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Medical Economics

End-of-life care: The Primary Care Role


By Charlotte Huff

Doctors struggling to ease the symptoms of very ill patients will find that improving financial support for end-of-life care likely will expand the specialty of palliative medicine—described by one physician as still in its “pre-adolescence”—and accelerate its reach beyond hospitals.

That migration into the community is driven in part by recent studies showing that more terminally ill patients could benefit from earlier and better relief of symptoms, says Amy Kelley, MD, associate professor in the department of geriatrics and palliative medicine at Icahn School of Medicine at Mount Sinai in New York City. Meanwhile, changes in reimbursement—some rooted in the Affordable Care Act (ACA)—are more closely aligning the goals of outpatient doctors and hospitals leaders, she says.

Most significantly, Kelley points out, the ACA is spurring a shift away from fee-for-service reimbursement to bundled payments that incentivizes the sort of palliative support that many patients would prefer anyway.

“When we think about seriously ill people who often are quite expensive, everybody agrees that they don’t want to be in the emergency room and they don’t want to come into the hospital,” says Kelley, who coauthored a recent New England Journal of Medicine review article about trends in palliative care. “And now for the first time, the hospitals don’t want them in the hospital either.”

To foster more conversations about end-of-life priorities, the government wants to compensate doctors for some of the time involved. Towards that end it has proposed new billing codes, starting in 2016. ACA-affiliated demonstration projects also are trying out various approaches to end-of-life care, such as the announcement this summer that 141 hospices will be permitted to offer patients curative treatment as well.

While palliative programs frequently are associated with hospitals, helping patients in their own homes will have the biggest payoffs in morale and cost-effectiveness, says Timothy Ihrig, MD, medical director of the palliative care program at Trinity Regional Medical Center in Fort Dodge, Iowa. When Ihrig started offering palliative care at the hospital in 2012, he quickly realized that he was hamstrung by limiting himself to meeting only with hospitalized patients.

Patients would enroll after learning about the program’s potential to ease pain, depression, shortness of breath, and other symptoms, Ihrig says. “Then they would be discharged and we’d have no contact until the next time they came to the hospital,” he says. So within a month or so, Ihrig opened an outpatient palliative clinic that now support about 1,200 patients in the surrounding eight-county region, virtually all of them on the outpatient side.

Cost-quality equation

Unlike hospice, palliative care can begin early in the trajectory of an advanced illness and be provided along with medical treatment. In 2013, 72% of U.S. hospitals reported having a palliative program compared with 25% in 2000, according to the Center to Advance Palliative Care. But significant gaps remain.

One survey of 455 health facilities in South Dakota, published last year, found that only one-third had any individual on site who could provide information about palliative services. Access was even more limited on the outpatient side, with just 14% of 146 general clinics reporting a contact person.

As Ihrig and others can attest, though, opening the palliative door even a crack quickly reveals a yawning need. After Duke University Health System started an outpatient palliative clinic for cancer patients in 2012, it opened a second clinic two years later in response to physician lobbying for patients with other medical conditions, says Anthony Galanos, MD, director of inpatient palliative care at Duke University Hospital.

“All of these folks had patients who had terrible symptoms that needed management,” Galanos says, “as well as patients who had a lot of questions and needed help with navigating goals of care.”

In 2007, San Diego-based Sharp HealthCare implemented an outpatient palliative program called Transitions for its heart failure patients. The program has expanded to cover several additional diagnoses—among them chronic obstructive pulmonary disease, dementia, and geriatric frailty syndrome. Patients are considered candidates if they have one of the requisite diagnoses and a projected life expectancy of six to 24 months, says Daniel Hoefer, MD, Sharp’s chief medical officer for outpatient palliative care and hospice.

While these programs might vary somewhat in their offerings, they’re laser-focused on the larger goal—treating patients where they are, whether in their home, an assisted living facility or a nursing home. Clinical leaders describe a range of services from 24/7 phone consultations to 3 a.m. home visits to other measures so that the patient’s loved one “isn’t stuck calling the ambulance in the middle of the night because they don’t know what else to do,” Kelley says,

In addition, Sharp trains patients and caregivers to be proactive, Hoefer says. “Don’t sit there and wonder if that little bit of swelling is a big deal. Call.”

The interest among outpatient providers stems in part from a growing body of data showing that patients who get earlier palliative support not only experience fewer symptoms but might live longer, says Thomas J. Smith, MD, professor of oncology and director of palliative care for Johns Hopkins Medicine in Baltimore.

One of the most frequently-cited studies, a randomized analysis published in 2010 in the New England Journal of Medicine, found that patients with metastatic lung cancer lived 11.6 months if they were assigned to palliative care shortly after diagnosis compared with 8.9 months if they weren’t.

Smith cites other studies showing similar quality-of-life benefits. In addition, he says, “there’s not a single study that shows concurrent palliative care costs more. And nearly all of them show that concurrent palliative care costs less.”

Smith echoes other palliative care specialists who express substantial unease with introducing dollars and cents into the discussion. “We got into this to relieve symptoms and improve quality of life,” he says.

Expanding palliation

Still, Ihrig acknowledges that it’s no coincidence that Trinity Regional Medical Center began its palliative care program in 2012, the same year that the Fort Dodge hospital became a Pioneer ACO. Given its rural Iowa location, the region has a disproportionately high percentage of residents in their 70s and older. Ihrig’s goal: to prevent patients from bouncing back to the hospital who would prefer to get care elsewhere.

But the bundled payment reimbursement model under the Pioneer Accountable Care Organization (ACO) Model also created a window for experimenting with approaches that might hold down costs, Ihrig says. “The new economy of healthcare is not about fee-for-service and heads on beds,” he says. “It’s about cost avoidance and what amount of that capitation is going to be left at the end of the year.”

By the spring of 2012, Ihrig had hired a part-time nurse practitioner who could check on patients at their homes. In addition, he fields patient calls around the clock, sharing that role with another doctor, to try to intercept concerns and symptoms before they reach a crisis. Ihrig is still compiling data, but says that hospitalizations have dropped dramatically for enrolled patients.

He cites the case of a patient who had been hospitalized 37 times in the two years prior to her enrollment for aspiration pneumonia. She wanted to eat but a combination of medical conditions, along with a prior stroke, had made swallowing difficult. So Ihrig developed a plan with the nursing facility to make sure it has antibiotics and a nebulizer that can be used under Ihrig’s clinical guidance when early symptoms develop

“We treat her right there—that’s what she wants,” Ihrig says. In the last three years, the patient has been hospitalized four times, including once to have her gallbladder removed, he says.

Doctors already know which of their patients are teetering clinically, highly vulnerable to a medical complication or change in life circumstance, Hoefer says. With some exceptions, such as a heart attack, he adds, “most of the time with these patients we know what’s coming. We just let it happen anyway, because we don’t have a system to do anything else.”

Hoefer recalls vividly one of his first patients in Sharp’s Transitions program, a woman in her 80s who was coping with dementia along with heart failure. Her husband was more mentally astute, but physically frailer and suffering from metastatic prostate cancer. “The fact that they were able to stay out of the hospital was only because they could lean upon each other.”

Now outpatient palliative support was available. “They were both managed at home,” Hoefer says. “Neither saw the inside of a hospital.”

Initiating ‘the talk’

Patients will miss out on palliative support, though, unless more doctors are willing to raise the option with someone who might not yet realize that his or her chronic disease is terminal, Hoefer says. It’s easy for time-pressed doctors to stall, and for patients to persist in denial, amidst the veneer of periodic checkups, he says.

“You can understand how that is,” he says. “When patients come into my office short of breath and I `tune them up,’ they may think that the problem’s gone. Or they might think that Dr. Hoefer or my primary care physician or my cardiologist will just keep on doing that indefinitely.”

But Hoefer and other palliative care specialists say that doctors have a responsibility to find out what the patient prefers, whether it’s supportive care at home or aggressive treatment in a hospital, before symptoms snowball into a crisis. To that end, doctors should learn more about the stages of advanced disease, so they can better prognosticate and discuss a patient’s life expectancy, Hoefer says.

Diseases such as advanced heart failure or emphysema or renal failure, “all have prognoses that are not a whole lot different than most solid tumors,” says Smith, of Johns Hopkins. He adds that many doctors already have an innate sense, and recommends that they ask themselves: “Would you be surprised if this person were to die in the next year?”

Just as doctors already have developed a standardized approach to many common discussions, such as prescribing a blood pressure drug, they should develop a script for these far more difficult conversations, Smith says. As a starting point, gauge the patient’s baseline understanding by asking them to describe what’s going on with their medical condition, he suggests. In situations where Smith senses a patient’s resistance to discussing his or her condition and related choices, he might lead off by stating: “I’m worried about you.”

“You have to think about some way to start talking about the things that nobody wants to talk about,” Smith says.

It’s also important to emphasize that palliative care is not hospice, and getting help with symptoms and advanced planning doesn’t preclude medical treatment, says Galanos at Duke University Hospital. Doctors should emphasize that they’ll remain the primary doctor, working alongside palliative care, so that the patient doesn’t feel abandoned, he says.

Patients can be more intuitive and resilient sometimes than doctors give them credit for, Ihrig says. “The biggest ticket question that I ask people and inevitably gives me more information than any diagnostic test I can run, is: `What does your little voice inside your heart tell you?’ Because people know.”