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Dome - No Place Like Home
Dome May 2014
No Place Like Home
Date: May 1, 2014
Mimi McVey listens as Joan Cohen asks a question about her medication infusion pump. Cohen’s bathroom is stocked with materials from Johns Hopkins Home Care.
Once upon a time, Mimi McVey made rounds on a busy oncology unit and tended to her patients whenever they buzzed. But for the past 17 years, she’s been the one ringing bells. McVey is among a group of highly trained Johns Hopkins infusion nurses who regularly visit patients to administer drugs that keep them well and out of the hospital. And for more than a decade, she’s made weekly visits to check on Joan Cohen.
In the comfort of Cohen’s brightly decorated high-rise overlooking Baltimore City, McVey assesses her patient, changes her dressing and connects her to a bag of intravenous hydration with electrolytes. Since she was a young adult, Cohen has battled a malabsorption disorder—she can’t absorb nutrients properly—which requires infusions five days a week. She has also lost much of her vision. But medical problems don’t stop the 64-year-old patron of the arts from going out to eat, to museums and to the symphony, and from spending time with her husband and two nephews.
Cohen feels grateful to receive her care at home, where she complies with her physicians’ orders under McVey’s watchful eye. During those interactions, the small talk one might expect between caregiver and patient has evolved into lively discussions about common interests: cooking, restaurant experiences, social activism and family.
Cohen represents the growing population of home care patients—roughly 12 million this year, according to the National Association for Home Care & Hospice. As Americans live longer with chronic illnesses, and with the push to keep people out of the hospital to meet cost-saving initiatives required by the Patient Protection and Affordable Care Act, the demand for home care services grows ever greater. The population of older Americans aged 65 and over, for instance, is expected to reach roughly 80 million by 2040, according to the U.S. Census Bureau.
A Burgeoning Specialty
Not all home care nurses can take care of patients who need regular intravenous therapy for such conditions as heart disease, cystic fibrosis, bacterial infections and cancer. Infusion nurses are trained to administer many types of IV treatments, including chemotherapy drugs, enteral nutrition administered through a feeding tube, cardiac medicines and a host of antibiotics. These RNs also insert and monitor catheters and draw blood, staying alert to anything unusual, such as a budding rash or complaints of new symptoms.
Johns Hopkins Home Infusion Services is among a handful of infusion companies in the nation connected to an academic health care system, says David Hirsch, nurse manager of adult home infusion. In the past five years, the infusion nursing staff has more than doubled, to 31, and its geographic reach extends to southern Maryland, Virginia, Washington, D.C., and parts of Pennsylvania.
Managing infusion care comes naturally to McVey, who began her career overseeing complex chemotherapy regimens on a bone marrow transplant and oncology unit. She says she left hospital work because, as a floor nurse, she felt frustrated that so many patients needed her at one time. “Home care allows you to give undivided attention to patients and their needs,” she says.
The Baltimore County resident finds instructing patients and family members about care the most gratifying part of her job. Years ago, McVey taught Cohen and her husband, Sam, how to keep Cohen’s central venous catheter sterile, how to flush it when the daily five-hour infusion is done and how to adjust the medication pump if the alarm goes off. However, McVey’s radar is always attuned to subtle physical changes that could signal a downturn in her patient’s health.
One day, for instance, McVey noticed that the skin around Cohen’s central line was inflamed. So she called Cohen’s home infusion pharmacist and internist, and together they decided to try a different dressing and antibiotic treatment.
Nurse and patient also discuss other kinds of adjustments. Recently, in the small bathroom where Cohen keeps her medical supplies, McVey began changing the dressing on Cohen’s central line, the long, flexible tube implanted in her upper chest wall to infuse medication and draw blood. Suddenly, Cohen stopped her.
“Listen, we need to talk about this dressing,” she said. “With summer coming, I don’t want it to show when I wear my tank tops. Can you move it?”
Together they discussed ways that the catheter could be repositioned so that it might be less visible yet still secure and sterile under the dressing.
A Network of Support and Teamwork
Like most home care nurses, McVey relies on a chain of experts to support her efforts. Each infusion patient is assigned a home care team consisting of a nurse, pharmacist and clinical pharmacy technician. All work closely with the patient’s physician(s) to coordinate care. Medications, supplies, equipment and staff visits—even direct billing of insurance—are managed through a single office. And the lines of communication among the care team are always open, says McVey, so that the likelihood of something falling through the cracks remains low.
The chain of command for infusion nursing begins with Hirsch, who oversees all 31 infusion nurses from Johns Hopkins Home Care Group’s office on Holabird Avenue. “When you’re at the hospital, you have teams,” he points out. “If a home care patient needs additional treatment, we have the infrastructure in place to contact a pharmacist, nurse practitioner or physician.”
In Cohen’s case, McVey draws blood and then drops it off at Green Spring Station or the Johns Hopkins Outpatient Center. Lisa Hall, Cohen’s clinical infusion pharmacist, reviews McVey’s findings from her visit report, obtains and reviews the lab results, and faxes updates to the five physicians involved in Cohen’s care. If the lab work indicates that an adjustment is needed to her IV hydration formula, Hall proposes changes to Cohen’s kidney specialist and receives a new physician’s order.
Expecting the Unexpected
McVey’s weeks are full. She now sees 23 patients in the city, ranging from age 18 to 71, with an array of conditions. She says home care providers often confront challenges such as lack of family support, drug abuse and unsanitary living conditions.
But McVey considers the greatest hurdle to be patients who appear unmotivated to stay on top of their health. She encourages these patients and their families by finding ways to help them stick to the care plan. Successful outcomes can depend on a strong partnership between the patient and nurse. “The one-on-one—getting to know these patients—is so rewarding,” McVey says. Over time, patient and nurse develop a rapport that fosters communication.
Though medical care remains the focus of home visits, conversations easily veer off to other topics, like books, movies or food. In the process, nurses and patients deepen bonds and sometimes discover surprising human connections. One of McVey’s three sons, for example, attended the same college as Cohen’s nephew. And McVey’s sister plays tennis with Cohen’s sister-in-law.
McVey sees much to admire in Cohen, one of her longest-term patients. “Joan hasn’t limited herself by her disabilities. Even when she gets down, she doesn’t say, ‘Poor me.’ She embraces her situation.”
Cohen credits her success to a natural resilience that she can’t explain, only to say that “It’s a conscious decision. I see every day as a new adventure.” And she acknowledges that the home care team fuels her independence. “It’s an extended family,” she says. “It’s nice to know you have a support system that makes you feel like it’s all going to work out.”
—Judy F. Minkove
Johns Hopkins Home Infusions Include:
• Antibiotic and antiviral therapies
• Enteral and parenteral nutrition (formula delivered through a tube or a pump)
• Chemotherapies and pain management
• Pediatric infusions through Johns Hopkins Pediatrics at Home
For the complete list, visit http://www.hopkinsmedicine.org/homecare/services/infusion.