LOS ANGELES — The good news is that palliative care is more available than it used to be in hospitals and community settings statewide and in Los Angeles County. The bad news is that demand exceeds supply, according to a recent report from the California HealthCare Foundation, which publishes California Healthline.
Palliative care is specialized medical care for people with serious illnesses. The goal is to provide patients with relief from symptoms and stress and to improve quality of life for both the patient and their family.
It can be delivered in any setting and is appropriate at any stage of illness, experts say, regardless of prognosis. It is most often offered concurrently with disease-focused treatments. Palliative care has been shown to decrease symptoms, improve quality of life and even improve survival.
The CHCF-funded palliative care report identified inpatient palliative care services available to hospitalized patients. It also inventoried community-based palliative care provided in clinics, patient homes and over the phone.
The report estimated need for palliative care in each California county among individuals in their last year of life. In Los Angeles County, with the population hovering at 9.8 million and about 57,735 residents dying each year, approximately 46,012 individuals will need palliative care in a given year, according to the estimate. A shortage clearly exists when annual inpatient palliative care capacity is 21,261, and annual community-based capacity stands at 21,228.
“Some 46,000 individuals are likely to need palliative care in the last year of life, and yet less than half of that need is met in both the inpatient and community-based settings,” said the report’s lead author, Kathleen Kerr of Kerr Healthcare Analytics. “There is an equal need for both types of services among individuals in that last year of life.”
Without support from palliative care teams, people with serious illness risk receiving care that is not aligned with their goals, preferences and values, advocates say. This disconnect is indicative of poor quality and can inflate the cost of health care, said Kerr.
The Dartmouth Atlas of Healthcare looked at intensity of care during the last six months and last two months of life in select regions of the country. Judy Thomas, CEO of the not-for-profit Coalition for Compassionate Care of California, said “Los Angeles really stood out as a community that provides very intensive care, but outcomes are not any better.”
When asked why, Thomas said “nobody really knows for sure. Some people think it’s because of cultural diversity — and often studies show that the more ICU beds you have, the more they get used.”
In the past two years, the county has shown a desire to lead the state in palliative care with more innovation, she said, and “not just to catch up with the rest of the state.”
Time May Be Right for Change
One reason why the demand exceeds the supply of palliative care is the historical disconnect between the quality advantages associated with that care and the fiscal realities of how providers and systems have been compensated, Kerr said.
“Everybody has a consistent clinical-moral imperative to provide palliative care, but variables that make it affordable to do so have differed from health system to health system,” she said. “For example, an academic medical center that provides a lot of specialty care will face one set of opportunities and challenges, a safety-net hospital will have another view, and an integrated health system will be in an entirely different position.”
Under the Affordable Care Act, changes in the way health care is delivered and paid for are creating a strong business case for a wider range of entities to offer community-based palliative care services.
Perhaps it’s just a matter of time, Kerr said. “Much of this is relatively new, with a shift in paying for value occurring as opposed to paying for quantity. Throughout our state, payers and providers are exploring new ways of working together so that more people who need palliative care can get it,” she said.
In an effort to facilitate this trend, CHCF funded a project that supported 10 dyads of payers and providers seeking to develop new models for delivering community-based palliative care. Payer WellPoint and provider UCLA Medical Center comprise one participating team.
“Their partnership illustrates how an academic, world-class health care delivery system can incorporate community-based palliative care into the range of other best-in-class services they provide,” said Kerr.
“This is one of those really good news kinds of stories,” said Neil Wenger, a primary care physician and leader of the advanced care planning and services initiative at UCLA. “It ensures awareness of disease progression and early discussion about patient goals and preferences concerning future health status.”
The program began with one oncologist and now has five, he said. It adds an extra layer of care with a specially trained palliative nurse practitioner who also works with the oncologist and palliative care doctor.
“She initiates conversations about what a patient may want, and over time as the patient develops greater burden of disease, she establishes continuity in the patient-provider relationship,” Wenger said.
Medi-Cal Bill ‘Validated’ Palliative Care
Last fall, Gov. Jerry Brown (D) signed SB 1004, requiring the Department of Health Care Services to establish standards and provide technical assistance to managed care plans to ensure delivery of palliative care services to Medi-Cal beneficiaries.
“The message was clear,” Kerr said. “As a matter of justice, Medi-Cal beneficiaries deserve access to palliative care the way everyone has it.”
“This bill really validated palliative care as being a legitimate medical specialty, like cardiology,” said CHCF senior communications officer Emma Dugas.
Recognition and validation have not come easily. “America has a specific culture problem coping with serious illness because of our national can-do, pioneer spirit,” said Pamelyn Close, associate director of clinical medicine and pediatrics and director of the Adult and Pediatric Palliative Care team at LAC+USC Medical Center, one of LA County’s three safety-net hospitals.
“We have, as a culture, the belief that if we work hard enough, fight hard enough and throw enough technology — and sometimes, money — at a problem, we can fix almost anything,” she said. “Health problems are no exception.”
Medicine and technology cannot change the fact that humans are mortal, said Close. “We all die. We need to try to find a way to bridge the culture problem and the reality. We need new language and new approaches to working with patients, doctors and the grassroots community to find effective, more humane ways to effectively provide care for serious illness and end-of-life,” she said.
CHCF provides expert support to public hospitals to help document the impact of what they can do in the palliative care outpatient setting, Close said. “Analysis of patient care outcomes and fiscal impact will help us justify the costs of expanding outpatient palliative care resources,” she said.
Support Key in Palliative Care
Development of palliative care services has faced fewer obstacles in integrated systems such as the Veterans Health Administration or Kaiser Permanente, Kerr said. Both maintain a structure in which clinical-moral and business-financial imperatives are already aligned, and both lead the way in providing palliative care. Integrated systems “have always been about population health or what we can do to take care of a group of people in the best way,” she said.
A landmark randomized trial of community-based palliative care conducted at Kaiser found increased patient satisfaction and reduced use of the most expensive health care resources.
“Just like people don’t like the ‘h word’ [hospice], some don’t like the ‘p word’ [palliative],” said Nancy Gibbs, former regional lead for geriatric and palliative medicine for Kaiser Southern California and now at the system’s Baldwin Park Medical Center. “We’re actually having a debate right now about whether we should change the name to something like ‘supportive care.’ Whatever it’s called, I’m passionate about this. Supportive care is a big part of what we do in palliative medicine.”
At least half of Kaiser’s medical centers have outpatient clinic-based palliative care, and the rest are in the process of building the capacity to have it.
“When people are diagnosed with something really bad, they need to talk to someone about how to manage symptoms and make plans for how to deal with them,” Gibbs said.
The 23-campus California State University system, which estimates it graduates 15% of the entire health care workforce in the United States, maintains three campuses in L.A. County. At CSU’s Institute for Palliative Care in San Marcos, executive director Helen McNeal said getting started early — at the point of diagnosis — with palliative care is important.
“The demand is huge, and health organizations that invest can see a strong return on those investments, both financially and in patient satisfaction,” McNeal said. “While conservative, the data in the foundation’s report makes it very clear what many of us in the field of palliative care have known for a long time,” she added.
McNeal hopes the data will spur investment in palliative care capacity and in workforce development, as well as in recognition by health systems of the value of palliative care.