December 1999

New Initiatives in the Supportive Care of the Dying

The enhancement of the supportive and compassionate care of the dying traditionally provided by Catholic health care remains a priority for many of Catholic Health Initiatives’ market-based organizations. One source of assistance and new ideas is Supportive Care of the Dying: A Coalition for Compassionate Care, a national coalition that advocates holistic care and acknowledges death as a phase of living. The coalition is comprised of Catholic Health Initiatives, the Catholic Health Association and 12 other Catholic health care organizations, which work together to develop and test innovative ways to create systemic change in the care of individuals with life-threatening illnesses. "Semantics are important in end-of-life care," said Sylvia McSkimming, executive director of the coalition. "The words that care givers use at that time can have more power and influence than at any other time in a patient’s life. But beyond the careful choice of words at a patient’s bedside, a health care organization can improve end-of-life care through assessment of current practices, gathering of feedback from individuals served and implementation of research-based models." Coalition now in phase two The coalition, formed in 1995, has completed the first phase of its work, which focused on creating a better understanding of the end-of-life experience. A needs assessment conducted through focus groups in 11 locations around the country has been summarized in a report, "Living and Healing During Life-Threatening Illness," available on the coalition’s Web site at "Based on the results of the first phase, we are just entering the second phase of our work, which calls us to action in three major areas: developing provider education strategies, creating community partnerships and developing tools that will help organizations create changes and measure how well they are doing in care of the dying," said McSkimming. Some assessment tools are already available. The coalition offers a self-assessment checklist that member organizations can use to help set strategic directions for improving supportive care of the dying. The coalition has also developed four questionnaires for use in gathering feedback from patients, their caregivers and families as well as health care professionals. All of these tools are available on the coalition’s Web site. "We can also help market-based organizations that want to compare their data to that of others in the coalition," said McSkimming. "We can usually provide comparative data reports within four weeks, at no cost." McSkimming notes that the coalition has been able to move forward quite rapidly in its work because of the combined strengths of the organizations involved, including Catholic Health Initiatives. "Catholic Health Initiatives is making a great contribution to the coalition," she said. Bobbie Ingram, vice president and chief nursing officer for Catholic Health Initiatives, has been instrumental in designing the coalition’s open-architecture conferences, which are structured to promote a free and creative exchange of ideas about end-of-life care. St. Joseph in Albuquerque part of project that considers cultural influences on end-of-life care St. Joseph Healthcare in Albuquerque, N.M., has been directly involved in the work of the coalition. St. Joseph is one of three health care providers that participated in a project to develop a model for end-of-life care in culturally diverse communities. St. Joseph Healthcare conducted a series of focus groups with Mexican immigrants who had lived in the U.S. for less than 15 years and were seriously ill, or had a family member who was seriously ill. The participants were interviewed about their attitudes toward end-of-life care. The focus groups confirmed that immigrants with limited English-speaking capability face many barriers to accessing the U.S. health care system. Based on these findings, the Albuquerque coalition developed a community-based supportive care model that includes three critical components:
  • The use of cultural mediators to serve as cultural and language interpreters and help immigrants navigate the U.S. health care system.
  • The involvement of Catholic churches and schools, which will identify people in need and match them with cultural mediators.
  • The establishment of a Community Steering Committee, which will set direction and assume overall responsibility for the development, implementation and evaluation of the program.
St. Joseph is now working with other public and private organizations to seek funding to implement the model in the community. Market-based organizations create early-intervention model Catholic Health Initiatives’ market-based organizations in the Mid-Atlantic states have developed "Guidebook for Caregivers," a resource for staff and others who care for persons with life-threatening illnesses. "The mission leaders of several market-based organizations began by conducting an assessment of current practices for end-of-life care," said Peggy Egan, OSF, vice president of mission integration for Catholic Health Initiatives. "Based on that assessment and the work of the Supportive Care of the Dying coalition, we created task forces and a cross-functional steering committee that developed a model for end-of-life care." The model encourages intervention at the time of a life-threatening diagnosis. "It encourages patients and their families to create life plans that consider individual and family needs, detail how the patients want to live the rest of their lives and how they want to die," said Sister Peggy. "People facing the end of life often fear pain, being a burden to their families or being abandoned. A life plan can help take away those fears." The model is also community-based, emphasizing the need for smooth coordination between levels of care and for volunteers to provide respite care. "It can be so helpful to patients’ families to have volunteers from the community who are willing to sit with patients, or even make trips to the grocery store," Sister Peggy said. "Guidebook for Caregivers" includes specific steps market-based organizations can take to implement the model. Sister Peggy emphasizes that the model is not a program, but an initiative. "It’s a whole way of delivering end-of-life care," she said. "It is still in its early stages, but it has wonderful potential."