Models & Research

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.

How Hospitals Shape End of Life

More like this: Bioethics | Death & Dying | Legal & Insurance | Models & Research

How Hospitals Shape End of Life Care
Summary of Sharon. Kaufman, PhD Presentation to
California Coalition for Compassionate Care
Steering Committee Meeting June 3, 2005
Excerpted from Minutes of Meeting

Sharon Kaufman, Ph.D. Professor of Medical Anthropology at UC San Francisco recently published a book entitled, And a Time to Die: How American Hospitals Shape the End of Life. (2005, NY: Scribner). Dr. Kaufman said in her role as a medical anthropologist she “makes the strange, familiar; and makes the familiar, strange.” She described her recent research about the culture of hospitals and how they influence the “problem of death,” which she defined as people dying with too much technology and not enough humanity.

A MODEL TO GUIDE HOSPICE PALLIATIVE CARE BASED ON NATIONAL PRINCIPLES AND NORMS OF PRACTICE

More like this: Models & Research
In a consensus–building process led by the Standards Committee of the Canadian Hospice Palliative Care Association, providers, organizations and consumers joined to share their experiences and develop a clear vision for hospice palliative care that everyone could use. The resulting model represents more than 10 years of collaboration by individuals, committees, associations and governments across Canada and is based on the nationally accepted principles and norms of practice.

A Framework For Thinking Ethically

More like this: Bioethics | Compendiums/Guides | Educational Opportunities and Events | Legal & Insurance | Models & Research | Talking Things Over

A Framework For Thinking Ethically
Markkula Center for Applied Ethics, Santa Clara University
This document is designed as an introduction to thinking ethically. We all have an image of our “better selves” - or of how we are when we act ethically or are “at our best.” We probably also have an image of what an ethical community, an ethical business, or an ethical government is - and maybe even an ethical society as a whole. Ethics really has to do with all three levels - acting ethically as individuals, creating ethical organizations and governments, and making our society as a whole ethical in the way it treats all.

American Geriatrics Society (AGS) Position Statement: THE CARE OF DYING PATIENTS

More like this: Models & Research
Dying is the final portion of the life cycle for all of us. Providing excellent, humane care to patients near the end of life, when curative means are either no longer possible or, no longer desired by the patient, is an essential part of medicine. The American Geriatrics Society (AGS) recognizes that most people near the end of life want to live as fully as they can. They want their health care providers to honor their wishes and goals and to help them maintain their dignity and independence while relieving symptoms and maximizing comfort. For physicians and health care providers to provide excellent care to dying patients and their families, they need expertise as well as compassion.

Americans for Better Care of the Dying

More like this: Advocacy | Caregiving | Compendiums/Guides | Disease Management | Educational Opportunities and Events | Models & Research | National & International | Palliative Care and Hospice

Americans for Better Care of the Dying goals are to: build momentum for reform; explore new methods and systems for delivering care; and shape public policy through evidence-based understanding.

Every dying person needs to be able to count on excellent care. Americans for Better Care of the Dying (ABCD) aims to improve end-of-life care by learning which social and political changes will lead to enduring, efficient, and effective programs. ABCD works with the public, clinicians, policymakers, and other end-of-life organizations to make change happen.

ABCD President Joanne Lynn, MD is one of the foremost national leaders in this movement and the author of Handbook for Mortals: Guidance for People Facing Serious Illness; and Improving Care for the End of Life. Extensive excerpts from both of these books are accessible via the ABCD website

Approaching death : improving care at the end of life

More like this: Models & Research
Report of the Institute of Medicine (IOM) study study that which examined issues related to dying, decisionmaking, and appropriate care and selectively focus on several narrower topics. The group concluded that although much is being done to improve the care of critically ill and dying patients, many questions remain to be persuasively answered—or, for that matter, asked—about what constitutes appropriate care for different kinds of patients and how choices about care for dying patients can best be made and implemented.

Attitudes Toward End of Life Care In California

More like this: Models & Research

California HealthCare Foundation’s online resource for independent research, analysis, and news on issues affecting health care delivery and financing with including in depth looks at Chronic Disease Care, Long Term Care and End of Life Care.

Attitudes Toward End-of-Life Care in California
Lake Research Partners, November 2006

While it’s true that Americans are living longer, there is a flip side. The aging population is grappling with new challenges, including an increasing number of chronic illnesses and a range of sensitive issues brought about by modern medicine and end-of-life medical care.

Californians' End-of-Life Care Differs by Race and Ethnicity

More like this: Bioethics | Caregiving | Models & Research | Multi-Cultural Issues | Palliative Care and Hospice | Planning

This important study and related reports released by the California Healthcare Foundation in March 16, 2007 reports that: In California, the most populous and diverse state in the country, significant racial and ethnic differences exist at the end of life. These reports – the first in a new series of CHCF-supported projects focusing on end-of-life issues - found significant variations in the expectations, experiences, and decisions of patients and their families in the months preceding death.

“As California’s diverse population grows older, ensuring quality care at the end of life for everyone takes on even greater significance,” Mark D. Smith, M.D., M.B.A., president and CEO of CHCF, said Thursday at the Association of Health Care Journalists conference in Los Angeles. “By supporting research and projects to improve the quality of end-of-life care, CHCF sees an opportunity to help make California a national example of best medical practices and culturally appropriate care.”

Care of Dying

More like this: Models & Research | Multi-Cultural
A Portland Catholic health care coalition dedicated to promoting cultural change that embraces supportive care, compassionate relief of suffering and pain, and symptom management for helping people live with life-threatening illness. "We recognize a better death is possible." Excellent research reports and outcomes in cultural diversity and palliative care.

Care of the Patient with Severe Chronic Illness – An Online Report on the Medicare Program.

More like this: Caregiving | Legislative, Regulatory, Finance | Medicare Guides | Models & Research

Care of the Patient with Severe Chronic Illness-An Online Report on the Medicare Program is a key critical report completed in 2006 by the Dartmouth Atlas Project. It reports that: “Almost one-third of Medicare spending for chronically ill is unnecessary… A fundamental problem, and one that contributes to both overspending and worse outcomes, is that most acute care hospitals have become first-line providers of services to chronically ill elderly people, whose care would be better managed, safer and less expensive outside the hospital setting. . . . Staggering variations in how hospitals care for chronically ill elderly patients indicate serious problems with quality of care and point toward unnecessary spending by Medicare. Lower utilization of acute care hospitals and physician visits could actually lead to better results for patients and prolong the solvency of the Medicare program.” The study calls for overhauling how the nation manages chronic illness, and proposes that hospitals take leadership in redesigning how they care for the chronically ill.