EXECUTIVE SUMMARY

As palliative care gains traction among case managers and others in healthcare, the end-of-life service is filling in gaps in symptom management.

  • Palliative care focuses on pain and symptom control for patients with a serious illness.
  • Unlike hospice care, palliative care can be given to patients who continue to receive curative treatment and who are not necessarily going to die within six months.
  • Once providers learn more about palliative care, they begin to make referrals sooner and more often.

After more than two decades, the concept of palliative care is gaining traction among case managers and other healthcare providers, partly in response to acceptance for this type of end-of-life care under the Affordable Care Act. Advocates of palliative care cite its benefit of filling in gaps in symptom management for patients undergoing procedures at the end of life.

“By 2030, there probably will be nine million Americans who are more than 90 years old, and a huge number will suffer from chronic illnesses with chronic symptoms,” says Abdul Mondul, MD, associate medical director, chief of palliative care services, and patient safety officer at Lincoln Medical and Mental Health Center, New York City Health and Hospitals Corp. in New York City.

Chronically ill patients at the end of life need information about their goals of care, including how healthcare providers can help them alleviate physical, spiritual, and social suffering, Mondul adds.

“It starts from having well-structured referral criteria for patients who need these services,” he explains.

Palliative care focuses on pain and symptom control for patients at any stage of a serious illness. Unlike hospice care, palliative care can be given to patients who continue to receive curative treatment and who are not necessarily expected to die within six months, according to Medicare guidelines.

Case managers and providers, including hospitalists, need education about palliative care, especially when a health system begins to prioritize these services. The idea is to identify patients who would benefit from a palliative care referral or hospice care during admission, Mondul says.

“It helps in decision-making and streamlining and discharge planning,” he adds. “We have set a rule that any patient who enters with heart failure needs to be evaluated by palliative care services.”

An increasing number of health systems provide palliative care consultation teams, Mondul notes.

While palliative care was a difficult service to bill in its early years, now there are Medicare billing codes for it, he adds.

“As we move along with the Affordable Care Act, there will be changes in payments for components like time spent in family meetings, so palliative care teams can use that component,” he says. “The next change will be the pediatric piece: There are pediatric cases that require palliative care, such as when a baby has a genetic problem.”

The shift to palliative care is causing some confusion among case managers, who often are more familiar with the concept of hospice and hospice criteria than they are with palliative care, Mondul says.

Patients, their caregivers, and other members of the public also might be unfamiliar with palliative care, says Mei Kong, RN, MSN, assistant vice president of corporate patient and health safety for New York City Health and Hospitals Corp.

“We encourage patients, advocates, and family members to learn about palliative care,” Kong adds.

The public needs to learn what the benefits are for palliative services, expanding the knowledge beyond those concepts for referral, Mondul says.

“We need to enhance the knowledge of palliative care to get referrals early,” he adds. “We need to educate everyone to what palliative care is and what the benefits are, expanding the knowledge beyond those [traditional] concepts for referral.”

One way to do this is through a palliative care pamphlet that talks about when patients/caregivers should contact palliative care, and what the criteria are, Kong says.

“A booklet teaches patients to speak up about their care,” Kong says. “We hope we’re fostering a healthy relationship and exchanging information.”

Health systems should teach their staff to speak to patients about their disease process and treatment options, she says.

“Have patients tell us what they want, what their articulated goals are,” she says. “Do they want to be cured, live longer, improve their function, or be comfortable?”

At Lincoln Medical and Mental Health Center, each new employee’s orientation includes a presentation about palliative care. Employees learn more through different life care modules, Mondul says. One module is about communication at the end of life, from the last days to the last hours of life.

Nurses also can take the curriculum, tailored with five hours of role-playing, music, companionship, and an art program. A case manager and social worker provide updates and share goals of palliative care with other healthcare professionals, Mondul says.

“It’s so integrated with the rest of the hospital, it’s part of the daily business of Lincoln, penetrating every area, even areas we don’t use for referrals like surgical and emergency room,” he adds. “That partnership works very well for case management; it gives us a heads up, so it’s not a surprise.”

Here’s an example of how it can work: At Lincoln Medical, the mean number of days between hospital admission and referral to palliative care for patients who are appropriate referrals to the services is one day. In 2004, referrals to palliative services typically would occur after a month, Mondul says.

A decade ago, patients would already be dying before they were referred to palliative care, he adds. “That has completely changed over the years — that’s how much everyone is aware.”

Also, about 70% to 75% of the hospital’s patients who die have been evaluated by the palliative care team, he says.

To achieve this level of care transition integration requires support and a multidisciplinary approach, Mondul notes.

“In the beginning, the palliative care program was myself and the chaplain,” he says.

Palliative care transitions typically follow these steps:

  • Advance directives conversation. As early as possible in patients’ care, hospital case managers or other staff can have a discussion about how many invasive procedures the patient would be willing to undergo. They discuss the patient’s comorbidities and diagnoses.

“Some patients will say, ‘I know I’m sick, but if I’m not doing well and get intubated and things don’t look good, then I don’t want to be connected to life support for more than 15 days, 20 days, 7 days,’” Mondul says.

  • Talk with families. Sometimes patients lack advance directives and are already connected to life support. So the conversation has to be with the family. It’s a conversation case managers are well equipped to have, especially when they have experience working with palliative services, he says.

“We keep the mantra of palliative care, which is patient-centeredness,” Mondul says. “All conversation should be around the patient’s known wishes, which is where the conversation starts.”

The palliative care team gives patients’ families enough information about ventilator withdrawal that they can make an informed decision: “There’s a process and way of explaining what to expect and how we keep patients comfortable during that process,” Mondul says.

Palliative teams have experience in guiding families into making decisions based on what the patient’s decision would have been in that situation, he adds.

  • Provide palliative services. Palliative and hospice services are similar. They include options such as music therapy, art therapy, and symptom and pain management.

The other piece is coordination of care. “What case managers and palliative care teams can do is get everyone on the same page,” he says.?Palliative teams work with case managers to coordinate care with surgeons, oncologists, cardiologists, and providers. The goal is to put the separate medical pieces together and treat the patient holistically.

“Listening is the number-one goal,” Mondul says. “A lot of studies show how quickly physicians interrupt patients.”

Doctors and case managers might think they know what the patient wants, but until they ask, this isn’t certain, Kong says.

“We have to communicate and ask patients what they really want and work with the team to make sure we’re all on the same page,” she adds. “It’s an important component.”

  • Support families. Palliative end-of-life services include memorial services for patients who died while in the hospital and one-year follow-up with the families, Mondul says.

Lincoln Medical holds memorial services every three months, inviting all relatives to attend the ceremony, he says.

“We encourage them to talk about their relatives and it’s very touching,” he says. “And we keep providing support for the death of their loved ones for a year.”