Gerald Chinchar isn’t quite at the end of life, but there have been times when it seemed that it might not be far away. The seventy-six-year-old fell twice last year, shattering his hip and femur, and now he navigates his San Diego home in a wheelchair. He has multiple conditions, including diabetes, chronic obstructive pulmonary disease, and congestive heart failure, all of which increase his chances of landing in the hospital.
Chinchar says the hospital is the last place he wants to be. He still likes to watch his grandchildren’s sporting events and play blackjack at the casino. “If they told me I had six months to live or go to the hospital and last two years, I’d say leave me home,” Chinchar proclaims. “That ain’t no trade for me.”
Like Chinchar, most elderly people would rather avoid the hospital in their last years of life. But for many, it doesn’t work out that way: they are in and out of the ER, getting treated for flare-ups of various chronic illnesses. Often, they spend the last few days or weeks of their lives in hospital beds undergoing unpleasant treatments and procedures that have little or no chance of extending their lives in a meaningful way. It’s a massive problem that has galvanized health providers, hospital administrators, and policymakers to search for solutions.
Some seniors repeatedly land in the hospital because they are seriously ill and can’t get care at home that could have prevented a trip to the emergency room. They are not ready for hospice care, which is limited to those expected to live less than six months. But they could still benefit from the type of services hospice provides, including home visits by health providers and medications aimed at relieving pain and other symptoms. Those services not only help improve quality of life; they also keep people out of expensive emergency rooms and inpatient units.
Fortunately for Gerald Chinchar, he landed in one of the few programs set up for people like him. Sharp HealthCare, the nonprofit San Diego health system where Chinchar receives care, has devised a way to fulfill his wishes and reduce costs at the same time. It’s a “pre-hospice” program called Transitions, designed to give elderly patients the care they want and need at home and to help them avoid the hospital.
Through Transitions, social workers and nurses from Sharp regularly visit patients in their homes to explain what they can expect in their final years, help them make end-of-life plans, and teach them how to better manage their diseases. Physicians track the patients’ health and scrap unnecessary medications. Unlike in hospice care, patients don’t need to have a prognosis of six months or less and can continue getting treatment for their diseases.
Before the Transitions program started, the only option for many of its patients in a health crisis was to call 911 and be rushed to the emergency room. Now, they have round-the-clock access to the program’s nurses, just a phone call away. “Transitions is for just that point where people are starting to realize they can see the end of the road,” said San Diego physician Dan Hoefer, one of the creators of the program. “We are trying to help them through that process so it’s not filled with chaos.”
The chaos for patients and the expense for Medicare that programs like Transitions seek to address is likely to grow in coming years—10,000 Baby Boomers turn sixty-five every day, and many of them have multiple chronic diseases. Transitions was among the first of its kind when it started ten years ago, but several such programs, formally known as “home-based palliative care,” have since opened around the country. They are part of a broader push to improve people’s well-being and reduce spending through better coordination of care and more treatment outside hospital walls.
Health policymakers increasingly recognize that to control health care costs, they must target the sickest patients. About a quarter of all Medicare spending for beneficiaries sixty-five and older is to treat people in their last year of life, according to a report by the Kaiser Family Foundation.
Another expensive group includes those who are seriously ill but not necessarily at the very end of life. People who are chronically ill and have functional disabilities (like the inability to walk or bathe themselves) make up about 14 percent of the population but account for 56 percent of health care costs, according to a 2014 Institute of Medicine report, Dying in America.
But one huge barrier stands in the way of home-based palliative care: Medicare and private insurers have not traditionally paid for it. Under regular fee-for-service Medicare, the federal government reimburses health providers for office visits and procedures, and hospitals for patients in their beds. The services provided by home-based palliative care, like home visits, don’t fit that model.
Sharp has made Transitions work financially because its patients chose Medicare Advantage plans, the HMO-like part of Medicare. Instead of being paid for each visit or procedure, Sharp receives a set amount from the government (via insurers) for all medical services, including hospital-based care, for every patient every month. If Sharp can save money overall by spending more on home visits and less on hospitalizations, it pockets the savings.
While few Medicare Advantage providers have followed Sharp’s lead, more and more home-based palliative care programs are cropping up nonetheless, mainly as a result of new rules and pilot programs in the Affordable Care Act that reward the quality rather than the quantity of care. But with the Trump administration and Republican congressional leaders vowing to “repeal and replace” Obamacare and making noises about overhauling Medicare, it’s an open question whether the home-based palliative care trend will continue.
Palliative care is for people with serious illnesses, such as cancer, dementia, and heart failure, no matter what their prognosis. The care focuses on relieving patients’ stress, pain, and other symptoms and helps them maintain their quality of life while they continue to receive curative treatment. Hospice care, on the other hand, is designed for people who are expected to live six months or less and have stopped trying to treat an underlying disease; to receive hospice care under Medicare, patients must discontinue such treatment. The idea behind the Transitions program is for patients to first get palliative care and then move into hospice, although they don’t always make that transition.
Dying in America recommended that all people with serious advanced illness have access to palliative, or pre-hospice, care. About two-thirds of hospitals with fifty beds or more have palliative care programs, according to the Center to Advance Palliative Care. The care is delivered by teams of social workers, chaplains, doctors, and nurses. Until recently, however, few such efforts had opened beyond the confines of hospitals.
Kaiser Permanente set out to address this gap. Nearly twenty years ago, it created a home-based palliative care program, testing it in California and later in Hawaii and Colorado. Two studies by Kaiser and others found that participants were far more likely to be satisfied with their care and more likely to die at home, not in the program. One of the studies, published in 2007, found that 36 percent of people receiving palliative care at home were hospitalized in their final months, compared to 59 percent of those getting standard care. The overall cost of care for those who participated in the program was a third less than those who didn’t. “We thought, ‘Wow. We have something that works,’” said Susan Enguidanos, an associate professor at the University of Southern California’s Leonard Davis School of Gerontology, who worked on both studies. “Immediately we wanted to go and change the world.”
But Enguidanos knew that Kaiser Permanente was unlike most health providers. It was responsible for both insuring and treating its patients, so it had a clear financial motivation to improve care and control costs. Enguidanos said she talked to medical providers around the nation about this type of care, but the concept didn’t really take off at the time. Providers kept asking the same question: How do you pay for it without charging patients or insurers? “I liken it to paddling out too soon for the wave,” Enguidanos said. “We were out there too soon. . . . But we didn’t have the right environment, the right incentive.”
Dan Hoefer’s medical office is in the city of El Cajon, which sits in a valley in eastern San Diego County. Hoefer, a former hospice and home health medical director and nursing home doctor, has spent years treating elderly patients. He learned an important lesson when seeing patients in his office: when patients suffered a crisis, which could mean anything from increased swelling in their legs to difficulty breathing, “they were far more likely to be admitted to the hospital than make it back to see me,” he said.
Many of Hoefer’s patients would decline quickly after being hospitalized. Simply being immobilized for even a short period could cause elderly people to lose strength and become confused. Even if their immediate crisis was treated successfully, they sometimes left the hospital less able to take care of themselves. While in the hospital, some got infections, suffered from delirium, or fell.
Hoefer’s colleague Suzi Johnson, a nurse and administrator in Sharp’s hospice program, saw the other side of the equation: patients admitted to hospice care would make surprising turnarounds once they started getting medical and social support at home and got off the hospitalization merry-go-round; some lived longer than doctors had expected. In 2005, she and Hoefer hatched a bold idea: What if they could design a home-based program for patients before they were eligible for hospice?
Thus Transitions was born, modeled in part on the Kaiser experiment. Hoefer and Johnson said the Sharp program focuses more on preventing exacerbations among their chronically ill patients and doesn’t require patients to be hospitalized prior to going into the program. Rather, the pa-tients can be referred directly from primary care providers or specialists.
Hoefer and Johnson set out to convince doctors, medical directors, and financial officers from Sharp’s physician groups and hospitals to try it. But they met resistance from doctors and hospital administrators who were used to getting paid for seeing patients and were reluctant to refer them to palliative care. Despite the concerns, the Grossmont Hospital Foundation, one of the philanthropic foundations of Sharp HealthCare that helps fund patient care and innovative projects, gave Hoefer and Johnson a $180,000 grant to test out Transitions. And in 2007, they started with heart failure patients and later expanded the program to those with advanced cancer, dementia, chronic obstructive pulmonary disease, and other progressive illnesses.
They began to win over some doctors, convincing them to refer patients to Transitions. Jeremy Hogan, a neurologist with Sharp, was initially skeptical, but after he referred some of his dementia patients to the program he quickly realized that the extra home support meant fewer panicked calls to his office and emergency room trips for his patients. Hoefer said doctors started realizing that home-based care made sense for these patients—many of whom were too frail to get to a doctor’s office regularly. “At this point in the patient’s life, we should be bringing health care to the patient, not the other way around,” he said.
Across the country, more doctors, hospitals, and insurers are starting to see the value of home-based palliative care and are figuring out how to pay for it, said Kathleen Kerr, a health care consultant who researches palliative care. One such program, Advanced Illness Management, is run by Sutter Health in Northern California. The program is designed to help patients with late-stage chronic illnesses manage symptoms and medications and plan for the future. Data on the program found that patients had 63 percent fewer hospitalizations after enrolling in it compared to the ninety days prior—an average savings of about $2,000 per member each month.
Providers are motivated in part by a growing body of research. Studies have shown that patients with terminal illnesses who receive palliative care live longer than those who receive the usual care for their conditions. A study published in January showed that in the last three months of a patient’s life, medical care in a home-based palliative care program cost $12,000 per patient less than more typical treatment. Patients in the program also were less likely to use the emergency room and more likely to go into hospice. Two studies of Transitions in 2013 and 2016 reaffirmed that such programs save money. The second study, led by outside evaluators, showed that it saved more than $4,200 per month per cancer patient and nearly $3,500 on those with heart failure.
One reason for the success of these programs is that the teams get to know their patients well, said Christine Ritchie, a professor at the medical school at the University of California, San Francisco. In addition, social workers and nurses say that through home visits they may notice problems—that a patient is out of medication, doesn’t have any help at home, or has no food in the refrigerator—that could lead to a physical and mental decline. “There is nothing like being in someone’s home, on their turf, to really understand what their life is like,” Ritchie said.
On a cold morning in January, Sheri Juan and Mike Velasco, a nurse and a social worker who work for Sharp, walk up a wooden ramp to Gerald Chinchar’s front door. Juan is rolling a small suitcase behind her that holds a blood pressure cuff, a stethoscope, books, a laptop computer, and a printer. They are greeted by Gerald’s wife, Mary Jo. Before Gerald’s doctor suggested, late last year, that he enroll in Transitions, the couple already knew about the program; Mary Jo’s mother was in it before she entered hospice and died, in 2015, at the age of 101.
Gerald served in the Navy in the late 1950s as a payroll clerk, and then he and Mary Jo married and moved to San Francisco. He traveled the country for jobs, painting and sand-blasting fuel tanks. He suffers from breathing problems, including asthma, which he’s had since he was a boy. He also has diabetes, the disease that led to his mother’s death. He recently learned that he has heart problems as well.
Chinchar knows he’s not a young man anymore; after all, he has nine grandchildren and four great-grandchildren. He also never expected to live into old age—his father, a heavy drinker, died of cirrhosis of the liver at forty-seven. Still, he believes he has a lot of life left. So he and Mary Jo want to know how to keep his precarious health from getting worse.
This is where Juan comes in. Her job is to make sure the Chinchars understand Gerald’s diseases so he doesn’t have a flare-up that could send him to the emergency room. She sits beside the couple in their living room. Any pain today? she asks. How is your breathing? Are you more fatigued than before? Is your weight the same?
Juan then checks Gerald’s blood pressure and examines his feet and legs for signs of swelling. She looks through his medications and tells him which ones the doctor wants him to stop taking. “What we like to do as a palliative care program is streamline your medication list,” she says. “They may be doing more harm than good.”
Mary Jo says she appreciates the visits, especially the advice about what Gerald should eat and drink. Her husband doesn’t always listen to her, she says. “It’s better to come from somebody else.” Indeed, Gerald has given up alcohol and has cut back on some of his favorite foods.
On another January day, doctors, nurses, and social workers gather in a small conference room for their bimonthly meeting to discuss patient cases. Information about the patients—their hospitalizations, medications, diagnoses—is projected on the wall. The group’s task is to decide if new patients are appropriate for Transitions, if current patients should remain there, and whether any current or new patients should be admitted to hospice. Patients typically stay in Transitions for about seven or eight months, but some last as long as two years. Some stabilize and are discharged from the program. Others go directly to hospice. Still others die while they are still in Transitions.
It’s nearly impossible to predict how long someone will live. It’s an inexact algorithm based on their mental state, appetite, social support, severity of their disease, and other factors. Nevertheless, the team tries to do just that, and if patients are expected to live less than six months, they may recommend hospice care, which Sharp also provides. This is the case with an eighty-seven-year-old woman suffering from Alzheimer’s disease. She has fallen many times, sleeps about sixteen hours a day, and no longer has much of an appetite. Those are all signs that the woman may be close to death, so she is referred to Sharp’s hospice program.
The group then turns its attention to an eighty-nine-year-old woman with dementia. She also suffers from depression and kidney disease, and was hospitalized twice last year. “She’s a perfect patient for Transitions,” Hoefer tells the team, adding that she could benefit from extra home help.
Another morning in January, Hoefer is seeing patients in his office. One is ninety-four-year-old Evelyn Matzen, who has started to lose weight and is having more difficulty caring for herself. They took her into Transitions eight months ago because “we were worried that it was going to start what I call ‘the revolving door of hospitalization,’ ” Hoefer says. Now, Hoefer checks her labs and listens to her chest. Her body is starting to slow down, but she is still doing well, he tells her. “Whatever you are doing is working,” he says. Matzen’s son Bill says that she has started to stabilize since going into Transitions. “She is on less medication, she is in better condition, physically, mentally,” he says.
Hoefer explains that frail elderly patients have fewer reserves to tolerate medical treatment, and hospitalization in particular. Bill Matzen says his mother learned this the hard way after a recent fall. Though the Transitions nurse had come to see her, the Matzens decided to go to the hospital because they were still concerned about a bruise on her head. While she was in the hospital, Evelyn Matzen started hallucinating and grew agitated. Being in the hospital “kicks her back a notch or two,” her son says. “It takes her longer to recover than if she had been in a home environment.”
Outpatient palliative care programs are cropping up in various forms, some run by insurers, others by health systems or hospice organizations. Others are for-profit, including Aspire Health, which was started by former Senator Bill Frist in 2013. Some of this growth is because providers have seen that it works, but it is also because of changes in how providers are being paid. For example, the federal government began to shift Medicare payments under President Obama from a model based on traditional fee-for-service to one that rewards better care.
The Affordable Care Act has also driven the trend by giving providers the freedom—and the funding—to innovate. Sutter Health expanded its program after receiving a $13 million, three-year grant in 2012 from the Center for Medicare & Medicaid Innovation, an agency created by the ACA to fund experiments that improve health and control costs. Another program in New York was part of an accountable care organization, a network of doctors and hospitals formed under the health law that shares financial and medical responsibility for patient care.
Late last year, the University of Southern California and Blue Shield of California received a $5 million grant through another Obamacare creation, the Patient-Centered Outcomes Research Institute. They plan to provide and study different types of community-based palliative care and measure the impact on emergency room visits, hospital stays, caregiver depression, and patients’ symptoms and pain.
Christine Ritchie believes there will be even more home-based programs in the years to come, especially if palliative care providers work alongside primary care doctors. “My expectation is that much of what is being done in the hospital won’t need to be done in the hospital anymore, and it can be done in people’s homes,” she said.
But home-based palliative care is still not widespread, and the programs that exist face hurdles. First, there are not enough trained providers available to meet the need. In addition, creating and sustaining home-based palliative care programs requires a cultural shift for doctors and patients. Some providers are unfamiliar with the concept, so they may not refer patients. And patients themselves may be reluctant to participate, especially those who haven’t been told clearly that their condition is terminal.
Whether the home-based palliative model continues to spread also depends on what President Trump and the Republican Congress do with health care. If they repeal and replace Obamacare but don’t include provisions to encourage innovation, the outpatient palliative trend may lose momentum. The new health and human services secretary, Tom Price, has criticized the Center for Medicare & Medicaid Innovation and efforts to move health care providers away from fee-for-service payments. Republicans have also signaled support for transforming Medicare and providing seniors with premium support to buy private insurance, a move that some experts believe could result in more seniors selecting Medicare Advantage. In theory, that could create more opportunities for innovation, since Medicare Advantage plans provide greater payment flexibility to health care providers. In practice, however, very few providers have utilized that flexibility the way Sharp has.
Researchers say it’s too early to tell what will happen, but some fear that without that flexibility provided by the Affordable Care Act, the recent gains in home-based palliative care could be lost. “To have that go away when you know you could be doing a lot of good is heartbreaking,” Kathleen Kerr said. “I am very worried about what’s going to happen.”