Palliative Care: Filling a Gap in the System
Eighty-eight-year-old Frank Dore was fading quickly. Hospitalized three times in three months, in and out of hospice, he now found himself back at home, surrounded by pill bottles and paperwork. Weary of traveling to medical appointments and overwhelmed by special diets and other complex instructions, the retired aerospace engineer finally said, "Enough!" He would spend no more energy on health care.
His daughter, Katie Cho, was alarmed. "What was I supposed to do now?" Mrs. Cho wondered. "My father is the smartest person I know, so I wasn’t going to argue with him, but he was getting very frail." Inquiries led her to the Palo Alto Medical Foundation’s new Outpatient Palliative Care Program.
For the next six months, a team of palliative care experts—a specialty physician, nurse practitioner, social worker, care coordinators—met weekly and worked closely with Mr. Dore’s own physicians to improve the quality of his life on his own terms. Best of all, Rachel Mann, a PAMF nurse practitioner trained in palliative care, visited him regularly at home.
With guidance, Rachel monitored Mr. Dore’s weight and fluid retention, adjusted his medications, recommended sleep aids - "whatever it took to make him comfortable. They really hit it off," Mrs. Cho says.
"The best part was, she respected his decisions, so she brought everything to him. He only left home to do something fun like go to a restaurant." Soon, Mr. Dore’s health improved.
Such an outcome brings great satisfaction to Sharon Tapper, M.D., the Santa Cruz internal medicine physician who led the program’s creation and currently directs the palliative care program for PAMF. Dr. Tapper is also a cancer survivor.
"I know firsthand how difficult illness can be," she says. "I wasn’t ill enough to be hospitalized and I didn’t require hospice care, but at the time there was nothing in between. Filling that gap became my passion."
Today, while many hospitals offer palliative care for their patients, those patients who are not in the hospital must manage their own symptoms, drugs and documents; make difficult treatment choices; and deal with psychosocial issues without professional assistance. Often the burden falls to family members who feel no better prepared than the patient.
In the Outpatient Palliative Care Program, health care professionals partner with the patient and family to provide extra support for quality of life during a serious illness such as cancer, dementia or organ failure. Care is seamless; the team goes wherever the patient moves: to a nursing home, hospital or back home.
"This is only possible because of philanthropy," Dr. Tapper says. "Palliative care is time-intensive and largely unreimbursed by insurance." To launch the program, she helped the community raise $550,000, including a $250,000 matching grant from Sutter Health.
The launch took place in Santa Cruz in 2011. Two years later, PAMF has palliative care teams in Palo Alto, Mountain View and, starting in 2014, the East Bay. Once the program is fully operational, it will serve upwards of 1,000 patients at a time. Moreover, the idea has national potential.
Dr. Tapper’s work led to her selection as one of 73 (out of 900 applicants) Innovation Advisors to the Centers for Medicare and Medicaid Services. This year-long training has deepened her ability to design and implement programs like this one that improve patient care and reduce costs. In addition, she is working on a project to capture patients’ goals and wishes in the electronic health record system.
Meanwhile, the PAMF Palliative Care Program has helped 500 patients in the past year, including a single mother in her 30s coping with breast cancer and a young man who relied on palliative care to help him overcome alcoholism. Most participants are elderly, like Mr. Dore.
Today he is back in hospice. Rachel stays in touch. His daughter is grateful and hopeful: "I honestly wouldn’t be surprised if he graduated out of hospice again." His PAMF palliative care team will be ready when he does.