Rosemary Donnelly rests in her power recliner tucked beneath a soft blue blanket. Her eyes are closed, her muscles atrophied. And dementia has robbed the 85-year-old of the ability to speak. For the past 15 years, her daughter, Diana Fabiano, has lovingly cared for her. “My goal is to keep her at home as long as possible, because at home she is taken care of better,” she told The Greenville News. “It’s one-on-one.”
But her mother is so frail and debilitated that getting her to the doctor for the necessary visits or to the lab for tests is an ordeal. So Fabiano retained a service that brings the doctor to her. “It would be a hardship to try to get her back and forth. It’s a two-man job to transfer her,” she said. “It’s easier for someone to come check her out here at home.”
Making house calls
Dr. Romin Shah arrives at Fabiano’s Greenville home carrying Donnelly’s chart and a backpack filled with his stethoscope, blood pressure cuff and other medical equipment. He holds out a hand to Fabiano, then turns his attention to her mother. Shah was working as a hospice physician four years ago when he realized that some patients were being turned away because they weren’t terminally ill. Yet they were so fragile and sick, they needed home care.
“There is a large population of frail, elderly, debilitated patients who are homebound and it requires a taxing effort to get out to a physician,” he said. “And if they don’t get access to care, we will see them fall through the cracks, rehospitalized, going back to the ER.” Shah, a geriatrician, and his business partner, Johnnie Garmon, decided to fill the void by launching Providence Care, a medical practice that offers physician and nurse practitioner house calls to homebound patients.
“So many people who are elderly struggle to get in and out of the home,” said Magen Fowler, chief development officer for the company. “And the average geriatric patient sees five to seven physicians.” Around the country, practices like these are beginning to sprout up as the population ages. It’s “a small but growing trend that may pick up speed as we move away from fee-for-service,” said Alwyn Cassil, an independent health policy consultant with Policy Translation in Silver Spring, Maryland.
A need for care
The Center for Medicare and Medicaid Services has a demonstration project in 14 states – though not South Carolina – to gauge the effectiveness and cost of providing care at home for up to 10,000 Medicare beneficiaries with chronic conditions. “Home-based primary care allows health care providers to spend more time with their patients, perform assessments in a patient’s home environment, and assume greater accountability for all aspects of the patient’s care,” CMS said in its description of the project.
“This focus on timely and appropriate care is designed to improve overall quality of care and quality of life for patients served, while lowering health care costs by forestalling the need for care in institutional settings,” it says. Elderly patients in their declining years consume the highest share of health care spending, according to a Brookings Instution report, which notes the fastest-growing portion of the Medicare population is people with five or more chronic conditions.
While CMS won’t provide an estimate of projected savings, one statistic cited in the Brookings report suggested that a 5 percent reduction in end-of-life costs would save Medicare $90 billion over a decade. The number of Americans 65 and older is expected to grow from 40.2 million in 2010 to 54.8 million in 2020, according to the U.S. Census Bureau. And research shows they want to grow old in their own homes.
“Everybody wants to age in place … and most people can’t afford a nursing home,” Fowler said. “Families don’t know what to do. We are trying to meet this huge wave of elderly people where they are.” Columbia health care consultant Lynn Bailey said making house calls is “a desperately needed service.” Getting a homebound patient to the doctor requires an ambulance, which costs $300 to $700 depending on the distance traveled, she said. And most physician’s offices don’t have a place to hold someone who’s on a stretcher.
“It is very patient-friendly to be able to have a nurse practitioner, physician assistant or physician come and see you in your home,” she said. “It’s a terribly needed service.” While nine of 10 Providence Care patients are seniors, there are younger patients as well. They may have dementia, like Fabiano’s mother, Shah said. Or they have ALS, congestive heart failure, Parkinson’s disease, chronic obstructive pulmonary disease, HIV, end-stage renal disease or other conditions that leave them homebound.
Thief of personalities
Shah listens to Donnelly’s heart and takes a blood pressure reading. He examines her skin for pressure sores and finding none, asks Fabiano whether her mother seems weaker than usual. Rosemary Donnelly was a vivacious auburn-haired stunner in her younger days, her daughter says. She worked as a respiratory therapist at the VA in Cleveland before moving to her daughter’s home in Buffalo, New York, after she was diagnosed with dementia. A sparkling conversationalist and avid reader, she loved spending time listening to her vast music collection. She was a gourmet cook who prepared Beef Wellington and other memorable meals for her husband and four children. And at Christmas, the family looked forward to her beautifully decorated cookies with eager anticipation.
“She was very pretty and nice, and she was always kind to people. She always looked for the good in somebody,” her daughter said, smiling at her mother in a way that reveals she still sees her like that. “This is a terrible disease,” she adds. “It really robs a person of their personality.”
Now, Donnelly’s gray hair is neatly pleated into a braid. Each morning, Fabiano, a retired teacher who moved to Greenville last year to be closer to her daughters, rises and prepares her mother’s medications, then gets her cleaned and dressed.
One of Fabiano’s daughters helps get Donnelly into a wheelchair with a Hoyer lift – a device that uses hydraulic power to move people – and they roll her into the living room, where the lift is again used to transfer her to the recliner. Fabiano fixes her mother’s hair, gives her her breakfast and medications, and turns on the TV or music. “She’s happy and comfortable there,” she said. “It doesn’t seem like she’s actively watching, but I think she’s listening.”
After lunch, the routine is reversed so Donnelly can take a nap. Then she’s brought back out for dinner and her evening meds. It wasn’t always like this. In the beginning, Donnelly was just forgetful. She couldn’t remember what happened the day before and kept asking the same question over and over. But by 2000, Fabiano realized her mother couldn’t live alone any more. So she turned her first-floor family room into a bedroom for her.
She’s been unable to speak or move for several years now. She has trouble swallowing, making aspiration pneumonia a constant threat. Her bones are so brittle that Fabiano always fears she’ll cause a break just moving her from one room to the other.
Quality of life
Each day, Shah sees five to six patients. During his house calls, which can last up to an hour, in addition to the medical exam he reviews lifestyle issues such as diet to make sure too much salt, for instance, isn’t aggravating a patient’s condition. He talks to the family about what to expect, such as worsening agitation with dementia. And a major focus is on reviewing prescriptions for drug-drug interactions. Fowler said the average patient is on 10 to 15 medications. That can cause problems from altered mental states to falls, Shah said.
“We act as a safety net to help prevent this constant cycle of patients who need small tweaks in medications or adjustments in care to prevent them from going back to the hospital,” he said. “A couple day’s hospitalization will set them back weeks or months,” he added. “And that would break up their whole quality of life.”
After looking over her medications, Shah takes Donnelly off an Alzheimer’s drug, which he says has only been shown to be of modest benefit in the first six months of dementia. Like most patients with chronic illnesses, Donnelly is seen every 5-8 weeks, more often if they’re having problems, Fowler said. Providence also partners with a company that provides home laboratory and X-ray services and with home health, therapy and social work services so patients don’t have to leave for those supports either.
With three offices in South Carolina, including one in the Upstate, Providence Care, which has a sister company that offers hospice services, now has between 1,500 and 2,500 patients statewide, Fowler said. Often, patients are referred by other doctors because they’ve missed appointments with them, she said. While Shah was the only one making house calls at first, the business soon grew so much that three nurse practitioners and another physician were added to the mix.
It’s hard to recruit doctors who want to work in the home environment, Fowler said, but she’s trying. House calls are covered by Medicare and Medicaid, which reimburse at the same rate as a doctor visit. The company also has a nonprofit foundation funded by donations that covers uninsured patients, she said. Though caring for her mother is sometimes a challenge, Fabiano says she doesn’t mind. She wants her to have the best life she can. “She’s aware on levels that people don’t realize,” she said. “When she’s in an unusual situation, she’s frightened. She’d rather be here at home.” It’s common for patients with dementia to be upset when they’re taken out of their routines, Shah said. And that can lead to a vicious cycle of worsening symptoms, more medications and sometimes delerium. “The most effective thing for her and her quality of life is to be home with her loved ones,” he said. “We need to respect those wishes at this point.”