End of Life Planning Project Region Nine Community Care Partnership Final Report

End of Life Planning Project—Final Report “Compassionate and competent care will be available, understandable, and accessible to all who are at the end of life. The diversity of cultural, spiritual, and religious beliefs will be treated with respect and sensitivity.” MN State Commission on End of Life Care

Current Reality 2001 Deaths Hospital Deaths Long- term Care Death at Home Received Hospice Care U.S.53%24%23%20% Rural MN 37.5%37%18%16% Region Nine 27-48%32-54%11-26%4-24%

Assumptions 1. End of Life Care can be done in a gentler, more respectful manner and cost less. 2. Futile high tech interventions are implemented when less costly, highly personalized interventions might better meet the needs of patients and families. 3. Patients and families can be better prepared for the types and difficulty of decisions needed. 4. Patient comfort can be improved. 5. Health care costs will continue to escalate as the population ages and eventually palliative care versus cure will be emphasized. 6. There are differences between hospice and end- of-life care. 7. Providers are doing the best the can within the current system.

Objectives 1. To conduct a comprehensive needs assessment in the region determining the care needs of end of life and deteriorating chronically ill persons. 2. To create a regional strategic plan for respectful care for people in end stage chronic disease and through the dying process. 3. To determine respectful strategies to decrease pain and suffering of people in end stage chronic disease. 4. To assist patients and families to make timely choices during deteriorating chronic illness.

Methodology  Regional advisory committee to guide the process  22 Focus groups  Interviews with patients & physicians  Interviews with payers and policy makers

Focus Groups  Urban & Rural  Hospital nurses  Clergy  Home Care Workers  Family  Hospice Staff  Long Term Care Administrators  Long Term Care Staff/Aides  Senior Citizen Volunteers  Social Workers  Assisted Living providers  Latinos

Data Analysis  Content Analysis of transcripts  Advisory Committee analysis & expansion  Steering team analysis

Findings 1. Better access to a variety of resources for patients, caregivers, families. 2. Education regarding end of life issues for patients, families, professional caregivers, and general public 3. Improved communication among and between family members and professional caregivers

Findings (cont.) 4. Smooth transition among various stages along continuum of care 5. Earlier admission to hospice & system of palliative care leading up to hospice

Other Findings  Payers & policy makers mirrored other focus groups  Rural differences in resources & relations  Cultural differences—end of life far from home  Importance of education

Recommendations Expected Outcome: Creation of a health care system that is  Patient directed  Consumers are educated to direct their care

Recommendations (cont.) Goal 1: Create a regional, culturally sensitive care system for palliative and end of life care  3-5 year demonstration project  Increased palliative care options  Reimburse integrated care coordination  Culturally sensitive advanced care planning  Portable health records  Promote hospice as a choice

Recommendations (cont.) Goal 2: Develop and deliver education to improve seamless palliative and end of life care.  Stakeholders to develop end of life education plan  Culturally sensitive end of life curriculum for multiple audiences  Mass-market promotion for advance care planning  Mentors for family caregivers

Contact Region Nine Development Commission 410 Jackson St. Mankato MN Funded by a grant from the Blue Cross Blue Shield of MN Foundation