As professional planners working in the elder care field since the mid-1980’s, we are aware of the shining stars of elder care and end of life care. Annotated links will take you to model project sites and provide you with research needed to substantiate a shift toward community-based long-term care and palliative care. Current Issues are included to help keep ourselves and others abreast of matters affecting our work and communities of concern. The Journey Project Resource Center houses in-depth research collection far expanded beyond the representative sampling provided herein.

National Family Caregivers Association (NFCA)

The National Family Caregivers Association (NFCA) supports, empowers, educates, and speaks up for the more than 50 million Americans who care for a chronically ill, aged, or disabled loved one. NFCA reaches across the boundaries of different diagnoses, different relationships and different life stages to address the common needs and concerns of all family caregivers. Publishes dementia caregiver tip sheets among other things. Visit National Family Caregivers Association (NFCA) ... Read More

National Institute on Minority Health and Health Disparities

The mission of the National Institute on Minority Health and Health Disparities (NIMHD) is to promote minority health and to lead, coordinate, support, and assess the National Institutes on Health effort to reduce and ultimately eliminate health disparities. In this effort NIMHD will conduct and support basic, clinical, social, and behavioral research, promote research infrastructure and training, foster emerging programs, disseminate information, and reach out to minority and other health disparity ... Read More

Physician Orders for Life-Sustaining Treatment (POLST)

Physician Orders for Life-Sustaining Treatment (POLST) is a document to help ensure that a patient’s wishes are known and honored toward the end of life. It uses a standardized medical order used to indicate which types of life-sustaining treatment a seriously ill patient wants or doesn’t want if his or her condition worsens. POLST assists health care providers and patients or their surrogate to develop a transferable care plan of desired interventions when dealing with serious, life-limiting ... Read More

Promises to Keep: Changing the Way we Provider Care at the End of Life

Promises to Keep: Changing the Way We Provide Care at the End of Life published by the National Coalition on Health Care and The Institute for Healthcare Improvement in October, 2000. This report presents the stories of institutions and organizations that made a commitment to change and innovation to improve care at the end of life. The profiles presented in this report reflect some of the most promising pioneering efforts underway in the field of palliative care. RAND’s Center to Improve Care ... Read More

Reluctant Realism – Latino Perspective on End of Life Issues

Reluctant Realism by Margaret R. McLean and Margaret A. Graham published in Issues in Ethics, Winter, 2003 Volume 14, Number 1, Markkula Center for Applied Ethics, Santa Clara University pp. 7-9. To assist in the goal of improving the Latino health care experience in the San Jose community, 66 adults agreed to participate in a series of three focus group sessions that explored their attitudes and concerns regarding end-of-life care. This article presents their views of death and dying, their ... Read More

Respecting Choices

Respecting Choices is a model training program for facilitators who become resident experts in Advance Care Planning at health facilities and has a strong focus on organizational policy. The goal of the program is to build respect for choices into each organization's policies. A variety of posters, workbooks and planning guides are available in English and Spanish for work with consumers. The program was developed by the Gunderson Lutheran Medical Foundation (LaCrosse,Wis) in the early 1990s. It ... Read More

Snapshot: Death and Dying in California

Judith Citko and Lake Research Partners, November 2006 Despite its inevitability, death is a difficult topic for many patients, families, and physicians to discuss openly. However, with more Americans getting older and the increase in prime-time media coverage of highly charged end-of-life issues, there is a growing awareness and discussion of the complex considerations involved. This report, featuring survey findings and the latest data available, examines changing attitudes about death and ... Read More