by the Staff Associates at Life Care Center of Sarasota, Sarasota, Florida
As fellow leaders of quality skilled nursing facilities, you can imagine our horr or as we read a summer 2002 article in the New York Times quoting physicians from the American Medical A ssociation as saying that "nursing homes are the worst place to die." We were extremely distressed to read this because we don't like to read stories that make broad, sweeping generalizations about nursing homes, especiall y when we believe that our nursing home is an exception to the rule. So we decided that we would prove the phys icians wrong.
Once we began to examine our care and services for the dying resident, though, we quickly realized that what we provided for the dying resident wasn't any different from what we provided for the nondyi ng. So on September 17, 2002, we began a continuous quality improvement (CQI) project to develop a quality end- of-life program. We named the program "Butterflies are Free" (the butterfly reference signifying "moving from o ne life to another"). This CQI project continued for nearly two years until July 20, 2004. Although the project is no longer active as a CQI exercise, we continue to make improvements to it. The Butterflies are Free progra m has become integrated into our facility and is a major part of our culture of caring.
The Problem Following the realization in 2002 that a wonderful oppor tunity for program development existed, we began tapping into every resource we could find. The Executive Direc tor attended an end-of-life seminar at the Florida Health Care Association's annual conference. The Director of Nursing began meeting with our local Hospice. The Social Worker began looking online for end-of-life resources . We found the End-of-Life Nursing Education Consortium (ELNEC) Web site (www.aacn.nche.edu/elnec), the California Coalition for Compassionate Care (CCCC) (www.finalchoices.calhealth.org), and Elisabeth Küble r-Ross's "stages of grieving" to be particularly helpful. Using the CCCC's "Assessing Your Facility's Policy an d Practice of End-of-Life," we completed a facility self-assessment to determine how we felt about providing go od end-of-life practices. We identified strengths, weaknesses, and opportunities for improvement, and establish ed baseline data with which we would measure our progress.
We also began to review the needs of our resi dents, their families, and our associates to determine what services were needed at the end of life. Initial is sues identified were:
Residents and families had major concerns regarding residents' comfort at the end of life.
Families didn't know what to expect from the dying process and therefore were relucta nt to accept their loved ones' approaching deaths.
Concerns were expressed about new faces and new phil osophies being introduced to residents at the end of life when Hospice staff arrived to provide care. We are fu lly staffed, with no agency personnel, and we staff on a permanent assignment basis. Because our staff and resi dents know each other so well, this has created a family culture in our facility-and new faces are new f aces.
Financial strain on residents and their families were posed by end-of-life programs already opera ting in the community.
Our associates felt just as uncomfortable with the dying process as the families because of a lack of education and experience.
We assembled an interdisciplinary team, including the Exec utive Director, Director of Nursing, Social Services Director, Financial Director, Activity Director, and volun teer representatives from nursing, dietary, and housekeeping. Three family members, representing various faiths , were also involved in the early planning stages.
Planning Based on the above information, the team developed the following goals: "Establish an end-of-lif e program that maintains comfort and dignity for the resident, involving the family, residents, and staff in th e plan of care at their personal level of comfort. The end-of-life program should put no financial strain on th e family." The team established the following objectives to meet the goals: