The 52-year-old woman came to Yolo Hospice early this year with pneumonia. She likely wouldn’t survive the illness, her doctors said, due to a malformation of her trachea.
But as a team of nurses and social workers cared for her, she rebounded, becoming more alert and regaining her strength and appetite. As her condition improved, her caregivers gave her a choice: treatment options that could improve her quality of life or the hospice services that would support her as she died.
After a consultation with Yolo Hospice, she left hospice care to see a specialist. Once at home, her condition quickly deteriorated and she died just a few days after her release, before she could even see a specialist.
“She died, and we were not there then to help her, because she was not on our services anymore,” said Leah Morris, a nurse practitioner with Yolo Hospice, who shared the story of the woman. “It was just so heartbreaking for everyone involved in that situation.”
If there had been an outpatient palliative care program available, the woman could have held on to the services that were helping her — such as pain management and emotional support — and also sought other medical treatment.
Palliative care, which is medical care that aims to improve the quality of life for people with chronic or serious illnesses, is not widely available in California. A new law, SB 1004, passed by the Legislature last August, directs the state to create a palliative care program for people enrolled in Medi-Cal, California’s low-income health plan. Nearly a third of Californians — about 12.3 million people — are enrolled in Medi-Cal.
Advocates hope the law will open the gates to palliative care for all Californians, including those with private insurance.
A slow process
State officials held a meeting in June to provide an update on the process of implementing a palliative care program. The Department of Health Care Services, which operates Medi-Cal, is chipping away at ideas for the program and ways to measure the effectiveness of it, and expects to release draft guidelines this summer, spokesman Anthony Cava said.
“We will work with stakeholders on the final design for the initial guidance, hopefully to be released this fall,” he said.
While some palliative care advocates and the people they represent are upset that the process is taking so long, it’s important that the program be well thought out, said Judy Thomas, CEO of the Coalition for Compassionate Care of California, who attended the meeting and is working with the department to create the guidelines.
“I know some providers are kind of frustrated and feel like things could move faster,” she said. “I feel like there’s a tension there, but we’d rather have something that’s thoughtful and makes practical sense than have something that’s rushed or sets up goals that can’t be met.”
The department is also working with the California HealthCare Foundation to create the program. In a February report, the foundation estimated that about 185,000 Californians in the last year of their lives could benefit from palliative care each year. But, statewide, inpatient palliative care programs only have the capacity to help about 39 percent of those people, and outpatient programs can see only 29 percent.
In addition, an even greater number of people with chronic or serious illnesses could benefit from palliative care before the last year of their life, Thomas said.
A better quality of life
Palliative care, which can be offered both in the hospital and outside it, can take many forms, but it typically involves a team of doctors, nurses, social workers and other health professionals who help patients cope with their symptoms and explore other treatments. Palliative care teams also help the patient’s family understand the illness and how to best support the patient.
People with cancer, cardiac disease, chronic obstructive pulmonary disease, kidney failure, Alzheimer’s, Parkinson’s, Amyotrophic Lateral Sclerosis and diabetes can often benefit from palliative care.
Palliative doctors and nurses can help with pain management, fatigue, nausea, depression and a host of other symptoms. Social workers and therapists can encourage patients to carry on with their daily activities, perhaps by finding modifications that work for them. For example, patients that can no longer drive can get help finding transportation to doctor’s appointments.
Although they share some similarities, hospice is not palliative care. Hospice is designed for people with six months or less to live, who are no longer seeking curative treatments. Palliative care patients, by contrast, may have decades of life left, and want to explore other forms of treatment.
Medi-Cal health plans’ palliative care offerings vary widely, according to a survey the state conducted in May. While some of the health plans said they had education programs in place to help physicians have end-of-life discussions with patients, at least one said it had no such offerings.
The survey, however, is not comprehensive. Only seven of the 22 managed care plans that the agency contracts with to deliver Medi-Cal responded to the survey.
At least one health plan, Partnership HealthPlan of California, is working on a palliative care pilot program in Yolo County. Morris hopes some of her patients will finally get to enroll.
“I think there’s a lot of care that people are receiving that isn’t necessarily the care they wanted,” she said. “An example is a patient who has an event at 10 at night, maybe it’s chest pain or a panic attack and they become frightened and concerned. The health care system directs you to emergency room, but for the most part, people with a chronic illness don’t really want to be going to the emergency room and sit there. Palliative care can help them stay comfortable in their home.
“That’s where I see this having a great benefit to people.”
Once the state has released the program guidelines, there may still be hurdles to providing palliative care more broadly, said Helen McNeal, executive director of the CSU Institute for Palliative Care.
“Educating the workforce needed is one of the challenges that I think everyone agrees is an issue,” she said. “The fact of the matter is, we don’t have the trained workforce that we need in order to deliver great palliative care to everyone who needs it.”
McNeal’s organization works to train health professionals to deliver palliative care. Since the institute’s inception two years ago, it has trained more than 1,000 health professionals. The goal is to train 900 next year, she said.
The push to train more health workers is more than a professional cause for McNeal, who herself has had difficulty accessing palliative care for malignant melanoma that was successfully removed.
With the help of a palliative care team, she opted to get PET scans every six months to check for any recurrence of the cancer instead of doing intensive chemotherapy.
Although she estimates her decision saved her insurance company tens of thousands, it has refused to cover the scan she was due to have four months ago.
“I’m still fighting it,” she said. “This just highlights the need for palliative care and having the insurance companies understand the choices people make, even if they don’t fit in the code book neatly.”
Despite the insurance battles, McNeal said she’s thankful she’s pursued the treatment that’s right for her.
“I’ve got no regrets about my decision, because I’ve got quality of life, and that’s part of what palliative care helps people to have.”