The winners of the 2014 Circle of Life Award for innovation in palliative and end-of-life care are all reaching out beyond their walls to serve people with serious, complex illnesses in ways that can be adapted by other health care providers.
Baylor Health System has rebranded its palliative care program as “supportive care” and extended its reach in new directions, helping everyone from homebound elders to the children of parents with life-threatening illness. Lehigh Valley Health Network sends nurse practitioners into the homes of seriously ill patients to develop long-term relationships. Yakima Valley Memorial Hospital is leveraging its community’s commitment to improving the quality of life by extending palliative care throughout a rural area with limited resources.
The 2014 award is supported in part by the California HealthCare Foundation, based in Oakland, Calif., and Cambia Health Foundation, based in Portland, Ore. Major sponsors of the 2014 award are the American Hospital Association, the Catholic Health Association of the United States, the National Hospice and Palliative Care Organization and the National Hospice Foundation. The award is cosponsored by the American Academy of Hospice and Palliative Medicine, the Hospice and Palliative Nurses Association, the National Board for Certification of Hospice and Palliative Nurses, the Hospice and Palliative Nurses Foundation and the National Association of Social Workers.
ABOUT THE AWARD
The Circle of Life Award honors 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 illness and those around them; and actively work with other health care organizations, educational and training programs, and the community. For complete criteria and other information, visit www.aha.org/circleoflife.
Baylor Health System Supportive and Palliative Care Services
One of the greatest losses for a dying person is giving up food and water when swallowing becomes difficult. Recognizing the emotional resonance of meals to both the patient and family, Baylor Health’s Supportive and Palliative Care Services, in collaboration with speech therapists and nutritionists, avoids inserting a feeding tube by teaching the family members of dying patients to feed them simple foods such as ice cream.
“It’s a very loving thing that families can do,” explains Robert Fine, M.D., clinical director of SPC. “It poses no more choking risk than that of saliva. Patients and families alike prefer this approach.”
The comfort feeding program is one of an array of tools that the SPC team has implemented in recent years, including adding the term “supportive care” to its name. “We started out as the Palliative Care service but when we rebranded as Supportive and Palliative Care, early consults, including outpatient referrals, grew dramatically,” Fine says.
Baylor’s palliative care program grew out of a clinical ethics program that was providing about 120 collaborative clinical ethics consultations with medical specialists, most at the end of life. The ethics consultation team could help to negotiate a care plan, but could not treat pain or other suffering. Recognizing the need to reach seriously ill patients earlier, the Palliative Care program was launched in 2004.
As a learning organization, Baylor has undergone a cultural transformation to embrace palliative care as distinct from hospice. With leadership support, Joint Commission-certifiable teams representing four core disciplines (physician, nurse practitioner, social worker and chaplain) are being placed at each acute and chronic care facility. The program also maintains multiple options for community-based ambulatory palliative care, including two outpatient clinics that ensure continuity of care for discharged patients.
The organization supports innovation by having programs work synergistically. Fine has worked with the director of the long-established Baylor House Calls program, a service providing care for about 1,200 homebound elders, to build comfort care and symptom management resources. “That doesn’t require a new investment; it’s a coordination of investments that already exist,” Fine explains.
Synergism with the critical care and emergency departments led to the development of “trigger tools” to systematically identify their SPC-appropriate patients. The result: more palliative care consults on admission from the ED, more direct hospice admissions from the ED, and shorter intensive care unit lengths of stay.
The program maintains four child life specialists who care for children of seriously ill adults. The program was started when palliative care team clinicians realized they weren’t specialists in dealing with the needs of children who were losing a parent. The program has grown, having provided support to 703 children in 2013.
SPC chaplains use a spiritual assessment tool to identify patient and family needs. The pastoral program also maintains a group of volunteer doulas who accompany and comfort the seriously ill and dying. “Doulas can sit with a patient all day,” explains the Rev. Marci Pounders of Dallas. “Sometimes they just want a presence, a good listener who can just sit there and hold their hands.”
Lehigh Valley Health Network OACIS/Palliative Medicine
So many palliative care providers wish they could have reached a patient earlier in his or her illness. Lehigh Valley Health Network identifies patients diagnosed with such illnesses as dementia, Parkinson’s, multiple sclerosis, congestive heart failure, chronic obstructive pulomary disease and cancer as early as possible. It then sends nurse practitioners to visit them at home, often for years. “We’re seeing some patients for three to five years,” says Gretchen Fitzgerald, R.N.
Fitzgerald believes time itself is a tonic and helps patients come to grips with their new reality one visit at a time. She recalls a man suffering from end-stage cardiac disease, COPD and renal failure. “He really wanted to stay home and out of the hospital, but he wasn’t emotionally ready for hospice,” she says. “After months of visits to his home and a lot of conversation, he was diagnosed with cancer. He chose not to pursue treatment and to enter hospice, and died a month later at home.”
Fitzgerald is convinced the conversations in the man’s home about his values and beliefs were crucial to his being able to make the right choice for himself and his family. “When you go into someone’s home, people are much more honest; they are more insightful, because they feel comfortable there,” says Fitzgerald, one of six nurse practitioners who make home palliative visits.
Today, Lehigh Valley Health Network’s palliative medicine program, OACIS (Optimizing Advanced Complex Illness Support) spans the full continuum of care, with an inpatient consult service, outpatient clinic and home visits. Its roots reach back to 1999 when senior physicians received a grant for an inpatient palliative care consulting service and another specifically for the ICU, explains Dan Ray, M.D., medical director. They also linked with a project focused on serving medically complex patients in primary care. In 2006, the network held a two-day retreat, inviting a broad spectrum of stakeholders, including patients and families, primary care and specialist physicians, community members, benefactors, hospital administrators and third-party payers, which resulted in a strategic initiative for palliative care for the entire network.
Those connections extend into the community in novel ways that support people with serious illness. Clinical Coordinator Barb Sikora ticks off a long list of organizations and agencies she has reached out to: parish nurses, church volunteer groups, welfare office case managers, specialty clinics, ambulance companies, nursing home social workers, the public housing authority — even the coroner’s office.
The OACIS home-based program benefits from collaboration with Community Exchange, a time bank that is part of the health network’s community health department. Through the time bank, volunteers can exchange services with one another, such as companionship, light house and yard work, medication pick-up, rides to medical appointments, shopping, and caregiver respite. OACIS patients and family members can become active members in the exchange, reducing their social isolation and enhancing their sense of dignity by giving back to others.
Lehigh Valley has reorganized itself to be more longitudinal, notes Sue Lawrence, senior vice president for Care Continuum. It’s all part of an evolution toward managing populations in an accountable way, and providing support for patients with complex illness and chronic conditions is an essential part of the strategy. She credits the physician leaders who developed OACIS. “As a network, we have been blessed with some leaders who had a vision for the future and recognized that together these siloed groups could achieve much more than each individual group could achieve on its own,” she says. “They provided the platform for us to stitch all this together.”
Yakima Valley Memorial Hospital
Take a map of Washington state, point to the middle and down a bit, and you’ll find the city of Yakima — and not much else. Yakima County is quite rural; the Yakima Indian Reservation comprises one-third of the county, and the rest is either mountains or farms (with fruit crops, wine grapes and dairy cows). A fifth of the county’s population lives below the poverty line and 65 percent of Yakima Valley Memorial Hospital’s patients are on Medicaid or Medicare. This is not a place where community hospitals can afford to throw a lot of money at new ideas in health care delivery.
And yet, Memorial and its foundation provide their community with sophisticated, caring patient- and family-centered palliative and end-of-life care. They’ve done it by tapping into the community’s own commitment to improving the quality of life in central Washington.
“This is a small community,” notes Memorial Foundation President Anne Caffery. “To have many of the things large communities have, people here have become accustomed to cross-training, collaboration and punching above our weight. By necessity, we have gotten very crafty and can-do about sharing tasks.”
The growth of hospice and palliative care reflects Memorial’s culture, nurtured by former hospital CEO Rick Linneweh. Caffery recalls when he suggested they look at the criteria around national award programs such as the Circle of Life and AHA NOVA awards to set goals for the organizations. “He said he wasn’t as concerned about getting the awards as about keeping the criteria in front of us so we knew what to aim for,” she says.
In the early 2000s, a steering group of hospital staff and volunteers examined what the region needed to improve end-of-life care. The results included a major fundraising campaign to build a hospice house, and the creation of the largely volunteer Memorial Transitions palliative care program. Transitions is an outpatient program staffed by a social worker and volunteers who serve more than 200 patients a year in their homes.
Transitions is an example of a program that gets a lot of value out of a small investment. A few staff members who were interested in getting a palliative care program off the ground wrote a proposal for a pilot that would cost $26,000, and were funded. A couple of years later, they wanted to expand the idea and needed $52,000. “We didn’t have enough, so we found two donors in the community who split that,” recalls Caffery.
Hospice was begun in the home setting in 1995, but Memorial soon recognized that some patients needed to be cared for in a different setting that would not involve hospitalization. The Cottage in the Meadow hospice care facility became a communitywide cause, explains Memorial Foundation board member Royal Keith. Despite the region’s moderate population and relatively low median income, the $5 million facility was built entirely with contributions from Yakima’s business community and 6,500 individuals.
Yakima Memorial’s palliative care program could be replicated in any rural area that has limited resources. “We have not tried to reinvent the wheel here,” says Leslie Whiteside, foundation grants manager. “We’re taking what works well from other places and applying it in different ways here so it becomes unique to us. Any community can take what we’ve done and make it theirs.”
Citation of Honor
University of Alabama in Birmingham
The palliative care program innovates in the ambulatory setting by training community health workers as patient advocates, enlisting the patient’s family and friends as helpers, and seeing patients in outpatient settings.