Name of Project: PhoenixCare
Institution: Hospice of the Valley, Phoenix, AZ
PI: Carol Lockhart, PhD
Abstract (as described by Project staff)
Hospice of the Valley, in collaboration with select managed care organizations, is developing PhoenixCare, a palliative coordinated care program for patients meeting admission criteria for advanced chronic obstructive pulmonary disease, congestive heart failure, and metastatic cancer. PhoenixCare evaluates whether the program provides better quality of life, satisfaction, and outcome measures at no greater cost for the intervention group than that for other managed care patients not receiving PhoenixCare services.
Brief Synopsis of Program Characteristics, Successes and Challenges
The PhoenixCare Program is based on the assumptions that patients with serious chronic life-limiting illnesses want to live in their own homes, palliative care can help seriously chronically ill patients and their families/caregivers achieve a better quality of life. Further, the complex needs and symptoms experienced by patients who are seriously chronically ill with metastatic cancer, congestive heart failure and chronic obstructive pulmonary disease are manageable and can be controlled enough to improve a patient's satisfaction with care and quality of life. The project is also based on the belief that patients and families who know how to manage a serious chronic illness will experience fewer medical crises, and that patients with such illness who understand and manage their illness are able to be actively involved with their families and communities.
The project supports patients and improves their quality of life by enhancing patient knowledge and empowerment, facilitating caregiver/family knowledge and participation, mobilizing public and private community based services, stabilizing the disease process and improving coordination of physical, psychosocial and spiritual support services. It does so within a two-year timeframe of death.
Each patient is enrolled in a managed care health insurance plan; if the patient requires services covered under their health plan, the RN case manager coordinates with the primary care physician, or the health plan case manager. If the needed services will be provided by a community agency, the RN case manager coordinates with the community contact person.
The project team includes an administrator, a registered nurse, a medical social worker, spiritual counselor and medical director. The initial plan indicated an RN Case Manager would typically carry a patient caseload of 45 to 50 patients. In practice, a caseload of 35 is more realistic.
To date, they have enrolled a total of 240 patients, 136 of whom are in the intervention group and 104 in the control group. Patients are referred to PhoenixCare by their personal physician, managed care organization (MCO), hospital discharge planner, self-referral or by family and other sources. Although the patient remains under the care of his or her managed care physician, a primary RN case manager is assigned to each patient. This case manager maintains weekly phone contact and home visits are conducted at least monthly (more often if needed). The case manager:
Further, this project offers the following services:
Exportable Products/Tools
The project has myriad tools ranging from 68 patient education fact sheets, to professional assessment tools and survey instruments. All tools are available on the PhoenixCare Web page, and all are available to others in the end-of-life community to use with appropriate copyright notation.
Policy Issues
A major policy issue is how to pay for this type of care that is so important to patients and yet is not covered by insurance, Medicare or Medicaid.
Communications
The project has developed a strategic communications plan after participating in the RWJF sponsored Radiant training. It has a program brochure that is a good general community contact piece. They also have a quarterly newsletter.
They have completed an initial letter of intent for a communications grant. The project would like to use these funds to develop a database of articles related to future articles regarding the project, hiring a research assistant to do so. They would also like to fund some of the time for the project staff to write articles regarding their findings.
Generalizing the Model
The project has collected cost data that will help others see the generalizability of this model. Project staff believes their experiences with the model will provide valuable insights. However, many potential users of the model may not support some generally held assumptions about care prior to hospice and what people do when provided support and education earlier in their disease process.
Words of Wisdom from the Project
The project staff note that the reasons for their success have to do with an organizational culture that embraces change/challenges, leadership that is knowledgeable and accepted -- internally and externally -- and a willingness by team members to tolerate ambiguity and uncertainty as new things are developed and tried.
Project leadership also note that people undertaking a new project should establish firm financial or other incentives for partnering physician providers and managed care organizations/insurance plans to participate and refer patients, ensure adequate commitment to and funding for evaluation of both the program and research/dissemination components of the project, and constantly monitor the environment to identify changes that will impact the project.
Promoting Excellence in End-of-Life Care is a national program of The Robert Wood Johnson Foundation dedicated to long-term changes in health care institutions to substantially improve care for dying people and their families. Visit PromotingExcellence.org for more resources.