Gloria Romaine has advanced, inoperable cancer, but hospice was never a consideration for the 61-year-old San Leandro woman.
Romaine is not ready for an end-of-life strategy. She’s actively fighting her cancer and wants help managing her pain.
When her doctors at Oakland’s Highland Hospital mentioned palliative care, Romaine had never heard of it.
“I was thinking, is this like hospice? But this is just a team of people who are there for you,” she said.
Romaine, who has gynecological cancer, is now in long-term care at Fairmont Hospital in San Leandro but hopes to go home soon. She is undergoing chemotherapy and is in physical therapy, and considers the palliative team’s help a key part of her line of attack.
“You have friends and family, you have prayers, you have modern medicine, and thank God, I have palliative care,” she said.
Palliative care, relatively new as a medical specialty, focuses on reducing pain and improving the quality of life for people of all ages with serious, chronic and life-threatening illnesses.
Concept unknown to many
Though the concept is not new, the term “palliative care” remains somewhat obscure: A 2011 national poll showed 86 percent of Americans were familiar with hospice care, but only 24 percent said they had even heard of palliative care.
To cover hospice services, Medicare and insurers typically require that patients have a terminal illness from which they are expected to die within six months and agree to forgo curative treatments. Patients can always drop out of the program to pursue aggressive care, but they will lose the services hospice provides.
Patients seeking non-hospice palliative care don’t have to make such difficult choices. They may or may not have a life-limiting illness, but it must be serious or complex enough to need the attention of a team of doctors, nurses, social workers and often spiritual counselors to help manage the pain and symptoms of the disease.
“Our job is to manage pain – whether it’s spiritual, social or physical,” said the Rev. Betty Clark, chaplain for Alameda County Medical Center’s palliative care team, who visits patients three days a week.
The catch is that patients have to live in an area where the local hospitals offer palliative services. Fortunately for those who need those services, that is a growing option.
Approach grows in popularity
In the late 1980s, just a handful of U.S. hospitals provided palliative services. The number has increased from 600 hospitals in 2000 to more than 1,600, according to the Center to Advance Palliative Care.
Even so, palliative services are still concentrated in large, private or academic hospitals. About 81 percent of hospitals with 300 beds or more had palliative care available to patients, while less than a quarter of those with 50 beds or fewer had such services, according to the group’s 2010 statistics.
At public hospitals, which treat the indigent and uninsured, palliative care is a relative newcomer.
In 2006, just four of California’s 17 acute-care public hospitals offered palliative care services, according to the California HealthCare Foundation, a health philanthropy in Oakland. In 2008, the foundation, with the help of UCSF and the California Health Care Safety Net Institute, committed $3.2 million over four years to expand palliative care in public hospitals. Now all the state’s safety-net hospitals have the service available to patients.
In Alameda County, a $75,000 grant helped the county’s hospital expand its existing program to become fully staffed for the first time last year. The team now includes a more-than-full-time physician position that is shared, a full-time social worker, a physician’s assistant and a chaplain.
Dr. Sheira Freedman, Alameda County Medical Center’s director of palliative services, said patients are relieved to have their pain and other aspects of their care addressed in a comprehensive, coordinated way.
“We represent time and presence as well as expertise, and sometimes that makes more of a difference than anything we can order,” she said.
Expansion sought at Highland
Oakland’s Highland Hospital, as well as most other medical centers, is hoping to expand palliative care outside the hospital to doctors’ offices or even patients’ homes. Only about 8 percent of California hospitals offer palliative care as an outpatient service.
Large hospital systems like Kaiser Permanente and Veterans Health Administration have inpatient and outpatient palliative care services, although outpatient services are not available at every Kaiser center.
Even though palliative care can be time-intensive, it’s considered much less costly than multiple emergency department visits or hospital stays.
“By seeing patients so often, we are able to treat symptoms early, detect infection and help prevent them from going into the ER or the hospital,” said Dr. Russ Granich, chief of palliative care and medical director of home health and hospice for Kaiser South San Francisco. “If you give really good quality care, it’s cheaper.”
Better quality of life
Studies show palliative care translates into better outcomes. A 2010 study in the New England Journal of Medicine found that lung cancer patients who received early palliative care experienced less depression, improved quality of life and survived 2.7 months longer than those who received standard treatment.
UCSF Medical Center has one of the oldest outpatient palliative care programs, called the Symptom Management Service, which started about a decade ago. UCSF is piloting an extension of these services specifically for heart patients.
Dr. Steven Pantilat, director of UCSF’s palliative care program, said the center’s palliative service has done more than 800 new patient consultations in the past year and saw a 30 percent growth over the previous year. He said UCSF’s program bills private and public insurers for time and care, like any other medical service.
But he said the important aspects of the program can’t really be measured.
“You can see people’s pain get better and their anxiety go down,” Pantilat said. “It really is remarkable – not surprising – but wonderful to see. When you really address all those issues, people can find peace and find healing, even if their disease is not cured.”
Another layer of support
What is palliative care? It’s a medical field that focuses on relieving the pain and suffering of patients with serious illnesses. The care is provided by a team of doctors, nurses, and other specialists who work with a patient’s other doctors and offer another layer of support.
Who can benefit from palliative services? Palliative care is appropriate at any age and at any stage in a serious illness.
How does it differ from hospice? Hospice programs provide end-of-life palliative care, but palliative care is not hospice. Patients in palliative care can continue to receive medical attention aimed at treating or even curing their disease. Those in hospice are limited to treatments that help symptoms and reduce pain. A doctor must confirm the patient has less than six months to live for hospice care to be paid for by most government and private insurers.
For more information: Center to Advance Palliative Care, www.capc.org.
Edited on June 11, 2018.