The move to better follow patients wherever they may be — in the hospital, at home, in a nursing facility — is vital for those with serious illnesses whose conditions can change quickly and whose care, if handled clumsily, can be frustrating and costly. Fortunately, there are innovative health care organizations leading the way in truly coordinating the care of the sickest patients.
Some of these programs are honored in the 2016 Circle of Life Awards for innovation in palliative and end-of-life care. They include the multidisciplinary palliative care team of Susquehanna Health, whose members venture into the Allegheny Mountains of Pennsylvania to reach dying patients in their homes; Virginia's Bon Secours Richmond Health System, whose palliative medicine team is based out of its medical group, giving it flexibility to move seamlessly across the continuum; and the Cambia Palliative Care Center of Excellence, a distinctive umbrella organization that supports high-quality, consistent palliative care across the University of Washington’s health system in the Seattle area.
Susquehanna Health, Williamsport, Pa.
Williamsport is a small city nestled in the rural, forested part of north-central Pennsylvania, sitting at the foot of the Allegheny Mountains. Susquehanna Health, the local hospital system, offers palliative care provided by a compassionate, vigorous team whose members go to unusual lengths to visit their patients wherever they may be. Sometimes that means driving an hour outside town and up a snowy mountain road into a hollow where people live without electricity.
“Much of our service area is very rural mountains all around us,” says Alexander Nesbitt, M.D., the doctor who founded the palliative care service after seeing the need for it during his stint as a hospice medical director. “We worked really hard to be sure we are extending hospice care out of the home. And when somebody is sick and not ready for hospice, we wanted to get them extra support and symptom management.”
Nesbitt, a longtime family doctor, began the palliative care program in the hospital in 2005. “At the time, nobody knew what palliative care was,” he recalls. Eventually, the hospital in Williamsport opened a seven-bed hospice unit. Nesbitt was spreading the word among his medical colleagues at three of the system’s small community hospitals, along with an unaffiliated critical access hospital, about the difference between hospice and palliative care and gaining referrals for seriously ill patients who needed attention to their symptoms and social needs well before the end of life. As the palliative care service became busier, a question arose: What happened to these patients when they were discharged from the hospital?
That’s how Susquehanna’s outreach to local nursing homes began in 2007, before it was common to offer palliative care in that setting. Nancy Patchen, a longtime hospice nurse, was hired to start working with patients at an area nursing home. Since then, the program has grown to eight nursing homes and three assisted-living facilities, served by three advanced practice nurses.
They introduced the program one nursing home at a time by explaining to administrators and staff the value of working with elderly or very sick people and their families about goals of care and symptom control to avoid unnecessary hospital stays and improve patients' quality of life.
“We work our way into the culture of the facility,” Patchen says. “Each one is different. You have to figure out how each one works.” Administrative supportive can ease rollout, but in every case, there’s a process of educating physicians and nursing staff at the facilities about what palliative care can offer.
That kind of flexibility has allowed a small health system in a rural area with modest resources to develop a palliative care program that is responsive to the community’s needs and culture. Because Susquehanna’s service area includes people with a variety of religious and cultural backgrounds, including an Amish population, the palliative care team has had to be sensitive to patients and families with varying levels of trust in the health care system and concerns surrounding end-of-life care.
Meanwhile, the team spends time reaching out to the community to encourage conversations about living with serious illness and preferences at the end of life. “Palliative care is this medical movement, but it’s very important that we reach beyond the medical world and work closely with other elements of the community,” Nesbitt says. “We’re working with the legal, social services and faith communities. That’s really important if we’re going to change the culture, broadly speaking.”
Bon Secours Richmond Health System, Richmond, Va.
The woman and her husband knew she was nearing the end of her life, but it still came as a shock when her condition declined suddenly and he brought her to the emergency department. Right away, members of the palliative medicine team who had been caring for her at the Bon Secours Richmond Health System outpatient clinic were alerted that she was in the ED and came down to help. When it was clear that she was actively dying and would be transitioned to comfort measures, the palliative care team turned off the harsh overhead lighting and brought in a lamp from the waiting room that provided a warmer glow.
Because the palliative medicine team members knew the couple from months of visits to the outpatient clinic — and because the team is organized so it can follow patients wherever needed — team members were available to make the woman’s final moments meaningful even in a hospital emergency department.
The Bon Secours team is centered around its patients, whether they are being seen in a hospital, at home, in a clinic or in a nursing home. That consistency is vital for patients and families dealing with the end of life, says Robert Fortini, vice president of clinical operations for Bon Secours, in Richmond, Va. “In the last weeks of life, changing every person you’re comfortable with is very traumatic to the patient, and it’s even traumatic to caregivers and families,” he says. In the Bon Secours model, “the same physician and nurse are taking care of them the whole time.” The team has a strong social work component and includes Amy Holtz, a chaplain dedicated to palliative care.
The Bon Secours palliative medicine program draws strength from being organized as an outpatient medical practice, which gives it flexibility and a focus outside the hospital and on the entire continuum of care, explains Leanne Yanni, M.D., the program’s medical director since 2011.
Patients are tracked during their care by 60 nurse navigators who are embedded throughout the health system. The nurse navigator is involved in the initial meeting with the patient and family and is responsible for the follow-up and ongoing care provided to them. Nurse navigators also remain vigilant for signs of potential crises that could prompt a visit to the hospital.
The model is resource-intensive, but it fits within a population health-oriented, accountable care model, Fortini says. Bon Secours is committed to accountable care, with five accountable care organizations. Fortini says the program is a good fit for health systems that are working to reduce unnecessary hospital admissions and was part of the reason costs for the Bon Secours Medicare Shared Savings Program went down 6 percent last year.
The program has gained Joint Commission certification for all of the system's four hospitals, a process that enhanced the program's focus on quality measures. Its continuity and quality also are maintained by a Palliative Care Collaborative, a systemwide interdisciplinary group that holds monthly conference calls and collaborates online to develop policy and work on best practices, educational initiatives and quality pilot projects.
What makes the Bon Secours palliative medicine program distinct, Fortini says, comes from its collegiality and collaboration in different settings: inpatient, ambulatory, home health and hospice. “In a lot of organizations, those are really siloed,” he says. “Here, we’ve broken down the walls between those departments.”
Cambia Palliative Care Center of Excellence, Seattle
When a moment of crisis comes for a patient whose life hangs in the balance, pain and fear can send family members in opposite directions, resulting in intense conflict over whether medical interventions should continue. By using narrative medicine — techniques to learn the patient’s own story and let it inform decision-making — families can be brought together, says Carol Kummet, a social worker with the University of Washington Medical Center's palliative care program at Harborview Medical Center in Seattle.
She tells of a family shocked by a woman’s sudden death from a brain aneurysm, after which the husband and daughter disagreed vehemently about organ donation. “We went into a family meeting, and the daughter said she hoped [the woman's] death would make a difference for others, while the husband said he wanted a comfortable and dignified death for his wife,” Kummet said. The palliative care team, asking for more information about the woman, heard story after story about how she always helped people, particularly new immigrants who needed help navigating the system and learning English. “Everything she did in her life was to help others,” Kummet recalls. The woman's husband then said: “Of course, she would want to donate her organs. That would be a dignified death to her.”
Situations like these — when family members are emotional and deeply at odds with one another about medical choices — can tear families apart. Harborview’s palliative medicine team uses narrative medicine as one of many tools to help patients and families make choices focused on the person, not technology.
Palliative care in the University of Washington system’s four hospitals, outpatient clinics and home health service has been brought together under an umbrella organization. The Cambia Palliative Care Center of Excellence was established in 2012 to identify best practices in palliative care and provide them consistently across the system’s continuum of care. The center also brings together educational programs about palliative care across multiple disciplines, including medicine, nursing and social work.
“The center was developed to coordinate activities, to learn from each other and speak with a single voice,” says Randall Curtis, M.D., the center’s director and a professor of medicine at the University of Washington.
The center coordinates palliative clinical care, education and research. A palliative care clinical strategic planning committee includes representatives from each hospital and meets monthly to share information and resources across the system. Quality is measured the same way at each hospital, and hospitals cooperate on pilot projects for care improvement. The four hospitals recently worked together to apply for and receive Joint Commission advanced certification in palliative care.
“We have a central place where people can come together to share ideas and collaborate and be aware of what other people are working on,” says Caroline Hurd, M.D., director of education operations for the center. The center’s work to update comfort care orders, for example, is a resource not just for UW but also for other health care organizations in the region, she says.
The center is developing a standardized curriculum for primary palliative care to be used at the undergraduate and graduate level for students in nursing, social work, medicine and chaplaincy. “It’s a way for us to have a common language across all disciplines,” Hurd said.
Even with palliative care teams at each hospital and a robust outpatient program in 11 neighborhood clinics and 14 assisted-living facilities, leaders recognize that there aren’t enough palliative care-trained professionals to meet growing demand. They have developed an extensive program to educate postgraduate trainees and practicing clinicians in the basics of palliative care, such as determining goals of care and managing symptom control. “Those basic skills should be part of everybody’s bedside manner,” Hurd says.
Citations of Honor
OSF HealthCare Supportive Care, Peoria, Ill.: A large, integrated health care system carries out extensive advance care planning as part of its supportive care program that includes palliative care and hospice.
Memorial Hermann Physician Network and Symptom Management Consultants, Houston: Supportive medicine is based in a large, well-resourced physician network that provides palliative care across the continuum.
Meridian Health, Neptune, N.J.: Palliative care is provided at home in a successful Medicare demonstration project and is essential to the health system’s accountable care organization.
About the awards
The Circle of Life Awards honor programs that strive to provide effective, patient- and family-centered, timely, safe, efficient and equitable palliative and end-of-life care; show innovation in approaches to critical needs and serve as sustainable, replicable models for the field; demonstrate significant impact on people with life-limiting illnesses and those around them; and actively work with other health care organizations, educational and training programs and the community. The Circle of Life Awards are sponsored by the American Hospital Association, Catholic Health Association of the United States, National Hospice and Palliative Care Organization and National Hospice Foundation. Major supporters include the California Health Care Foundation and Cambia Health Foundation. For complete criteria and more information, visit www.aha.org/circleoflife.