Cleo Boyd of Santa Rosa was close to despair in early 2013.
Her husband, Robert Boyd, 89, was constantly in and out of the hospital, receiving emergency treatment for complications related to a heart problem, chronic obstructive pulmonary disease, and other long-term health issues. When he came home, Cleo Boyd, 92, wasn’t always sure how to best take care of him.
“He would hardly get home before he was back in,” she said. “I really didn’t know what I was going to do. I was trying to be positive, and tell myself it’s going to be OK, but I didn’t really believe it.”
Then, in March of that year following two particularly serious hospital visits, staff referred the couple to an outpatient palliative care program called Advanced Illness Management offered by northern California health-care network Sutter Health. The program provided home-care visits by a nurse, social worker, and physical and occupational therapists to the Boyds’shousehold, who assessed the couple’s needs and found ways to make it easier for them to manage Robert Boyd’s health problems at home.
The result is that Robert Boyd has stayed out of the hospital almost entirely, except for one visit because of a problem with his defibrillator. Everything else has been managed from his home.
Palliative care — a multidisciplinary approach to helping people with serious, chronic and life-threatening illnesses better manage their conditions and improve their quality of life — is commonly provided to patients in the hospital, with about half of acute-care hospitals in the state offering the service, according to The California HealthCare Foundation.
But a growing number of palliative care programs, including the one at Sutter Health, are being expanded to chronically ill patients in community clinics and at home, spurred by federal and state health reforms, said Judy Thomas, Executive Director of the Coalition for Compassionate Care of California, a statewide collaborative of health-care organizations and individuals supportive of palliative care.
“It’s really about quality of life, it’s not about medical treatment,” she said. “As people are living longer, there’s more and more people living with complex medical conditions, and our (current) health-care system is not designed to provide them with the best care.”
California bill expands services
Legislation signed by Governor Brown in September will further expand access to palliative care services. The bill, which takes effect Jan. 1, requires the Department of Health Care Services to define standards for palliative care under Medi-Cal, the state’s health insurance program for the poor. The department must work with Medi-Cal managed care plans to increase access to these services.
In an email, department spokesman Anthony Cava said the work will be done over the next several months, and new palliative care options will be phased in based on health plan capacity and the availability of palliative care teams. The agency believes that the cost of providing palliative care will be offset by a reduction in hospital and nursing home stays, he said.
Health care reform is likely to continue to encourage the expansion of palliative care programs. The Affordable Care Act seeks to gradually shift the health-care system away from the traditional fee-for-service payment model by offering financial incentives to hospitals and clinicians that can improve patient health while reducing costs. Palliative care fits into that approach.
Home visits reduce hospitalizations
When the palliative care nurse came to the Boyd’s house, Cleo Boyd learned how to handle her husband’s medical equipment, and monitor his blood pressure, oxygen levels and weight.
Meanwhile, a social worker, Catherine Arnold, connected Robert Boyd to services he was entitled to through the U.S. Department of Veteran’s Affairs, including 16 hours a week of in-home caregiver support such as cooking and cleaning, meals on wheels, and vision care for his failing eyesight.
Once Robert Boyd’s condition stabilized, Sutter health-care workers continued to check on the couple by phone, sending a nurse to visit them whenever necessary. The Boyds could also call for help or advice when they needed it.
Providing palliative care to patients after they leave the hospital or when a serious illness is diagnosed helps prevent unnecessary hospital visits, reduces patient and caregiver stress and saves money in the long run because patients need less emergency medical care, Thomas said.
The services provided under a palliative care program can vary. However, it generally involves care on multiple levels, from pain management and symptom relief, to counseling, social work services, end-of-life planning and spiritual support. Typically the work is carried out by a team of professionals from different disciplines such as doctors, nurses, social workers, therapists, dietitians, pharmacists and chaplains.
The goal is to go beyond medical treatment of the disease and tend to the physical, emotional, social and spiritual needs of patients and their families so they can live the best life possible, even if there is no hope of a cure and their condition is likely to worsen over time.
There are 189 community-based palliative care programs in the state, a recent survey by The California HealthCare Foundation found. Most of these programs are clinic-based, although 65 involve home-based services, and another 39 provide services across different settings, which could include clinics, nursing homes and patient homes. The programs are spread across 36 counties.
Health-care providers that offer community-based palliative care say they have seen dramatic reductions in emergency-room visits and hospital stays among those they serve. Betsy Gornet, who heads the advanced illness management department at Sutter Health, said the program has seen a 60 percent reduction in hospitalizations among patients enrolled, and a 33 percent decrease in emergency room visits.
At Sharp HealthCare in San Diego, an in-home palliative care program launched in 2007 has reduced hospitalizations and emergency-room visits among the 1,200 patients served annually, said Suzi Johnson, director of hospice and palliative care programs.
“The traditional mindset is, ‘If I get sick, I go to the hospital,’” she said. “That worked 50 years ago … It doesn’t work so well now because people are living to be older and they’re living with chronic illness. We teach people that you never have to go to the hospital with a chronic illness, assuming we can help teach you how to manage your chronic illness.”
Nevertheless, challenges remain. Medicare currently does not cover palliative care, said Kathleen Kerr a health-care consultant for the California HealthCare Foundation. There is also a shortage of qualified palliative care professionals, Thomas said.
“The funding for palliative care is not there yet from a federal level, but I think it will come over time because of the demographics of our population,” Johnson said. “It’s a very solid solution to an aging population that needs more supportive, home-based, coordinated care.”