Innovations in End-of-Life Care
an international journal of leaders in end-of-life care

A. ORIGINAL TOOLS FROM GENESIS ELDER CARE:

©2000 Genesis Elder Care. Published here with permission.

• Palliative Care Screen
• Steps to Implement the Palliative Care Delivery Process
• Pain Audit for Customers with Dementia

TIME: Toolkit of Instruments to Measure End-of-Life Care
www.chcr.brown.edu/pcoc/toolkit.htm
Published by the Center for Gerontology and Health Care Research at Brown University. Dr. Joan Teno led the research group that conducted literature reviews to catalogue existing instruments and developed new measures to examine quality at the end of life. The Toolkit is the result of this work funded by the Nathan Cummings Foundation and The Robert Wood Johnson Foundation.

Data Analysis and Reports for Toolkit Instruments
www.chcr.brown.edu/dart/dartpreview.htm

Growing out of the TIME project, DART shortens the Toolkit instruments and makes them more "user-friendly" by creating a computerized system that analyzes the data and returns a report to the health care facility. In addition, the new satisfaction survey being developed for the National Hospice and Palliative Care Organization also will utilize the DART service. Although the DART project is still in development, its developers at the Brown University Center for Gerontology and Health Care Research encourage interested parties to complete the needs assessment survey accessible via this website.

B. WEBSITES RELATED TO THIS ISSUE'S CONTRIBUTORS

Promoting Excellence in End-of-Life Care
www.promotingexcellence.org
A national program office of The Robert Wood Johnson Foundation with direction and technical assistance provided by the Practical Ethics Center at the University of Montana. Promoting Excellence is currently funding 22 projects to improve palliative care in different parts of the US. The University of Pennsylvania School of Nursing and Genesis Elder Care project "Palliative Care in Nursing Homes" featured in this issue is a grantee. Several tools from this collaborative project can be downloaded for individual use from the Promoting Excellence site. Tools include:

• Attitudes Toward Death Survey
• Family Palliative Care Quality Survey A & B
• Identification of a Palliative Care Customer
• MDS Trigger Guide for Palliative Care
• Pain Assessment Tool, Palliative Care Worksheet
• Physical/Emotional Symptom Tracking Form

To find them, either click on Search button and type in name of tool, or click on the "Evaluation" link in the left margin, and then click on "Instruments" for a complete list of all the tools available on this site sorted by project, grantee or alphabetically. Sort by grantee and scroll down to the University of Pennsylvania cell.

Facts on Dying: Policy relevant data on care at the end of life
www.chcr.brown.edu/dying/factsondying.htm
The Brown University Center for Gerontology and Health Care Research, with funding from The Robert Wood Johnson Foundation, is engaged in a five-year research effort to use both existing and new data collections to describe the dying experience in the United States of America utilizing maps which display geographical data about quality of end-of-life care. This site includes, publications, statistics, and slide presentations for health care professionals, consumers, and policy makers.

Hartford Center of Geriatric Nursing Excellence,
The University of Pennsylvania School of Nursing
www.nursing.upenn.edu/centers/hcgne
Neville Strumpf, PhD, RN, C, FAAN, at The Center for Gerontologic Sciences was co-investigator of the Promoting Excellence "Palliative Care in Nursing Homes" project conducted at Genesis ElderCare and featured in this issue of Innovations.

Home & Hospice Care of Rhode Island
www.hhcri.org
Therese Rochon, RNP, MA, MSN, is a family nurse practitioner with Home & Hospice Care of Rhode Island and one of the two nurse practitioners who provides the Palliative Care Consult Service featured in this issue's Promising Practice.

Rhode Island Partnership to Improve End-of-Life Care
www.chcr.brown.edu/commstate/homepagewithframes.htm
Through a grant from The Robert Wood Johnson Foundation, the Rhode Island Partnership to Improve Care at the End-of-Life, based at the Brown University Center for Gerontology and Health Care Research, is a collaborative effort among Brown University, the University of Rhode Island's Geriatric Education Center and College of Nursing, and Aging 2000, a nonprofit consumer advocacy organization. Also involved are key members of the Rhode Island State government and health care facilities around the State. The partnership offers multifaceted educational campaigns and resources to help begin the conversation about end-of-life issues, and prepare Rhode Islanders to make better medical decisions in advance.

C. OTHER RELEVANT WEBSITES:

Administration on Aging (AoA)
www.aoa.gov/practice/default.htm
This US government agency website includes pages of guidelines, statistics, and programs for practitioners and other professionals in aging.

California Coalition for Compassionate Care
www.finalchoices.calhealth.org
The Coalition is a statewide partnership of more than 50 regional and statewide organizations dedicated to the advancement of palliative medicine and end-of-life care in California. It is one of the 21 coalitions funded by the Community-State Partnerships to Improve End-of-Life Care, a grant program funded by The Robert Wood Johnson Foundation. In particular, the site includes a rich list of publications and materials for health care professionals, institutions, and consumers.

Center for Medicare Education
www.MedicareEd.org
Funded by The Robert Wood Johnson Foundation, the Center for Medicare Education (CME) is a resource for public agencies and private organizations that provide consumer education about the Medicare program and its health plan options. From the CME Publications link, readers can access The PACE Model—Programs of All-inclusive Care for the Elderly—that is referred to on this issue's Read More page as well as to other concise and readable briefs on Medicare benefits and their use.

Centers for Medicare & Medicaid Services
http://cms.hhs.gov/
Formerly the Health Care Financing Administration, this U.S. government agency provides health insurance for 74 million Americans through Medicare, Medicaid, and other government programs.

End-of-Life Nursing Education Consortium (ELNEC)
www.aacn.nche.edu/elnec/index.htm
The End-of-Life Nursing Education Consortium project is a comprehensive, national education program to improve end-of-life care by nurses, and is funded by The Robert Wood Johnson Foundation. The consortium's primary goals are to develop a core of expert nursing educators and to coordinate national nursing education efforts in end-of-life care.

Frontline Publishing
www.frontlinepub.com
Frontline Publishing develops subscription-based training programs and other materials that focus on the training and personal development of front-line health care workers, in particular for nursing assistants working in nursing homes.

Hospice and Palliative Nurses Association
www.hpna.org
HPNA is the only hospice and palliative nurses' professional association. Its purpose is to exchange information, experiences, and ideas; to promote understanding of the specialties of hospice and palliative nursing; and to study and promote hospice and palliative nursing research.

Hospice in a Skilled Nursing Facility - a Model for Success
www.cdphe.state.co.us/hf/download/hospicenh.pdf
The Hospice in the Nursing Home Work Group, a subcommittee of the Long Term Care Advisory Committee of the Colorado Department of Public Health & Environment has put together a resource guide entitled Hospice in a Skilled Nursing Facility - a Model for Success. It includes tools and charts to assist skilled nursing facility and hospice care providers in their partnership by setting forth the responsibilities of the two providers, including the recognition that many of these responsibilities must be considered as "joint."

Hard copies of this publication are also available through the Colorado Hospice Organization for four dollars. Email requests to CoHospOrg@aol.com.

Joint Commission on Accreditation of Healthcare Organizations(JCAHO)
www.jcaho.org/
JCAHO evaluates and accredits nearly 18,000 health care organizations and programs in the United States. An independent, nonprofit organization, JCAHO is the nation's predominant standards-setting and accrediting body in health care. It has developed state-of-the-art, professionally based standards and evaluated the compliance of health care organizations against these benchmarks. For information on accreditation services go to www.jcaho.org/whatwedo_frm.html.

National Association of Directors of Nursing Administration in Long Term Care (NADONA/LTC)
www.nadona.org
NADONA/LTC works to establish professional relationships with the various disciplines in long-term care, in an effort to promote quality of care and quality of life for long-term care residents.