House Calls
Demands of home health care require nurses to be resourceful case managers, careful documenters, independent thinkers, and organizational wizards - and they wouldn't have it any other way

By Cathryn Domrose
December 2, 2002

When Denise Lovejoy, RN, rings the bell of a tidy stucco house in San Francisco's Sunset district, a wizened man in his 90s buzzes her in. Lovejoy, a home care nurse for the Visiting Nurses and Hospice of San Francisco, is making a final visit to the man's wife. The 92-year-old woman recovering from surgery is the sort of patient that home health care professionals are seeing more often these days.

The woman had a hip replacement and spent a few days in the hospital, followed by a month in a skilled nursing facility. She is receiving physical therapy to help regain mobility and nursing care for pressure sores she developed during her recovery.

After eight visits spanning about a month, the sores are healing well, Lovejoy notes. "You have delicate skin," she tells the thin, white-haired woman, who had greeted her in an elegant, red dressing gown and earrings.

"It's just old," the woman insists, her eyes twinkling.

Lovejoy takes her blood pressure and pulse, then listens to her lungs. She tells the patient's husband what a great job he is doing taking care of his wife. She tells them what to watch for and insists that they call if they have any concerns. Physical therapists will continue to visit, she explains, but this will be her last time.

"I'll miss you," the woman says.

Later, driving through Golden Gate Park, Lovejoy says she feels confident discharging the patient. She has to be. As a home care nurse, she knows there will be no new shift to follow up on her assessment, no call button the patient can push if something goes wrong, no physician to summon if some minor condition becomes worse.

"There's nobody else to follow up but you," she said. "You can't just go and do the task. You have to be open to what else is going on."

On their own

As field workers, away from direct supervisors and hospital physicians, home care nurses have always had a certain amount of autonomy. But recent changes in the system of reimbursement for home visits have forced them to become careful case managers, working as a team with the patient, the patient's family and other nurses, as well as therapists, social workers and physicians. They must fill out reams of paperwork. They must plan from the beginning how many visits they will need to meet the health goals they set with patients. They must help the patient find and use community resources like meal services, if needed. They must teach the patient and family members how to do much of the health care for themselves.

Home care or visiting nurses have been caring for the sick in their homes since the 1880s, when wealthy people hired private duty nurses and the poor crowded into hospitals, where many died of infectious diseases. Visiting nurse associations began caring for the poor in their homes. Most of these early patients were new mothers or young people with communicable diseases like tuberculosis.

As contagious diseases disappeared and people began living longer, home care gradually shifted its focus to the elderly and people with chronic illnesses, such as heart disease, lung disease and diabetes. Medicaid and Medicare began covering expenses. Technology such as portable ventilators allowed nurse specialists to set up mini-hospital rooms in patients' homes. Therapists and social workers began visiting patients at home to help them with needs other than nursing care. Visiting nurses began working with community agencies to make sure homebound patients were fed and properly cared for.

Early discharges from hospitals gave home care nurses a new role as continuing care providers, taking over where acute care left off. As more elderly people opted to stay at home for as long as possible and nursing home stays became more temporary, home care nurses began seeing older and sicker patients.

The two fastest-growing age groups for her home care agency are people older than 85 and people older than 100, said Mary Suther, MPH, RN, president and CEO of the Visiting Nurse Association of Texas and chairwoman of the board of the National Association for Home Care. Suther's nurses routinely treat people with heart failure, high blood pressure, diabetes, fractures, strokes and injuries from accidents. "Most of our patients have more than one problem," she said.

Caregivers also are aging. "Now we find a 65-year-old taking care of her 95-year-old mother or father," Suther said. Or people taking care of children, parents and grandchildren at the same time. "We used to have what they called the sandwich generation," she said, referring to people who care for both their parents and their children. "Now, we have the club-sandwich generation."

At the other end of the spectrum, improvements in technology allow infants with serious conditions who never would have survived in the past to go straight home from intensive care units, where they are monitored and cared for by their families and pediatric home health nurses.

"It's very much a specialty," said Louisa Wolter, RN, executive director of new business development for Melmedica Children's Healthcare Inc., a children's home care agency in the Chicago area. "We can do everything at home-medication, feeding, ventilation."

Her agency has treated shaken babies, accident victims and babies with genetic illnesses, all with conditions that require 24-hour care. The nurses, who mostly work one-on-one with their patients, must deal not only with the extensive technology needed to keep the patient alive, but with families reeling from the emotional effects of having a child who requires constant monitoring and care.

Unlike hospital nurses, who rarely have to touch a ventilator, home care nurses need to know how to set it up, take it apart, clean it and teach family members to do the same, Wolter said. Because they have no backup, home care nurses need to be especially alert for any equipment problems.

"In home care, you are keyed into every sound around you because you have to be," she said. "All your senses are working all the time."

Medicare management

In 1967, 1,753 Medicare-certified home health agencies were in operation in the country, most of them community-based, nonprofit organizations. By 1997, home health agencies had increased to more than 10,000, with more than half of them freestanding for-profit organizations, according to statistics from the National Association for Home Care.

Fearing fraud and overbilling-which those in the home care industry deny-the federal government cut Medicare spending. The number of home care agencies dropped to about 7,000 by 2000, which the National Association for Home Care attributes directly to the Medicare cuts enacted in the Balanced Budget Act of 1997.

About the same time, the government demanded increased documentation from home health agencies, including a 14-page, 90-item assessment form with questions on everything from the payment source for home care to safety hazards in the home to the patient's ability to bathe, get to the bathroom and use the telephone.

In 2000, the government changed the system of reimbursement for Medicare-the primary insurer for home care. Instead of paying for every visit and every service, Medicare allots patients a lump sum, depending on their condition, over a 60-day period.

"Reimbursement and managed care have been the biggest changes in home care throughout the '90s," said Monica Seay, RN, administrator of the Visiting Nurses and Hospice of San Francisco. "It decreased the number of visits we could do."

Previously, nurses might visit a patient five times a week, she said. Now, they might make two visits a week.

But in those visits, they must spend time teaching patients and families how to become more involved in their own health care, she added. "They put us in the position of being the risk managers. Nurses now have to be a lot better organized. They have to focus on time management and they need critical thinking skills."

Both managed care and the new reimbursement system-called the prospective payment system, or PPS-have shifted the focus of home care to making patients more independent and responsible for their own care, said Carolyn Humphrey, MS, RN, editor of Home Healthcare Nurse, the only monthly national peer-reviewed home care journal in the country. "The patient needs to become independent as fast as possible, which is good for them as well as saving resources," she said. "The nurse has to give the appropriate amount and type of service, watching the cost at all times."

But where managed care dictated the number of nursing visits and required nurses to get authorization for everything they did, prospective payment gives nurses more freedom to decide what they want to do to meet the patient's needs with the resources they have, Humphrey said.

Because nurses must exercise their own judgment more than they ever did in the past, proper, up-to-date information on patient care, based on evidence rather than tradition, has become extremely important, say those involved in managed care.

"We need to let go of all the old rules of home care delivery and see what's going to get our patients better quicker," said Paula Milone-Nuzzo, Ph.D., RN, FAAN, professor and associate dean for academic affairs at the Yale University School of Nursing in New Haven, Conn.

Specialized care

Many agencies now use advanced practice nurses, including specialists in wound-ostomy, diabetes, cardiac care, pulmonary care and gerontology, Humphrey said.

Specialists may be used as consultants who stay in the office and work with visiting nurses on specific questions, or they may accompany the visiting nurse on a first visit to set up care, then offer assistance or answer questions as needed.

Milone-Nuzzo also sees a role for LVNs, who could do follow-up routine visits for people with chronic illnesses who are stable but still need some help, freeing the RNs to see more seriously ill patients. "But the LVN has to work in partnership with the RN," she said.

Home health agencies now regularly send out physical therapists, occupational therapists, speech therapists, social workers and home health aides, as well as nurses. Nurses often act as case managers, coordinating a detailed system of care. The documentation for this increasingly complicated system of care also has increased in the last five years, and many nurses find they spend more time on the phone or completing paperwork than they spend with patients.

"There's always been a lot of paperwork in home care, far more than in most other areas of nursing," Suther said. Admissions and discharges are especially tedious, home health nurses said. But because their schedules are so flexible, many say they do the paperwork at home, rather than stay late at the office.

New technologies like handheld computers are helping nurses to complete their documentation in the field, Suther said. Nurses at her agency also use digital cameras to show pictures of wounds to physicians or specialists. Some patients have machines in the home that take vital signs, test lung capacity and monitor glucose. Patients are scheduled to start using home electrocardiograms.

Computers and other monitoring tools are expected to become more important in the future, Suther said, as more people become familiar with them and install the high-speed lines necessary to make them work.

A challenging course

Although many aspects of home care have changed in the last few years, what makes it most different from any other type of nursing care-the uncontrolled environment-has remained a constant. Nurses never know what they will encounter when they go to a home.

Lovejoy has entered houses in dangerous neighborhoods accompanied by a security guard. She has visited homes to find that the patient had been dead for at least a day and no one knew about it.

Evelyn Trone, RN, is the administrator and director of nursing for the Yuma, Ariz., office of Nurses Network, a home care agency. Her small branch agency, just 20 minutes from the Mexican border, treats elderly winter visitors, Mexican farmworkers and American Indians from two nearby reservations.

"Establishing trust is a big factor," she said, when visiting nurses have a different cultural background from their patients. "People don't normally see the nurse as their friend, or as someone who wants to help. It takes a little longer to establish rapport."

Language barriers also are a problem, she said, especially because teaching patients and families is so important in home care. Her nurses have been using the Internet to get teaching materials in Spanish.

Elderly visitors with no family to support them are especially vulnerable, Trone said. In some cases, she has had to contact family members from out-of-state and explain the seriousness of the situation to them. The worst-case scenario is a patient who believes he is fine, but really is in danger, she said. Then the nurse must ask Adult Protective Services to intervene. In the meantime, the nurses continue providing care as best they can, Trone said.

Despite the paperwork and other challenges, home care nurses say they love the field because it allows them to use all their skills including assessment, critical thinking, teaching, talking and listening, technological, even salesmanship.

"You have to sell the doctor on what you want to accomplish with the patient. You have to sell the insurance company," said Lovejoy, a French-Canadian native who spent 25 years in hospitals before going into home care. "It's a selling job."

Like a traveling salesperson, Lovejoy spends a lot of time in her car. Her Toyota Corolla serves as her office, supply room, nurses station and break room. She eats lunch in the front seat, keeps her equipment bag and emergency supplies in the trunk, and piles her extensive documentation in the back seat.

Sometimes, she puts in 50 miles a day. Luckily, she enjoys driving. "I love to see what's around," she said, and stops to take photos when she is struck by something unusual-a house painted with blue bubbles, a car completely covered by a hedge. "But it also gives you time to think," she said. Often, she uses the driving time to work out concerns about her patients.

"The freedom you have in home care is fantastic," she said. "But freedom has a price."

Driving time, like all her other time, must be carefully balanced so she can complete all her other responsibilities-paperwork, patient education, follow-up calls to doctors and community resources, hands-on patient care.

The trade-off is worth it, said Lovejoy, who cannot imagine doing any other kind of nursing. "It gives us a perspective on life that's very different from any place else," she said.

Contact Cathryn Domrose at kaguilar@well.com