In addition to the resources below, please see our Training and Education, Professional Organizations and Tools sections.

• National Initiatives
• NY Palliative Care Information Act
• Guidelines
• Research
• Scorecards and Studies
• Clinical Resources
• Resources for Patients and Families
• Fundraising

National Initiatives

An American Hospital Association program launched in 2000, the Circle of Life Award honors innovative US programs in palliative and end-of-life care.

A project based at Northwestern University’s Feinberg School of Medicine that educates health care professionals on the essential clinical competencies in palliative care.

This program provided hospitals and health systems across the country with the opportunity to visit palliative care learning centers in order to improve and advance new, hospital-based end-of-life services.

IPPC is both an education and a quality improvement effort, aimed at enhancing family-centered care for children living with life-threatening conditions.

A coalition of 32 key public and private health care stakeholder organizations convened by the National Quality Forum to work together toward a core set of priorities for improvement through proven ways to eliminate harm, waste, and disparities.

PCPC offers expert support to hospitals, nursing homes, health systems, hospices, and other organizations that serve individuals nearing the end of life. A key goal of its activities is to gather information and create a common database that can help improve the experience of dying patients and their families everywhere.

The POLST Paradigm program is designed to improve the quality of care people receive at the end of life. It is based on effective communication of patient wishes, documentation of medical orders on a brightly colored form, and a promise by health care professionals to honor these wishes.

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NY Palliative Care Information Act

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Guidelines

The NCP represents a coalition of leading palliative care organizations working to heighten awareness of palliative care as an option in treating those with a life-limiting or chronic debilitating illness, condition or injury, and to raise public understanding of the growing need for such care. The NCP developed Clinical Practice Guidelines for Quality Palliative Care as a national consensus of what the standard of good palliative care should be.

• Customer Satisfaction Metrics Consensus Recommendations
• Inpatient Unit Operational Metrics
• Palliative Care Consultation Service Metrics
• Key Operational Features for Hospital Palliative Care Programs

This project led to the endorsement of a comprehensive framework for evaluating the quality of palliative and hospice care; a set of 38 preferred practices for delivering high-quality palliative and hospice care; and 9 recommendations for research to improve upon the measurement and evaluation of palliative and hospice care

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Research

NPCRC is committed to stimulating, developing, and funding research directed at improving care for seriously ill patients and their families.

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Scorecards and Studies

Hospital palliative care consultation teams have been shown to improve care for adults with serious illness. This study examined the effect of palliative care teams on hospital costs.

The CAPC 2008 report card shows that the nation gets an overall grade of C in access to hospital palliative care. Although half of the 50 states receive a grade of A or B, almost 40 percent get a grade of C – and more than 20 percent receive grades of D and F. Only three states earn an A: Vermont, Montana, and New Hampshire.

A case study of Mount Carmel Health and their development of an Inpatient Palliative Care Service. Mount Carmel is a large nonprofit health care system in Central Ohio with three hospitals, two educational institutions and a hospice program. (Article provided courtesy Journal of Palliative Medicine).

For more than 20 years, the Dartmouth Atlas Project has documented glaring variations in how medical resources are distributed and used in the US. Atlas reports, publications, and interactive tools provide comprehensive information and analysis about national, regional, and local markets, as well as individual hospitals and their affiliated physicians. Because the project is based on Medicare data, findings often impact end-of-life care research and discussion.

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Clinical Resources

This website provides essential, comprehensive and independent information for health professionals about the use of drugs in palliative care.

This website offers links to a variety of assessment and evaluation tools.

Here you will find Program Evaluation Tools developed or used by PEELC grantees and a resource of validated, published Key Clinical Assessment and Research Tools used in the field of palliative care.

This website includes databases on health plan formularies, 2005 ECD-9 CM codes and PDA integration into bedside care.

Developed by the Department of Pain Medicine and Palliative Care at the Beth Israel Medical Center in New York City, this site provides healthcare professionals with accurate, reliable information on treatment options. The Pain Multimedia Library provides the latest information and treatment options for common pain syndromes. Palliative Care for Advanced Disease (PCAD) Pathway was prepared to guide the interdisciplinary management of imminently dying inpatients. Clinical Management of Neuropathic Pain: A Problem-Based, Interactive Module teaches how to assess a patient with neuropathic pain and develop a multimodal therapeutic strategy.

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Resources for Patients and Families

Aging with Dignity is a national non-profit organization, inspired by the life and work of Mother Teresa of Calcutta, whose mission is to affirm and safeguard the human dignity of individuals as they age and to promote better care for those near the end of life. Introduced in 1997, Five Wishes is now available in 23 languages.

Better Ending is a website that helps consumers plan in advance for serious illness and ensure one’s final wishes. The site’s Guide for a Better Ending lays the groundwork for discussing end-of-life issues, offering tools such as a health care proxy form and personal wishes statement.

A program of the National Hospice and Palliative Care Organization (NHPCO), Caring Connections is a national consumer and community engagement initiative to improve care at the end of life. The program provides free resources on end-of-life care issues and services, including information on hospice providers and state-by-state advance directives.

This site, provided by the Center to Advance Palliative Care (CAPC), offers clear, comprehensive palliative care information for people coping with serious, complex illness. Key components of the site include a Palliative Care Directory of Hospitals, a detailed description of what palliative care is and how it is different from hospice, and an interactive questionnaire to assist people in determining whether palliative care is appropriate for them or their loved ones.

This site has been developed by AAHPM to reach out directly to patients and their families who might benefit from specialized medical care.

A four-part PBS series produced by Bill Moyers that follows him on a journey across the country from hospitals to hospices to homes to capture some of the most intimate stories ever filmed and the most candid conversations about end-of-life care ever shared with a television audience.

A four-part National Public Radio documentary produced by WBUR in Boston and featuring Jim Conway and Diane Meier, as well as other leaders in the field, including Joanne Lynn.

National Cancer Institute FactSheet: Palliative Care in Cancer

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Fundraising

Fund Palliative Care

Created by The Collaborative to Advance Funding for Palliative Care (CAFPAC), Fund Palliative Care is part of a new initiative to share palliative care grantmaking concepts and success stories, and to stimulate higher levels of funding in palliative care. CAFPAC is a growing group of funders, from across the U.S., who are committed to advancing funding for PalCare. CAFPAC also provides a Snapshot Report of original research on the state of palliative care philanthropy in the U.S. from over a two-year period.

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