Dr. Robert Fine has a story he tells to serve a pair of purposes: One, it illustrates how the palliative care program he leads at Baylor differs from hospice care. Two, it shows how new the specialty is, so fresh that a real-life incident can modify the specialty itself.
Palliative care is an end-of-life support program that designs a personalized treatment strategy to help the patient live out their waning months or years how they want to. It also extends to the family members, offering social workers and chaplains as resources to help process losing a loved one.
Which brings Dr. Fine to that story. It began like many other palliative care cases he handles at Baylor Medical Center, even if the details were more tragic than usual. A 35-year-old patient was terminally ill with cancer. His oncologist called Fine to discuss treatment options to make the final days a bit more bearable. The man hadn’t been told the prognosis.
The oncologist, tied up in the clinic, asked Fine to tell the man that his cancer was going to kill him. Fine agreed and sat down with him. This is part of the program after all, making sure the patient understands that palliative care isn’t likely to cure what ails them. It is a way to manage symptoms that accompany disease or treatment to help the individual live the rest of his or her life in comfort, often beyond the confines of the hospital in their own homes.
And so Fine told him: “I said, ‘listen, may I be honest with you?’ And he said, ‘Yes.’ I said, ‘you’re going to die from this and I’m concerned it’s going to be sooner rather than later. I’m so sorry to be the one to tell you that.’”
But the man said thank you. And then he asked for Fine to tell his children, ages 8 and 10.
“You know, I’m an adult doctor. I didn’t train in pediatrics. I’m a nice guy. I have kids. And I’m going OK,” he says, stretching out that vowel sound. “I probably emotionally lost it a little bit and tearfully told them, ‘I’m so sorry, but your daddy is going to die in the next few days.’ I resolved after that, this is nuts. How do we say we support patients and families if we don’t support children?”
Last month, Fine traveled to San Diego to accept the American Hospital Association’s Circle of Life Award, which recognized Baylor Healthcare System’s Supportive and Palliative Care program as one of the nation’s three best. And one of the reasons it won that award was what came out of that story.
Fine enlisted therapists from Baylor’s Our Children’s House who began volunteering in the palliative process, helping tell children in a supportive way that their parent or grandparent or sibling is gravely ill. After a year, Our Children’s House higher ups ordered the volunteering stopped: “They said, I’m really sorry, but unless you can pay their salary, you can’t keep stealing them to come over to Baylor.”
Palliative care child life specialists are now stationed at Baylor facilities downtown, in Fort Worth, and in Plano. Fine can’t recall another adult hospital system that offers that service in Texas.
Part of the reason this pivot was necessary is that palliative care is a nascent specialty. The American Board of Medical Specialties started offering a certification exam in 2008, according to the Center to Advance Palliative Care.
Fine says there are only about 3,000 board-certified palliative care specialists. There are around 237 graduates each year. “It’s huge training challenge,” he says. “There really is a whole extra skill set in what we do.”
A palliative care team is made up of a doctor, nurse practitioners, social workers, and chaplains. This setup is inherently difficult for reimbursements. There’s not a code for an hour of intensive discussion, says Dr. Amy Kelley, an assistant professor of Geriatrics and Palliative Medicine at Mount Sinai Hospital in New York.
“We teach them the skills involved in a difficult conversation, we practice those skills and observe them doing it,” Kelley said. “There should also be a procedure code for when they use that higher level of skill and spend an hour with the family teething out what’s most important to them and put together a treatment plan that meets that person’s priorities.”
Palliative care, value speaking, is about the long game. But it has been proven to lessen the costs involved in long-term care. According to a study published earlier this year in the American Cancer Society’s CA journal, palliative care applied quickly after diagnosis was associated “with significantly fewer ED visits, hospital admissions, hospital deaths, and ICU admissions.”
“Patients who were referred to palliative care earlier and as outpatients had better end-of-life care compared with those referred later or as inpatients,” the study read.
Last year, Baylor saw about 4,200 patients. Between 2004 and 2010, the system saw an average of 450 a year. That increase came after changing its name to include the support angle and escape the shadow of hospice care.
“They think, isn’t that just hospice care?” No,” Fine says, “it fills the space between acute aggressive treatment and hospice and can be simultaneous with a treatment.”
Perhaps the largest obstacle facing palliative care is awareness. According to a 2011 study published by the Center to Advance Palliative Care, 70 percent of U.S. adults were unaware of the service. And once they learned about it, roughly the same amount said they thought it was vital for end of life care.
Doctors who practice it, meanwhile, are hopeful that the shift from fee-for-volume to fee-for-value will boost the importance of palliative care. Studies have shown that a 300-bed hospital can save $1.3 million on pharmacy, lab, and intensive care costs with an effective palliative care program. Baylor has cut its Medicare costs by between 20 and 25 percent, which Fine attributes to the program.
“This is about spending a little time together trying to understand the individualized goals for that person,” Kelley said. “We can step back and look at the different medical options and say if the most important thing is to have some time at home and you’re not in pain and you’re with your kids, well, we can’t change that you’re going to die from cancer. But we can change this chemotherapy to another one so you can get out of the hospital.”