Interventions to improve quality of life for the seriously ill are often provided haphazardly under current frameworks. Here are five keys for transforming palliative care in your hospital system.
This article first appeared in the January/February 2017 issue of HealthLeaders magazine.
Making the case for providing palliative care isn't the challenge.
The specialty helps patients live not just happier, but also longer lives with their disease—while also reducing costs, University of Pittsburgh Medical Center research shows. As a result, palliative care has caught on. As of 2013, 90% of hospitals with 300 or more beds reported having a palliative care program, as did two-thirds of hospitals with at least 50 beds, according to a study published in the Journal of Palliative Medicine in 2016.
However, despite making inroads into health systems nationwide, palliative care programs often have room for improvement. A 2014 report from the Institute of Medicine called for sweeping changes to strengthen both palliative and end-of-life care nationally.
The IOM committee that produced the report titled Dying in America, noted that patients nationwide often encounter barriers to integrated, person-centered, family-oriented, and consistently accessible care near the end of life. These obstacles include disparities between the services patients and families need and the services they can obtain, barriers in access to care, and "inadequate numbers of palliative care specialists and too little palliative care knowledge among other clinicians who care for individuals with serious advanced illness."
Success key No. 1: Define your objective
To achieve the necessary buy-in to make improvements in all of these areas, organizations must begin with a clear message about what palliative care truly means.
The leading misconception about palliative care—among the public and within the healthcare industry—is that it's synonymous with hospice or end-of-life care. Although hospice and end-of-life programs often include palliative care, this service is not just for the dying.
According to the Center to Advance Palliative Care, "Palliative care is specialized medical care for people with serious illnesses. This type of care is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness—whatever the diagnosis. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses, and other specialists who work with a patient's other doctors to provide an extra layer of support. Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment."
With this understanding comes an imperative for patients to receive palliative care earlier in their disease trajectory. This requires a cultural shift that starts with physicians, according to Mohana Karlekar, MD, medical director of palliative care at Vanderbilt University Medical Center, a collection of several hospitals and clinics, as well as the schools of medicine and nursing associated with Vanderbilt University in Nashville, Tennessee. Combined, among its four hospitals, Vanderbilt is licensed for 1,025 beds.
"When a physician is taking care of a patient and things aren't going well, often he or she will have this angst, and often will avoid these conversations until the last minute," she says.
But experts agree that the earlier palliative care is begun, the better. Research published in the New England Journal of Medicine in 2010, for example, demonstrated that patients with metastatic lung cancer receiving palliative care had better quality of life, less depression, and less aggressive end-of-life care than a control group. They also lived almost three months longer, on average, than the patients who received standard care only.
Success key No. 2: Invest in midcareer training
As noted by the IOM, a top challenge in providing access to high-quality palliative care is an inadequate workforce pipeline, says R. Sean Morrison, MD, director of the Hertzberg Palliative Care Institute at the 1,000-staffed-bed Mount Sinai Hospital in New York City and director of the National Palliative Care Research Center.
"Because we're a relatively new specialty and because of caps in residency and fellowship training programs, there are just not enough specialists to meet the needs of every person with a serious illness in this country," Morrison says.
To manage this shortcoming, Morrison's first recommendation is to use palliative care specialists judiciously, enabling specialists to take care of the most complex cases, lead community-based teams and programs, and conduct research to advance the field.
The other piece of the equation, he says, is to rapidly expand training in core palliative care skills to nonspecialists, thus facilitating a team-based approach to taking care of patients' social, spiritual, and medical needs.
Morrison notes that during the 10 years of his own medical education—right up through fellowship—he received no instruction about pain management or how to tell a patient about a serious diagnosis. "In fact, almost anybody in any profession has gotten as much training as I did about how to tell somebody they have cancer."
Also known as "midcareer training," the concept of improving all clinicians' skills in communication, pain management, and symptom control is critically important, says Diane Meier, MD, FACP, FAAHPM, a professor of geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai in New York City.
Many organizations have formally launched programs to improve palliative care skills and knowledge throughout their organizations. Vanderbilt, for example, created its own curriculum to train midlevel practitioners and nurses in core palliative care skills. The training sessions, often led by Karlekar, involve active role-playing and occur at convenient times during trainees' workdays.
"We're not asking them to do something extra," Karlekar says. "We try to make it as simple and user-friendly as we can make it." The response from trainees has been overwhelmingly positive, she adds, because nurses appreciate obtaining skills they can use immediately at the bedside.
The Center to Advance Palliative Care, which Meier directs, also offers an online curriculum for midcareer training. However, organizational commitment is necessary for success, she says.
"That commitment comes from the very top of those organizations—the CEO, the board—recognizing that, through no fault of their own, medical schools have completely failed to prepare future clinicians with these essential skills and that health systems really have to compensate for that by investing in compensatory training for their staff," she says.
Success key No. 3: Screen for need
After building a competent palliative care team, health systems' next priority should be creation of a consistent and standardized approach for identifying patients and families who would benefit from palliative care, Meier says.
Similar to the way hospitals screen patients on admission for hearing loss or fall risk as a condition of accreditation, they should routinely ask patients about poorly controlled symptoms such as pain or shortness of breath, inquire about caregiver exhaustion, and note red flags such as repeat hospitalizations, she says.
"Anybody who meets one or more of those criteria would benefit from a comprehensive palliative care assessment and appropriate interventions. But right now, we don't screen for those issues, and if you as a patient get palliative care in a hospital, it's because you're lucky. If your treating physician doesn't think about making the referral, you almost certainly will not access the care," says Meier.
Morrison agrees. "My worry is what's happening now is what we call self-triage. We [physicians] are selecting the people that we think are most in need, and those typically are people closer to the end of life with a higher symptom burden," he says. "However, people more upstream can benefit from our services equally, if not more so. So we have to have a more strategic way of identifying who can benefit from what service and getting them into those services."
Done well, such screening can ensure patients receive the right level of care.
Success key No. 4: Spread out
One of the more unique qualities about Vanderbilt's palliative care program is that it stems from the hospital's division of general medicine, which is under the department of medicine. "We are not connected in any formal way to any specific specialty, so the breadth of the different types of patients that we get is different than most programs," Karlekar says.
Oncology referrals account for approximately 15% and heart failure referrals account for approximately 12% of all palliative care referrals at Vanderbilt, with surgical, trauma, burn, stroke, and other serious conditions making up the rest, she says.
"We're embedded in heart failure, so we see people before they get transplants," she adds. "We see a lot of liver patients as well. It's earlier in the trajectory, and it's a much wider population specialty base."
Vanderbilt has run a dedicated inpatient palliative care unit since 2012. There, "we are the primary team taking care of those patients, some of which come in to have their symptoms managed, some of which will not leave the hospital because they're too unstable to get to hospice," Karlekar says. "In some cases, there's some uncertainty about how they're going to do. Maybe they'll go to rehab, but we're not sure."
What's more, the program that began as an inpatient consultative service also provides extensive outpatient services.
Mount Sinai also provides services on an inpatient and outpatient basis, with care teams embedded in certain high-risk programs, including oncology and the intensive care unit. An embedded model for advanced heart failure patients is in the works.
In addition, palliative care is embedded in Mount Sinai's home-based primary care program, while a community palliative program for patients of lower acuity is under development with support from an endowment.
Success key No. 5: Monitor metrics
The metrics that correlate with palliative care success are also more diverse than for other service lines. According to experts, the following benchmarks are the most important to watch:
- Patient satisfaction. "It's critically important to document satisfaction with care and symptom relief," says Morrison. "You want to make sure that people are staying comfortable, that their families are satisfied, and that care is being delivered appropriately in a timely fashion." Moreover, many of these measures, commonly captured by HCAHPS, are also used by Medicare and other payers to assess quality of care," Meier notes.
- Avoidable hospitalizations. In particular, keep an eye out for emergency department visits that occur outside typical business hours, says Morrison. "Unless you have 24/7 support and can take care of people after hours, you're not doing as well as you could be."
- Time from admission to palliative care service delivery. "There are now a number of studies showing that if you receive palliative care within the first 48-72 hours after being admitted to the hospital, it has a much larger impact on how you do and how quickly you get out," says Meier. "Any later than that, a lot of damage has already been done."
- Penetration rate. This measures the percentage of annual admissions to your hospital that are served by your palliative care team. According to the National Palliative Care Registry, palliative care service penetration has increased by 78% since 2009, from a mean 2.2% in 2009 to 3.9% in 2009. Some better-performing hospitals have penetration rates as high as 10%, Meier notes. "It's a measure that tells a hospital or health system, 'Okay, you've invested in this service. You're paying salaries of X number of people. This is how well they're actually reaching people in need,' " she says.
- 30-day readmissions and hospital mortality. Both of these figures are markedly reduced among patients who've received palliative care, says Meier, adding that hospitals are also held accountable for these metrics under Medicare. "To the extent that a hospital could stand to improve on those—as most could—a well-staffed, adequately capable palliative care team and broad midcareer clinician training is probably the most effective thing hospital leadership can do to reduce penalties."
Debra Shute is the Senior Physicians Editor for HealthLeaders Media.