End-of-life care is filled with emotions and tough questions which may require decision-making skills that
many of us just do not possess.
The purpose of this page and the resources presented are aimed at assisting in these tough decisions that one may be forced to make during trying times.
Both the clinician and the consumer will find any of a number of resources which will aid in discussing the many options available in presenting them
along with the information needed to make these very heart wretching decisions.
What is Palliative Care?
The Duke University School of Medicine Center for Palliative Care describes Palliative Care as specialized medical care for people with serious illnesses. This type of care focuses on providing patients with relief from the symptoms, pain, and stress of a serious illness - whatever the diagnosis.
The goal is to improve quality of life for both the patient and the family.
What is Hospice?
The Hospice Foundation of America describes Hospice as a special concept of care designed to provide comfort and support to patients and their families when a life-limiting illness no longer responds to cure-oriented treatments.
The goal of hospice care is to improve the quality of a patient's last days by offering comfort and dignity.
Local/National Information and Referral Services
Professional and Consumer Resources
Page Last Updated: February 25, 2016
- Advance Directives
Caring Connections provides free advance directives and instructions for each state that can be opened as a PDF.
- An ideal advance directive includes two parts—a “durable power of attorney for healthcare” (DPAHC) and a “living will.” The Foundation for Health in Aging provides this fact sheet to help you understand the how and why. Guide to Advance Directives Fact Sheet
- Assisted Senior Living
Helps seniors and caregivers locate adequate care and senior living facilities. Site includes options to search by state and type of facility.
- Building a Hospital-Based Palliative Care Program
Outlines the five stages involved in starting and implementing a quality palliative care program.
- Caregiver Resources
Contains caregiving information including related organizations, links to websites, hospice, advocacy, prescription assistance, respite resources, training for caregivers, and volunteer agencies.
- Caring Connections
Provides caregiving resources, and a listing of state advanced directives to help people make decisions about end-of-life care. Brings together community, state, and national partners working to improve end-of-life care. Provides downloadable advance directive documents and instructions for each state.
- Center for Medicare Advocacy (CMA) - Hospice
Find advocacy tips, coverage information, legislative information, and more for the healthcare professional.
- Center to Advance Palliative Care (CAPC)
Access essential palliative care tools, education, resources and training for health care professionals.
- CMS Hospice Center
Provides information on regulations and related transmittals, enrollment and participation, and CMS Manuals relating to hospice services and benefits.
- (Palliative Care) Fast Facts and Concepts / Palliative Care Network of Wisconsin (PCNOW)
(Palliative) Care Fast Facts and Concepts--originally published by EPERC from 2000-2014 is now being hosted with valuable information from PCNOW.
- Getting Started: Guidelines and Suggestions for those Starting a Hospice / Palliative Care Service, 2nd ed.; 2009. "new"
This series of short papers has been prepared for those interested in starting palliative care services.
Provides a searchable database to locate hospices in North America and the U.S. territories. Serves as a clearinghouse for consumers seeking information on choosing, paying for, and discussing hospice care. Offers an Ask the Expert service for questions on hospice care.
- Making Medical Decisions for Someone Else: A How-To Guide "new"
The American Bar Association and its Commission on Law and Aging created this handbook for anyone who may make health care decisions for someone else—or might at some future point.
- MedlinePlus: Hospice Care
Provides links to resources related to hospice, including research, news, specific conditions, articles, directories, and organizations.
- National Consensus Project (NCP) Clinical Practice Guidelines for Quality Palliative Care, 2nd ed., 2009.
This newest edition from the National Consensus Project for Quality PalliativeCare (NCP) may be considered a blueprint for the essential foundation for palliative care providing for assessment and treatment of pain and other symptoms; help with patient-centered communications and decision-making; and, coordination of care.
Adobe Acrobat Reader required.
- National Family Caregiver Support Program (NFCSP)
Provides grants to States and Territories, based on their share of the population aged 70 and over, to fund a range of supports that assist family and informal caregivers to care for their loved ones at home for as long as possible.
- National Home and Hospice Care Survey
Presents results of 2007 National Home and Hospice Care Survey. Provides publications, fact sheets, methodology, and data. This will be replaced in 2012 when the National Center for Health Statistics will launch the new National Survey of Long-Term Care Providers (NSLTCP).
- Physician Orders for Life-Sustaining Treatment (POLST) "new"
Physician Orders for Life-Sustaining Treatment (POLST) is a promising program to elicit and honor the treatment goals of people with advanced progressive illness or frailty. The two page brief is available in both english and spanish
- Promoting Excellence in End-of-Life Care
Dedicated to long-term changes to improve health care for dying people and their families. Targets special populations of patients including rural, Alaskan villages, and American Indian tribes.
- A Quick Guide to Cultures and Spiritual Traditions
One of the main purposes of this self-learning guide from the Association of Professional Chaplains is to help identify and demonstrate appropriate cultural and spiritual sensitivity in one’s approach to providing care; while describing the various components in culture and spirituality.
- Rural Health Research: Hospice and Palliative Care
Provides summaries of current and completed rural health research projects and related publications addressing the topic of hospice and palliative care, produced by the Office of Rural Health Policy's funded rural health research centers.
- Rural Palliative Care Network
Part of Fletcher Allan Health Care, with the University of Vermont. Delivers pain and symptom management, advanced care planning, and end-of-life care for people with life-threatening illness.
- State-by-State Report Card on Access to Palliative Care in Our Nation's Hospitals
Provides a pull-down menu by state, searchable by hospital type. Includes public, sole, large, mid-size, and small hospital groups.
- THRIVE Online
The Health and Resources Initiative for Veterans Everywhere (THRIVE) is designed to provide outreach and services to vulnerable and underserved veterans, including rural and homeless veterans. THRIVE online is a
collaboration between Stanford University and the VA Palo Alto Health Care System to provide videos of rural health experts, rural Veterans, and outreach workers, plus fact sheets, a searchable database, and articles on palliative care.
- TIME: Toolkit of Instruments to Measure End-of-Life-Care
These measurement tools originallycompiled at Brown University should identify opportunities for improving medical care, examining the impact of interventions or demonstration programs. The AFTER-DEATH BEREAVED FAMILY MEMBER INTERVIEW resource is also a product of the TIME.
- VA Office of Geriatrics and Extended Care Hospice & Palliative Care
Provides information for Veterans of all ages regarding geriatrics and extended care, also known as long term care.