Palliative treatment scarce

Jose Garcia Flores, 60, listens to Dr. Carin van Zyl as she explains in 2015 that chemotherapy might not be an option to treat his colon cancer.

Doctors can improve the quality of life for their seriously ill patients while also reducing the patients’ medical expenses if they make use of one particular care model, so why aren’t they using it?

The biggest hurdle might well be the words used to describe it, said Dr. Jeanine Ellinwood, who leads a team in the specialized field. People hear them, she said, and think immediately of hospice care.

It’s not. It’s palliative care, she said, and yes, there is a difference.

Hospice care focuses on making people comfortable in their final six months of life. Palliative care, however, aims to relieve the symptoms and stress of serious illness with the goal of improving quality of life, and it functions as an extra layer of support for patients and their families.

“We’re still doing a lot of education of the clinicians that palliative care can occur way before someone chooses a comfort-care approach, which is what hospice support is,” said Ellinwood, the medical director at El Dorado County, Calif.-based Snowline, which offers hospice and supportive care. “The hospice industry did a wonderful job, and we linked it with palliative care and used the lingo for a long time.”

The distinction is critical, Ellinwood, insurers and researchers said, because when a patient goes into hospice, their specialists and physicians typically don’t play as active a role in their care. That’s not true with palliative care, where many patients are depending on their doctors to work aggressively to prolong their lives.

Snowline has played an integral role in keeping Natomas, Calif., resident Christine de Belen-Wilson’s father out of the emergency room, de Belen-Wilson said, but getting her dad’s pulmonologist to give palliative care a try wasn’t easy.

“He didn’t think that my dad, after being in and out of the hospital, needed palliative care,” said de Belen-Wilson, a physician assistant. “It took several attempts to get folks in the medical community to understand that he needs to have the support.”

Servando de Belen has chronic obstructive pulmonary disease, or COPD, so oxygen doesn’t always flow easily through his scarred lungs. His wife, Warlita de Belen, said that, before Snowline entered the picture, her husband was going to the emergency room two to three times a month.

Since the family started working with Snowline, she said, they haven’t had one of those ordeals for about a year.

“It felt like we were alone,” Warlita de Belen said. “It was just Christine who was helping us. Every time I had a problem, I’d call her. We had to bring him to the ER. He had a temperature, or this or that, and here comes Christine. His health has been more stable now.”

More importantly for mother and daughter, they said, they feel as though they are again seeing the man their family knows and loves: the doting grandfather, the talkative card shark, the dedicated gardener and the amateur singer always ready for the karaoke box.

Snowline reviewed the hospital visits for patients in its palliative care program from Jan. 1, 2017, through May 1, 2018. Roughly 200 patients reported an average of 57 ER visits and 59 hospital stays in each of the three months prior to being admitted to Snowline’s palliative care program. Three months after joining Snowline, though, ER visits had dropped to an average of seven per month for those 200 individuals and hospitalizations to an average of one.

What’s even better, those patients reported significant drops in pain, anxiety and nausea after admission.

De Belen-Wilson credits her dad’s success to an interdisciplinary team that actively manages all aspects of its patients’ health. Her family has benefited from Snowline’s social workers, home health aides, chaplains, primary-care providers and nurse case managers. Snowline also offers music therapy and volunteers who provide respite to caregivers.

Provided along with curative treatments, palliative care emphasizes pain and symptom management, care management and coordination, assistance with treatment decisions, and 24-hour-a-day access to the palliative team’s nurses and doctors.

De Belen said she has a high level of trust for Snowline’s team, so her daughter is no longer the first call she makes anymore. The couple have become so much better able to cope, de Belen-Wilson said, that she’s more likely to be upset that her mother didn’t call her.

Because many physicians and patients don’t understand the benefits of palliative care, Snowline and many other support teams have the capacity to take more patients than they are getting. But, if everyone who qualified actually sought placement, there wouldn’t be enough capacity to serve everyone who needs it, according to a 2018 report from the Oakland-based California Health Care Foundation.

The philanthropic group, which works to improve health-care delivery, released data showing community-based palliative-care programs have only enough capacity to meet 33 percent to 51 percent of demand. Community-based palliative teams work in clinics and in patients’ homes.

A lack of uniform standards may be another reason why physicians may not yet understand palliative care, said Kate Meyers, a senior program officer with the California Health Care Foundation. There is a set of standards for hospice that is really predictable, she said, but that’s not the case with palliative care.

“You’ve got tremendous differences in the scope of services, the type of disciplines involved in care delivery, the training those individuals have had,” Meyers said. “Just everything you can imagine, there’s probably a variation on, so it’s entirely possible that maybe a type of palliative care that a particular referring provider was exposed to didn’t align with what they would want for their patients or they didn’t perceive it as helpful because it didn’t match their expectations.”

This will come as the industry matures, Meyers said.