes prescriptions for medication and orders for X-rays, interprets laboratory results, helps patients get the equipment they need and refers them to outside individuals and agencies.
In the multidisciplinary ALS clinic, Clawson coordinates with other members of the health care team, including the physical and occupational therapists, nutritionist, pulmonologist, gastroenterologist, orthotist and the durable medical equipment vendor.
“I love taking care of patients,” says Clawson, who’s also an assistant professor in the School of Medicine and a clinical instructor in the School of Nursing at Johns Hopkins. “That’s why I got into nursing many years ago and why I choose to stay in nursing today.”
Massachusetts General Hospital
By contrast, Matt Bellanich, an NP at the MDA/ALS Center at Massachusetts General Hospital in Boston, shares ALS patients with the physician. Patients alternate visits with the neurologist and Bellanich in addition to visits with other clinicians such as the physical therapist, speech pathologist and respiratory therapist.
Besides helping patients with both nursing and medical issues, Bellanich is involved in a number of clinical trials, writing the protocols to ensure involved patients will be safe during the trials. He also does a lot of e-mailing and phone communication with patients and their family members.
“I really encourage patients and family members to call me if they have a concern or they have a worry, if they have a problem,” says Bellanich, who’s been an NP for 20 years, two of which have been working with ALS patients. “I don’t want them sitting on it and not contacting us and just getting anxious when maybe there’s a pretty easy solution. If it’s a more complex issue, then the patient needs to be seen sooner.”
Bellanich also sees patients in their homes, because as the disease progresses, it sometimes becomes difficult for patients to come to the clinic. Seeing patients at home allows him to evaluate them medically as well as to deal with their ongoing nursing and social issues in the home setting. When patients are in hospice care, Bellanich acts as a consultant to the hospice nurses. He also travels to groups involved with home care and hospices and helps them better understand ALS and how symptoms are treated.
University of Pittsburgh Medical Center
Rebecca Molczan, who works as an NP at the MDA/ALS Center at the University of Pittsburgh Medical Center, serves as the clinic coordinator and sees new patients with the neurologist.
“My role is that after [the neurologist and patient] determine a plan, I make sure that the plan is followed up,” says Molczan, who’s coordinataed the MDA clinic since 1991 and has been an NP for six years. “For example, if any outside testing is needed, I make sure that those things are done and follow up with the patients with results and do any outside referrals that are necessary.”
There to answer any questions, both during and between visits, Molczan cites patient education as a large part of her job. While providing support, she educates patients and their families about the disease process and things they can do to improve their quality of life.
During clinic visits, Molczan evaluates patients’ respiratory function. She also assists in research projects involving ALS patients and serves on the data safety management board.
The personal touch
Matt Bellanich says that because of NPs’ backgrounds in nursing, patients choose to go to them in many different settings.
“It’s a little bit different style of medical care in that I think nurses are a little more based in the social sciences, in family dynamics and the care aspect of taking care of an ALS patient,” says Clawson. “A lot of times some specialists, in particular physicians, sometimes approach disease from a little bit more of a technical, diagnostic or procedure-oriented orientation.”
Patients value their relationships with NPs because they trust them. When seeing an NP, the relationship is about the patient — not just the disease. NPs try to integrate patients’ health problems with other issues involved in living with ALS.
“I think that the aspect of really looking at the entire individual is critical, and that’s what I enjoy best about doing what I do,” says Bellanich.