Gordon Surber and Mark Hailey have the same terminal lung disease. Brothers-in-law, they live next door to one another on the Hoopa Valley Indian Reservation in rural Northern California. But they live in different worlds when it comes to health care.
“I’ve got to tell myself, slow down — slow down,” he said. “If I go at it half-throttle instead of whole-throttle, I’m usually pretty good. But it’ll probably be what ends me, my breathing.”
Hailey, 60, was a professional musician who once played bass in a country band called Gun Shy. He spent nearly a decade marooned in a black leather armchair because of obesity, degenerating hips and lung disease. Last year, however, the roulette wheel of health coverage spun in Hailey’s favor, when he learned he was eligible for a new program offering palliative care, a medical specialty that focuses on managing the pain and symptoms of severely ill people.
A year ago, Hailey’s blood oxygen levels were so low from chronic obstructive pulmonary disease, or COPD, that he was “almost dead,” said his doctor, Michael Fratkin. He weighed 394 pounds, and the fat weighing on his chest kept his scarred lungs from fully expanding. The stress on his arteries had caused the right side of his heart to fail. Fluid was backing up in his swollen legs and belly.
Fratkin is a palliative care physician, with advanced training in treating the symptoms of chronic and terminal illness. The company he founded, ResolutionCare, helps people manage their diseases at home through in-person visits and a videoconferencing app called Zoom. Fratkin and his team aim to help people live as fully as they can for as long as possible, then die in peace — “a soft landing,” he calls it. A “crash landing” is when someone who wants to die at home dies instead in an intensive care unit, after being subjected to procedures that increased their pain and confusion.
Fratkin feared that Hailey was going to crash. He told Hailey’s wife, Dana, to prepare for his death when Fratkin met the family at St. Joseph’s Hospital in Eureka. But Mark Hailey stabilized and was transferred out of the ICU to the transitional care unit. Over the next two weeks, someone from Fratkin’s team — a nurse, social worker or chaplain — came by Hailey’s room each day. For the first time in years, Dana didn’t feel like she was alone, watching her husband suffocate, she said. And thanks to a recently passed California law called SB1004, the team could treat Hailey at home.
The measure didn’t cause a big stir when it passed in 2014, or when it came into full effect in January 2018. Yet it quietly launched an important — and in the United States, unprecedented — transformation in care for some of the nation’s poorest, sickest people.
The bill mandated that all members of Medi-Cal, the state’s insurance program for low-income residents, who meet clinical criteria with any of four diseases — COPD, congestive heart failure, liver disease or advanced cancer — have access to at-home palliative care. Palliative care is different from hospice, the medical and social services designed for people who are terminally ill. Congress created the Medicare hospice benefit in 1982, which defined the program’s intended patients as people who are likely to die within six months and who have decided to forgo further attempts at curative treatment.
Like hospice, palliative care includes a physician’s help in managing pain and other symptoms, the services of a social worker and a home health nurse, and spiritual counseling. Unlike hospice, it can be provided at any stage of illness and it can be offered alongside curative care.
There’s strong evidence that palliative care can improve the quality of life for terminal and chronically ill patients, while reducing emergency room visits and hospitalizations by as much as half. Studies consistently show that this curbs overall health-care costs, a benefit that appeals to managed care systems — health-care plans that receive a flat annual fee per patient, rather than getting paid according to the number of medical procedures they perform. Managed care plans such as Kaiser Permanente and the Veterans Health Administration began offering palliative care more than 10 years ago, and many others — including Sutter Health, Aetna and Blue Shield of California, have followed suit.
Although there are many efforts to expand palliative care in both public and private health systems across the United States, SB1004 is the first attempt to extend it to the Medicaid population on such a large scale, says Kathleen Kerr, a health-care analyst who consults with the California Health Care Foundation.
The move was not without risk, says James Cotter, regional medical director for Partnership HealthPlan, one of the nonprofit groups that delivers Medi-Cal’s services. Many Medi-Cal members struggle with multiple illnesses, as well as other factors, such as mental illness, substance abuse, or a lack of housing, transportation or food, that complicate palliative care, he says. There was no guarantee that the program would break even, as SB1004 required it to do. So far, however, the experiment has worked: During the first six months of the pilot program, $3 were saved in hospital costs for every $1 spent, Cotter says.
“California is the only state that has a law mandating access to palliative care for Medicaid beneficiaries, so everyone else is watching [the SB1004 program], says Diane Meier, a geriatrician at the Mount Sinai School of Medicine in New York. She is also director of the Center to Advance Palliative Care, a national group that works to increase palliative care access.
Hailey stopped playing music more than a decade ago, when a degenerative spinal disease made it too painful to walk. Depressed, he sat down in a black leather armchair and started drinking about 30 beers a day, he guesses. Soon he had gained so much weight that he couldn’t get up.
His lung disease, COPD, is unpredictable — some people survive for decades while others die suddenly from a minor cold. The most common course is a steady decline, interrupted by unpredictable, increasing episodes of terrifying breathlessness. These episodes often cause people to rush to the ER. “If you felt like you were suffocating, you’d call 911 too,” Meier says.
These hospitalizations, which are often avoidable, are one reason that COPD in the United States is projected to cost nearly $50 billion a year by 2020. The architects of SB1004 hope that ResolutionCare will help Hailey manage his breathlessness at home, through supplemental oxygen, inhalers, medications and a 24-hour hotline to call in a crisis.
After Fratkin’s team got Hailey’s COPD symptoms under control with medications and supplemental oxygen, they started chipping away at the other problems, such as immobility and pain from his degenerating hips. The team ordered a special wheelchair, then started building up his strength with physical therapy so he could move himself between a new, reclining hospital bed and his chair. Even slight movements cause Hailey excruciating pain, so Fratkin is treating his pain carefully with opioids.
Little by little, the improvements in Hailey’s quality of life lifted his spirits. As his pain mellowed, he could once again enjoy small pleasures, such as watching his grandkids play out in the yard or playing fetch with the couple’s four dogs. With the help of Fratkin’s team and support from Dana, he stopped drinking. Nine months later, he had shed 130 pounds.
“Palliative care has become like my religion,” he says.
Hailey hopes that he can lose enough weight to be a candidate for hip surgery. He even envisions getting back to work, perhaps as a medical dispatcher. Fratkin’s goal for Hailey is musical. “I want him to pull that bass off the wall,” he says.
Just up the road, Surber, Hailey’s brother-in-law, also has end-stage COPD, but he cannot get the same services. At 57, he has traditional Medicare insurance — a logging accident left him disabled years ago, allowing him to enroll before age 65 — and additional health coverage through his wife. Neither policy covers the at-home palliative care that ResolutionCare provides.
When Judy Surber — a medical grant writer — discovered that their insurance doesn’t cover the care her brother is getting next door, she felt blindsided. “I always worked hard to keep good insurance,” she says. “Right now, it feels like that backfired.”
Many people throughout the United States still cannot access palliative care because it isn’t available where they live or because their insurance doesn’t cover it.
Recently, the Centers for Medicare and Medicaid Services (CMS), the federal agency that administers Medicare, has expressed interest in expanding palliative care access for traditional, fee-for-service members. (Some Medicare Advantage plans, which operate through contracts with managed care organizations, do cover palliative care.)
In March, a federal advisory panel recommended that CMS put two new payment models for palliative care to the test. The models suggested creating per-member, per-month payments for palliative care providers, to allow them to invest in things such as 24/7 telephone support and transportation for their patients, says Meier, who testified before the federal advisory panel.
CMS declined to comment on whether a test is in the works, but Meier says the agency has performed almost a year’s worth of research into the complexities of the models and is now considering whether to launch a pilot.
“We don’t know what their decision will be nor do we know when they will make it,” she says. “But we do know they’re considering it.”
Many thorny questions remain, such as who should be eligible for palliative care and what Medicare should pay for it. At present, there is enormous variety in the rate of reimbursement for palliative care, ranging from less than $200 to about $1,000 per month per patient. The Medicare hospice benefit provides many of the same services as palliative care, but at a far more intensive level, and costs about $5,000 per month per patient, Meier says.
“It’s a marketplace. Buyers — meaning the health plans — are looking to get the best deals from various vendors and provider entities, and still get the result they want, which is the avoidance of the hospitalization,” Meier says.
Meanwhile, Surber’s health is rapidly deteriorating. Even simple things, such as getting Gordon’s oxygen tanks delivered, can take an agonizingly long time because of their remote location.
Palliative care could do a lot for Gordon, including help him use his medicines effectively and avoid redundant trips to the ER, Fratkin says. “I can think of 20 simple things we could do to help them enjoy each other and take the pressure off Judy, instead of her having to watch a slow-moving train wreck,” he says
A pillar of the palliative care approach is supporting caregivers, he says. “There’s tons of data on what Judy’s giving up, in terms of her own vitality, longevity, and resilience,” he says.
On a hot summer Sunday, Judy and Gordon Surber decided to take their three grandkids down to swim in the aquamarine Trinity River. Judy’s and Gordon’s son, Roger, helped load a cooler full of Pepsi, sliced salami and cheese into the car, while Judy squeezed 1-year-old Kinsinta’s plump legs into a bathing suit.
Down at the river, Bella, 9, and Roger Jr., 3, made war against an invisible water monster. Kinsinta scooped sand into her mouth almost as quickly as Judy could wipe it out. Gordon sat under the shade of a portable shelter, curling his shoulders forward and letting his head droop down onto his chest. Soon he went to sit in the car to discretely sip from his oxygen tank. He fell asleep there. Staring at the water, Judy contemplated their predicament. “I think the hard thing is that we don’t know what we’re up against,” she says. “Will he have time? What will it be like in the end?”
Emily Underwood’s reporting was supported by a USC Annenberg Center for Health Journalism California Fellowship.