Set the PACE
One-stop care program for the elderly allows nurses
to build strong bonds with patients for the long term
By Wendy L. Bonifazi, RN, CLS, APR
November 29, 2004
What if you could take all the services and care that a nursing home provides, and provide them at home?
Ask elders if they’re willing to go to a nursing home, and an estimated 30% will say they’re unwilling — and another 30% may say they’d rather die, according to an article in the 1997 issue of the Journal of the American Geriatrics Society. Even for those who are willing, a bed is not always available in their preferred facility — or any facility at all.
Although some of the fears about nursing home care are unfounded, it’s no surprise that most of us would rather stay at home than live in an institution, no matter how attractive and accommodating it is. Alternatives such as assisted living facilities and senior housing can’t — or won’t — provide services for elders who wander, are incontinent, or have complex health needs. But how else can frail elders, particularly those with physical and mental limitations, navigate the maze of medical services, even with the assistance of family?
The goal of PACE — the Program of All-inclusive Care for the Elderly — is to do just that. Rather than struggling with the complexities of payment and providers, PACE programs provide a one-stop shop of preventive, primary, acute, and long-term services for their enrolled members. Once a person is enrolled in the program, PACE takes on responsibility for managing the health, mental, and psychosocial needs of each participant. And nurses are a key component of their care.
Special connection
“For me, this is the essence of nursing,” says Sheri Filak-Taylor, BSN, center director of Total Longterm Care, Denver. “I’ve been an RN since 1983 and worked in critical care, the ED, ICU, and home care, and this is the first job where I feel I make a difference in someone’s life, day to day, at whatever stage they are physically or cognitively. We really bring joy to the later years.”
Being there for the long term is what is most satisfying for many nurses who work with PACE patients. “The main satisfaction is we care for people over extended time and get to know their special needs,” says Pat Thornton, RN, MSN, GNP-C, clinic nurse practitioner at On Lok Senior Health Services, San Francisco. Thornton, a former Peace Corps teacher, also was a physical rehabilitation nurse for 13 years and worked with elders and at an AIDS hospice. “I wanted to do primary care nursing and long-term care,” she says. “I went back to school to become a nurse practitioner. I knew about On Lok, and was lucky a job was available here. It allows us to manage elders with functional and medical problems, in the community, through a multidisciplinary approach. We can provide continuity and stable care. Instead of seeing elders with multiple medical problems, we see them as individual human beings.”
Nurses also feel they can make a difference in their patients’ lives in a direct way through the PACE program. The program, they say, allows for strong bonds between patient and nurse. “We bond strongly with participants, and that really means a lot to staff,” says Lynn Kefgen, BSN, director of clinical and nursing operations, Providence ElderPlace, Seattle. “We become like family, and we know these participants inside out, their needs and joys.” Kefgen, who worked in med/surg and ICU before spending 12 years as a home health nurse and manager, was the first nurse to join the program, and put the clinic together from scratch.
“I heard about it while I was in home health, and it seemed too good to be true,” she says. “There’s nothing like it. We do follow federal guidelines, but it’s rewarding because we don’t have to follow traditional rules. We use funds in the best ways for individual participants.”
Tending to their needs
“Our philosophy is based on the belief that we best serve chronically ill elders and their families, within the community when possible, by providing a seamless continuum of care that respects them as individuals,” says Jennie Chin Hansen, RN, executive director of the On Lok PACE program. “Rather than looking at people as patients who passively receive care, we refer to them as participants because they are actively engaged in the program.”
The extent of care and services is comprehensive and extensive, Hansen says. Working from a clinic base open five or six days per week, PACE offers participants medical care from a clinic provider (a physician or, in some states, a nurse practitioner) who has a limited caseload, all necessary prescription drugs and medical equipment, and specialist services such as audiology, dentistry, optometry, speech, and podiatry, including routine and preventive care. Through an adult day care program, participants have a place to gather, socialize, and enjoy recreational activities, while receiving nursing care and monitoring, meals, nutritional counseling, social services, personal care including bathing and foot care, and physical and occupational therapy. Transportation is provided. Some PACE programs also include their own housing component for participants.
The social component is important to participants, particularly those who otherwise have few opportunities for interaction, and limited or no family contact. At a time when death has ended many relationships, friendships still can flourish. So does romance; in Denver and at other PACE programs, participants have fallen in love and married.
If there is a change in functional or mental status, participants can receive a same-day evaluation by a nurse or physician.
At their own homes, as needed, PACE participants also can receive personal, home health, and respite care. When necessary, the PACE program also covers hospital and nursing home care. PACE programs also have found and furnished apartments for homeless participants. When participants need 24-hour care, PACE has complied, sometimes by providing live-in staff (on shifts) in cluster apartments that allow several staff and participants to live side by side in multibedroom apartments.
Comforts of home
“We have one woman in her late 50s who has very complex problems — she’s diabetic, on dialysis, had leg surgery, eye problems, and needs lots of specialists,” Thornton says. “Her care is very labor-intensive, and she must see a nurse daily. Although shevery disabled, we’re able to care for her in the clinic and the day center, where she’s developing her musical pursuits on piano and harmonica, and other aspects of her personality. She’s thriving here.”
Another participant is a functional quadriplegic who lived in a nursing home for many months. Through On Lok, he was provided with federally subsidized housing, a Hoyer (patient) lift, meals, and regular turning to prevent skin breakdown. The man daily visits the day program for recreational activities.
“We accepted one woman who weighed 600 pounds, was diabetic, and had a mental health diagnosis,” Kefgen says. “She went from agency to agency because it was so difficult to care for her. She was very challenging, but we didn’t have to solve all her health problems, just make her life better. We sustained her at home for over five years with twice-daily visits, and twice-weekly clinic visits. After she had coronary heart failure and was completely bedridden, she spent her last two years in a nursing home. But she still came here some days, and we maintained her care and followed her there. She was quite outgoing, and she knew as much about our staff and other participants as we knew about her.”
A pair of fraternal twins who had always lived together although one had a developmental disability, entered the program when the other developed dementia. “With HUD cluster housing, 24-hour aides, and chore service, they’ve been able to remain together despite the Alzheimer’s progression,” Kefgen says.
When he no longer could provide care at home, one man enrolled both his mother, a centenarian, and his brother, an amputee who has a developmental disability. Both mother and son have since died, but the brother remains in the program. “He really bloomed and blossomed here,” Kefgen says. “He loves to come to the center, and now he’s playful, verbal, and delightful.”
PACE also enabled a woman in her late 70s to leave a nursing home after her aortic aneurysm repair, even though she was paralyzed from the waist down. “We got her into an apartment alone, with twice-daily home and center care,” Filak-Taylor says. “She was at home and cognitively alert for 18 months before she passed away.”
Taking off
The first and subsequent PACE programs are based on the British day hospital model of care. The first to open in the United States, in 1973, was the San Francisco-based On Lok program. During the next 10 years, it expanded its services, and in 1983, was the pilot for new financing that used government funds on a capitated (maximum per person) basis for each participant. With its success, the federal government approved 10 other organizations for similar services and billing, much of it funded by the Robert Wood Johnson Foundation, the John A. Hartford Foundation, and the Retirement Research Foundation.
The federal government subsequently approved PACE programs as qualified recipients of Medicare and Medicaid, although it set limitations on the number of new PACE programs that may open each year. California has approved them as Medi-Cal recipients. Programs also accept private payment from participants who don’t qualify for other benefits.
PACE is not open to everyone. Eligible individuals must live within the designated PACE service area, and be able to live safely at home at the time of their enrollment, yet meet their state’s certification criteria for requiring nursing home care because of their physical and mental needs.
Most programs are funded to accept only participants who are 55 or older, but some are able to accept participants older than 17. If a PACE participant needs nursing home care either for short-term rehabilitation or a longer period, PACE pays for care and continues to coordinate care and services.
Now, 40 PACE programs in 19 states are in operation, with more opening. For a complete list, see www.NPAonline.org or call the National PACE Association in Alexandria, Va., at (703) 535-1565.
Nationally, most PACE participants are similar to their counterparts in nursing homes. According to the National PACE Association, on average a participant is 80 years old, has 7.9 medical conditions, and limitations in about three of the five major activities of daily living (bathing, dressing, feeding, toileting, and transferring). Almost half are diagnosed with dementia. Yet despite the complexity of their conditions and needs, more than 90% continue to live in their community home, according to the National PACE Association website (www.npaonline.org/content/research/ who_served.asp).
The PACE programs pride themselves on culturally sensitive care and multilingual staff to serve immigrants. For example, San Francisco’s On Lok website can be read in any one of nine languages (www.onlok.org), primarily Asian dialects, and the program provides staff fluent in each. The Bronx, N.Y., PACE program provides staff fluent in English, Russian, Korean, Chinese, and Spanish — and who know the different cultural concerns of, say, Hispanics from Puerto Rico, the Dominican Republic, Mexico, or South America. When Muslim participants in the Sisters of Providence PACE program in Seattle (which serves American Samoan, American Indian, Japanese, Chinese, African, Mexican, and other participants) celebrated Ramadan, which requires extensive fasting, Muslim staff explained the dietary exemptions for elders, tested blood sugar daily for those fasting, and provided home health services for those who would not attend the clinic for the month. PACE programs also strive to integrate family members into regular care planning sessions and in providing whatever services or support they desire.
“PACE allows family members to reclaim and live their own lives,” Kefgen says. “It allows them to be the spouse or child, not the caretaker or boss who restricts the participant’s life. When they’re not just the provider, they can relax and visit, and just be with the person.
“We had two daughters who brought their parents with Alzheimer’s, and who were declining so much the daughters were just fraught. We found an adult family group home for the parents, and developed so much trust and rapport with the daughters that one felt confident taking a month’s vacation because she trusted us to deal with any problems that came up.”
The PACE programs are attractive to payers because they reduce overlap of services, provide preventive care, and most are able to shorten acute and long-term care stays. For many patients, the National PACE Association reports that they are able to provide care less expensively under one umbrella than participants or government sources would pay otherwise.
Centralization of records gives all providers access to thorough, up-to-date reports, insight into family and personal dynamics, and a better grasp of what’s necessary for a holistic approach. Centralized pharmacy services decrease the chances of negative interactions and other polypharmacy problems.
Mutual satisfaction
Nationally, PACE programs report little turnover of their nursing staff. Nurses attribute this to better teamwork in the PACE environment and higher job satisfaction. The collaborative approach means that the physician, nurses, therapists, and direct care providers meet each morning to review their participants, discuss any changes, and brainstorm solutions to any potential problems. There’s no hierarchy except when it comes to signing orders, and the physicians are there in the meeting and ready to do so.
“Working in PACE is such an opportunity to learn because nurses see something new every day,” Kefgen says. “And it gives nurses an opportunity for growth and daily satisfaction.”
“Everyone has their say, and PACE allows different disciplines to problem-solve together and respect each other, whether a physician or a geriatric assistant,” Thornton says. “Nurses are in the middle of care and treatment, playing a complex role in coordinating care and communicating with participants, families, and the team.”
“You really get job satisfaction when you make a difference in people’s lives every day,” Filak-Taylor says. “You lose that in a hospital, and even in long-term care, but that’s why I became a nurse.”
For families and participants, PACE programs can alleviate daily fears and responsibilities for their health and welfare.
“I didn’t know doctors or English or transportation,” says Jie Bing Huang, 79, through translator Sabrina Cheng, MSW. “My children are working so there was nobody home and nobody to talk to. My health was declining, so I asked to come into On Lok in 2000. It gave me hope because they really listen to me, I can rely on them, and I know that someone who knows my health condition will check on me regularly and take care of me and comfort me.”
Although, on average, participants are enrolled for five years before they die, dozens have been participants for 10, 20, or more years, including some now in their 90s or 100s. “We learn to provide what’s important to them, and are able to do what they need most at the end of life,” Thornton says. “Ninety percent of participants are very, very rewarding.”