Circles of Influence

Highlights of the Continuing Journey of Past Circle of Life Winners

2000

Organization:  Louisiana State Penitentiary Hospice Program, Angola, LA.  Angola is widely viewed as one of the toughest prisons in the US—most inmates are serving life-time sentences.  Average age of those in the prison is 42; average age of death is 52.  The hospice’s innovations cited in 2000 were its inmate volunteer program; depth and breadth of the volunteer training program; impact of program on restoring respect and dignity to both patients and volunteers; multi-disciplinary teamwork, including security; support from prison clubs; and reliance on patient’s own definition of family.

Recent Achievements:  The penitentiary continues to provide hospice care, and palliative care has moved upstream to other parts of the prison as well, so services are available before hospice is needed.  Inmate volunteers have been trained and provide assistance in these areas as well.

Hospice and palliative care in the prison—and its use of prison inmates to ease the dying process—have improved conditions (decreasing violence and legal challenges), solidified the working relations between security and medical providers, provided models for other prison programs throughout the nation, and led to public attention for those facing natural death in prisons (including a photography exhibit and a film in development).

At the time of the award, Angola officials were helping export its successful model to two other prisons in Louisiana.  The hospice staff continues to talk about its program throughout the nation and can point to other correctional institutions that have adapted Angola’s approach by letting inmates make it their own program.

Award Impact:  The Circle of Life crystal resides in the prison’s museum, which is visited by 1,000 people monthly.  Staff believes that recognition marked the organization as progressive and “good at what we do,” and in those ways helps reassure inmates they will be receiving appropriate end-of-life care.

Louisiana State Penitentiary Hospice used the award money both to mentor others in forming similar program and to improve its own program.  Part of the award money purchased a notebook computer with CD-burner, so the hospice could send CDs with all of the program specifics, policies, forms, reference lists, tools, etc. to others.  The LSP hospice also used the award money:

• for two volunteer banquets
• to send the team and several primary care nurses to several end-of-life seminars
• to have someone come in to provide education to more than 100 staff members
• to purchase educational books and tapes for the library and items for the chapel
• to design and print grief and hospice brochures
• to purchase a frozen drink machine to use as a fundraiser (the hospice is run strictly on donations by volunteers)
• to obtain medical supplies unavailable through the state
• to pay for an RN to prepare for and take the Certified Hospice and Palliative Care exam
• to purchase office supply items to assist in recordkeeping
   

Organization:   Improving Care through the End of Life, Franciscan Health System, Tacoma, WA which delivered palliative care through the health care system’s clinics and physician offices.  Franciscan Health System is a five-hospital system that is part of Catholic Health Initiatives. 

The program staff devised the now well-known question for physicians, nurses, and others caring for patients with chronic and terminal disease:  Would you be surprised if your patient were to die in the next year?  This approach has in many cases dramatically changed how practitioners around the world view palliative care.

The program was cited for clinic-based services, extended patient support, advanced care planning process, community orientation, extraordinary reliance on community-based volunteers, and strong hospice linkages.

Recent Achievements:  The clinic-based program eventually reached 11 Franciscan-owned clinics and a caseload of approximately 600 patients with RNs and chaplains providing clinic-based palliative care consultation.

Named Improving Care through the End of Life when it received the Circle of Life Award, the program believes its newer name, Palliative Care Outreach, defines its evolution—to include mid-level providers and open access to all community providers.

Following a recent restructuring, the program now has nurse practitioners and social workers providing home-based consultation.  Referrals can come from any physician, whether part of the Franciscan system, or requests can come from anyone in the community.

The palliative care consultations have led to earlier and more appropriate hospice referrals and so have significantly increased the time patients and families benefit from hospice services.

Franciscan is currently working to close the “disparity gap” in end-of-life care, with outreach in its service area to diverse populations that typically underuse hospice and palliative care.

Award Impact: The award gave credibility to what the program had accomplished.  Following the award presentation, four hospice programs in Washington, Oregon, and Louisiana purchased the program’s initiatives, policies, procedures, and forms, and the program staff mentored them for a year or longer until they were fully operational.  Award funds were used for program development, marketing brochures, and physician education on palliative care for patients with chronic and terminal conditions.  The program has received several additional awards and grants since it received the Circle of Life Award.
 

Organization:  Called the Hospice of the Florida Suncoast when it received the Circle of Life Award in 2000 and now known as Suncoast Hospice, Largo, FL, the hospice then provided care for 4,700 people each year, had 850 employees, and used 2,600 trained volunteers who worked with the dying, their families, and the community.  The hospice was cited for its creative community programs, Quality of Life fund, intergenerational volunteer program, bereavement children’s camp and family-to-family retreats, palliative care and hospice reference tools, a hospice software tool, and a Lifetime Legacies program—where high school students videotape patients’ stories and memories.

Recent Achievements: In the ten years since the hospice received one of the first Circle of Life Awards, it has remained firmly rooted in its commitment to providing services that  meet community and individual needs—following answers to its signature question “What do you want for the rest of your life?”

In 2000, the hospice was already reaching out beyond what the public traditionally perceived as hospice patients—cancer patients and the elderly.  Since 2000, it has expanded work looking at ongoing needs of patients with other chronic and terminal diagnoses, provided care earlier in the disease progression, and helped support caregivers.

Working with local hospitals, long-term care facilities, and continuing care/retirement communities, the hospice has established palliative care consult programs.  In four community hospitals, the palliative care interdisciplinary team (physician, advanced practice nurse, social worker, chaplain) is collaborative—jointly employed and funded by the hospice and the hospital.  In other facilities, an advanced practice nurse and other hospice team members are on-call for palliative care consultations.

The hospice also developed Suncoast Supportive Care Program, for those who need hospice-type support services but do not need the hospice six months prognosis.  Today, these account for 5-7 percent of Suncoast’s patients.  Services are home (wherever the individual calls home—including long-term care residences) and community-based and are supported by sliding scale payments and grants.  Support includes pain and symptom management, home health aides, homemaker companions, and social work/family services (for example, planning for future needs).

The hospice has also built on its strong children’s program.  In addition to continuing programs for children who are seriously-ill or affected by others’ illnesses, Suncoast now partners with every school in its district and is part of the “first responders” for crisis intervention.  The hospice participates in the Medicaid waiver program “Partners in Care,” providing case management as well as direct care.  The program waiver has tripled the number of children served and connected them more directly with services and care they need.

Most recently, the hospice has developed best practices for communicating—among team members, between team and patients, and between team and family, particularly long-distance family members.  It has added video, e-mail, and web-based tools.   A key finding:  texting was a satisfying and accessible way to exchange information.  And the hospice has been using its teen volunteers to teach texting to team and family members.  (The pilot study and best practices received the 2009 Excellence in Innovation Award from the National Association for Home Care & Hospice.)

Suncoast has a long tradition of assisting others in establishing end-of-life care services, receiving requests for information and advice virtually daily.  Through its Suncoast Institute, it provides ideas and materials for models, new programs, tool kits for staff and volunteer training, policies and procedures, and other advice.  Some for-charge consulting is provided on a sliding-scale basis.  While most requests were originally from hospices, after it received the Circle of Life Award, requests began to be received from a broader spectrum of care providers, including hospitals, nursing homes, continuing care communities, and others.

Award Impact: Suncoast was honored and challenged by the Circle of Life Award.  It was a reminder not to be insular—but to be mindful of how all audiences—hospitals, physicians, and community—viewed end-of-life care.  The community hospitals expressed pride in the hospice’s achievement, underscoring that hospitals and hospice served the community together.

In assessing the Circle of Life Award’s impact on fundraising, it is noted that granters often want to ensure that others are invested in and recognize the program’s value.  For individual donors, the recognition reinforced that care was innovative and high-quality—that it was a national model.

Award monies were used to reinforce linkages with community partners, including schools, physicians, and hospitals.  They also were dedicated to research and development for new children’s and palliative care services.

What hospice team members remember best about the award process was the Leadership Summit award presentation.  The team was celebrating what they had achieved and others were celebrating with them. They were humbled, excited, and proud…and hope that every year since their recognition in 2000 has been as incredible for the recipients.

The hospice reported that winning the Circle of Life Award opened previously-closed doors to physicians.  It opened the way to new collaborative arrangements with hospitals, including providing in-hospital hospice care. 

The hospice also noted that, as a Circle of Life recipient, it is in a “special fraternity” and it has learned from the other winning organizations.