Home-Based Palliative Care Can Improve Quality of Life
Relieving a patient's symptoms and providing support to caregivers is the goal. It's a beneficial program, but cost is a factor.
Cleve Hart of Pollock Pines, California was about to be discharged from the hospital when a social worker suggested that he might benefit from home-based palliative care. At the time, he and his wife, Toni, were unfamiliar with palliative care — an array of supportive services for people with serious illnesses — but they have benefitted greatly from those services for the past three years.
Cleve has been diagnosed with dementia, kidney problems and cancer. A nurse comes to their home once a month to check his vital signs.
"And she makes suggestions — like, if he's not eating well, she suggests things that maybe would increase his appetite," Toni says. "They just try to make him as comfortable as possible."
Meanwhile, Magen Fregoso, a social worker at Snowline Supportive Care in nearby Sacramento, California, has directed the Harts to various resources for financial and other support — for example, a place to get adult diapers at no cost — that make their lives easier.
"They might sound like little things, but they're big things to us, you know?" Toni says.
"I have called many times in the evening and late at night when he's had issues like a fall or being in pain."
For her, just knowing that the palliative care team is available for immediate advice is a huge comfort.
"I have called many times in the evening and late at night when he's had issues like a fall or being in pain," Toni says. "And they right away tell me, 'Yes, you should take him to the hospital,' or 'No, give it a couple hours and see how it goes.' They just counsel with us and that's a great relief for me to know what to do."
That's the goal of home-based palliative care, said Susan Enguídanos, associate professor of gerontology at the Leonard Davis School of Gerontology at the University of Southern California. By relieving a patient's symptoms — pain, shortness of breath, constipation, anxiety and others — and supporting their needs, whether that's meal preparation or grooming or emergency advice, the home-based team makes life better.
Over the past two decades, her research has documented that patients who receive home-based palliative care services have fewer emergency department visits, hospital inpatient days, skilled nursing stays and physician visits than similar patients who do not receive that extra support.
The total cost of their medical care, including the palliative care services, is significantly less; patients report greater satisfaction with their care; and they are more likely to die at home, as per their wishes, than patients in a comparison group.
Nonetheless, home-based palliative care is still not available for most U.S. patients. In an interview with Next Avenue, Enguídanos explained why.
Next Avenue: What is home-based palliative care?
Susan Enguídanos: The vast majority of palliative care is provided in the hospital. That typically happens when a patient has a very serious condition and needs help deciding what kind of care they want or help with pain management. They would only have access to that palliative care team until they are discharged from the hospital. At that point, if they're lucky, they might be referred to an outpatient palliative care clinic.
Home-based palliative care is really the only place for continued access to palliative care unless you have enrolled in hospice because your doctor believes you are in the last six months of life.
What is the difference between hospice and home-based palliative care?
Both hospice and home-based palliative care provide symptom management, psychosocial support, pain control, education and caregiver support to meet a patient's medical, social and spiritual needs.
But they are completely different in this way: Hospice is for people who are actively dying and who do not want to pursue aggressive treatment for their medical problems. Home-based palliative care is for people struggling with a serious illness but who are not actively dying and, in fact, may be undergoing treatment with the goal of recovery.
So every seriously ill person is eligible for home-based palliative care?
Unfortunately, that's not the case. The biggest problem is that Medicare does not pay for home-based palliative care. Because there is no consistent funding, there is no standardization as to what these programs look like or who can receive services.
"The first thing is to check with your insurance company. Just say: 'I am interested in home-based palliative care and can you help me?'"
California is one of the best states in providing home-based palliative care. The big Kaiser Permanente health system here serves a huge number of patients through its program. They know the evidence shows that it is good for patients and it's also good for their bottom line.
Outside of that, things are a little iffy, even in California. Blue Shield of California (one of the biggest private insurers in the state) started paying for home-based palliative care about four years ago. Individuals covered by a Medicaid managed care plan can access the services, and some commercial insurers or medical groups may offer it, but each program looks a little different.
Home-based palliative care is also available in other states, of course, but there's a lot of variation depending on who is providing the services and who is paying for it.
How can a patient or caregiver find out if home-based palliative care is available?
The first thing is to check with your insurance company. Just say: "I am interested in home-based palliative care and can you help me?" The second thing is to ask your doctor. But you should be aware that some physicians have no idea what palliative care is, let alone home-based palliative care. So they might not know how to refer a patient to a program.
If those two steps don't lead to anything, look online to see if there are local providers of home-based palliative care in your community. Here in California, some programs have a cash-pay option for people whose insurance does not cover home-based palliative care. And there are some agencies that have a charity aspect that supports some patients.
Editor’s note: This article was written with the support of a journalism fellowship from The Gerontological Society of America, The Journalists Network on Generations and the Silver Century Foundation.