When Janna Woods was diagnosed with ovarian cancer last May, the Cupertino resident was unsure how she could possibly cope with the chronic back pain that had plagued her for years, combined with the onset of cancer pain.
“Chronic pain is such a debilitating condition,” Woods says. “While I had been seeing a wonderful pain doctor in Santa Cruz, I knew I wouldn’t be able to continue making the forty minute commute to his office while undergoing chemo.”
Fortunately, a friend told Woods about the new Palliative Care Center Silicon Valley (PCCSV) in San Jose. The first independent, community-based, licensed outpatient palliative care center in California, the center, a division of Hospice of the Valley, opened its doors to the public in July 2013.
“Palliative medicine offers a different model of care, focusing on a patient’s relief and prevention of suffering,” says Sally Adelus, president and CEO of Hospice of the Valley. “Our multidisciplinary team of doctors, nurses, social workers and other staff work to support the physical and emotional needs of seriously ill patients and their families.”
While most palliative care programs are offered in hospitals, PCCSV provides outpatient care for patients with serious illnesses such as congestive heart failure, chronic obstructive pulmonary disease (COPD), cancer, kidney failure, and Alzheimer’s disease. PCCSV services include pain and symptom management, emotional and practical support, counseling to help adjust to life with a serious illness, and complementary therapies including Reiki and massage.
The center contracts with most insurance providers and Medicare, and patients without insurance are given the option of paying on a sliding-scale basis. As a nonprofit organization, PCCSV also relies on community fundraising.
Two months after her cancer diagnosis, Woods met with Dr. Rakhi Yadav, medical director for the PCCSV, to formulate a treatment plan for her chronic pain.
“My first appointment with Dr. Yadav lasted two hours,” says Woods who recently learned her cancer is in remission. “She was very thorough and followed up with me through phone calls and appointments to ensure I was getting the right mix of therapies to keep my pain under control.”
For the thousands of Californians like Woods who are living with chronic illnesses, palliative care services offer tangible relief. Often called “care that goes beyond cure,” palliative care services are on the rise across California and the rest of the country, as healthcare professionals focus on supporting the best possible quality of life for the patient and their family, regardless of prognosis.
In April, the Berkeley Forum, a task force of private and public sector health care leaders convened by UC Berkeley’s School of Public Health, cited the development of community-based outpatient palliative care as one of the three most important initiatives necessary for improving the quality and cost-effectiveness of medical care in California.
“Palliative care, combined with standard curative care, has been shown to improve symptoms and quality of life for patients with serious illnesses,” says Dr. Neil Slatkin, chief medical officer for Hospice of the Valley, who says palliative care should not be confused with hospice or end-of-life care. “Our hope is that we can begin to see patients at an earlier stage in their illness so they don’t have to suffer needlessly from pain and discomfort.”
As an example, Slatkin cites a recent case where he consulted with an older cancer patient who had just been diagnosed with a neurological condition.
“In treating her, I took into consideration the symptoms and side effects she was already experiencing with cancer, and this led to a very good functional outcome,” Slatkin says. “It also permitted us to get into a discussion about her goals of care and advance directives.”
Palliative care services can also be a lifesaver for seniors who are trying to navigate a complex medical system, and may have various medical conditions and different medical teams involved with their care.
Kathie West, of San Jose, found out about PCCSV, when her mother, Connie, became seriously ill last year.
“My mom suffered from COPD and also had cardiac problems and other health issues,” West says. “She was seeing numerous doctors and taking different medications and it all became very confusing for her.”
At the PCCSV, West found support and guidance for both she and her mother.
“When my mother’s condition became worse, Dr. Yadav and the staff were able to help her remain comfortable in her home,” West says. “As her primary caregiver, I also received support from the center’s volunteers who provided respite care, allowing me to run errands or take a break, knowing my mom was in good hands.”
In addition to PCCSV opening the state’s first outpatient palliative care center, nurses at five University of California medical centers –UC Davis, UC Irvine, UCLA, UC San Diego and UCSF – are being trained on how to integrate palliative care into their existing Intensive Care Unit (ICU) plans, thanks to a two-year $1 million grant funded by the UC system.
“Palliative care isn’t routinely involved in the care of patients in the ICU,” says Kathleen Puntillo, professor of nursing, emeritus, in the Department of Physiological Nursing at UCSF. As a co-investigator, Puntillo is working with the grant’s principal investigator, Dr. Wendy Anderson and co-investigator, Dr. Steven Pantilat, of the UCSF School of Medicine.
In April, the UCSF team invited nurse leaders from each of the five medical centers to take part in a three-day training at UCSF, that covered topics such as nurses’ roles and responsibilities in palliative care, use of empathy, and how to deal with conflict with a patient’s family. In June, Puntillo and Anderson began visits to the five UC medical centers to oversee and support the nurse leaders as they began training bedside nurses. The program plans to train 600 bedside nurses over the next two years and to put systems in place that expand the practice of palliative care.
Although ICU nurses are first being trained in palliative care, Puntillo notes that nurses in other units and even hospitals outside the UC system, have expressed an interest in the training.
“Palliative care benefits both patients and families by focusing on aligning goals of care consistent with patient’s wishes, which often have to be ascertained from families,” Puntillo says. “The belief is that patients and families can feel better about decisions, while also giving patients relief from distressing symptoms spiritual support, and more open communication with families and health care professionals.”