Hospice Links
Organizations/General Information
Carolinas Center for Hospice and End of Life Care
Contact person: Karen Robinson 1-800-662-8859
American Academy of Hospice and Palliative Care Medicine
Contact (847) 375-4712 or E-mail: info@aahpm.org
Last Acts Campaign to Improve End-of-Life Care
Last Acts, sponsored by the Robert Wood Johnson Foundation, is a membership organization committed to raising awareness of the need to improve care of the dying and sharing issues and ideas at the national, state and local levels. Once at the site, click on the "Getting the Most from this Web Site" link at the bottom of the home page. Registering will give you full access (without charge). Enrolling your organization as a partner will yield yet more resources and benefits.
Partnership for Caring: America's Voices for the Dying
Partnership for Caring is a national, nonprofit organization devoted to raising consumer expectations and increasing demand for excellent care at the end of life. The "Partnership" is a consumer movement dedicated to increasing American's awareness of the challenges and opportunities associated with life's end, and to removing the obstacles and building the skills required to meet those challenges and realize those opportunities.
National Hospice and Palliative Care Organization (NHPCO)
The National Hospice and Palliative Care Organization is the largest nonprofit membership organization representing hospice and palliative care programs and professionals in the United States. The organization is committed to improving end of life care and expanding access to hospice care with the goal of profoundly enhancing quality of life for people dying in America and their loved ones.
The American Association for Death Education and Counseling
A professional organization dedicated to promoting excellence in death education, bereavement counseling and care of the dying.
Planning For The "End Of Life" Care Program
With all of the changes and advances in medicine, there is more talk about issues concerning life and death. We all know that we can't get out of this world alive. But at the same time, we Americans avoid discussions about life and death. Another means of achieving the freedom to focus on the present is to communicate your desires about life and death.
Compassion In Dying
This advocacy group is working with the health care community for changes in medical care for the terminal ill. This group is involved in legalization of assisted dying, as well as judicial and legislative efforts to improve pain management and to sanction providers who fail to treat pain.
The National Family Caregivers Association
Offers practical information and answers to frequently asked questions (FAQs), as well as "A Guide to Improving Doctor/Caregiver Communication."
National Public Radios Series Exploring Death in America
An exceptionally wide-ranging and well-balanced collection of "voices" and resources including bibliographies, interviews, sample chapters from important texts and personal stories.
On Our Own Terms - Moyers on Dying.
This groundbreaking PBS series, first aired in the fall of 2000, spurred an ongoing program of community outreach.
Growth House
This group is an international gateway to resources for life-threatening illness and end-of-life issues. The primary mission is to improve the quality of compassionate care for people who are dying through public education about hospice and home care, palliative care, pain management, death with dignity, bereavement, and related end of life topics.
National Association for the Terminally Ill
The National Association for the Terminally Ill gives financial assistance to the children and families of those suffering from a terminal illness whose life expectancy is two years or less. The association's goal is to help these families regain financial independence. NATI services two major programs, the Life-Threatening Illness Program and Children and Family Cancer Program.
Center to Advance Palliative Care
Search the latest resources in palliative care available to hospitals and health care systems.
Physician/Pain Management
American Academy of Hospice and Palliative Care Medicine
Contact (847) 375-4712 or E-mail: info@aahpm.org
Last Acts
From the Robert Wood Johnson Foundation, Last Acts is a call-to-action campaign designed to improve care at the end of life. Their goals are to bring end-of-life issues out in the open and to help individuals and organizations pursue the search for better ways to care for the dying.
American Medical Association, Institute for Ethics
EPEC (Education for Physicians on End of Life Care Project) offers information on end-of-life care education for professionals.
Americans for Better Care of the Dying
Founded in 1997, Americans for Better Care of the Dying (ABCD) is an organization dedicated to ensuring that all Americans can count on good end of life care. This group is committed to ensuring that every person experiences comfort, dignity and meaning at the end of life, and that every loved one knows that life came to a close in a dignified and meaningful way. By sharing expertise, building collaborative networks and public commitment, ABCD seeks to achieve substantive health care reform through improved policy, professional practice and care reimbursement.
Supportive Care of the Dying: A Coalition for Compassionate Care
A non-profit coalition committed to bring about cultural change regarding pain and symptom management and relief of suffering for persons living with and affected by life- threatening illness.
The American Pain Foundation
Provides a survey to screen yourself for depression and access to on-line support.
Palliative Care Overview
Provides an overview of palliative care and pain treatment.
The Education for Physicians on End-of-life Care (EPEC)
project is designed to educate all physicians on the essential clinical competencies required to provide quality end-of-life care. A comprehensive set of training materials is available.
The End of Life Physician Education Resource Center (EPERC)
is a central repository for educational materials and information about end of life (EOL) issues designed for physicians and other educators. After registration one has full access to the "educational resources" link, including the invaluable series of one-page publications called "Fast Facts."
MediCaring
is "the term we use for the idea that the health care system in the United States could find the patients who are living the end of life with serious and complex illness, tailor services to their priorities, and pay providers in a way that encourages quality care at a price that is tolerable to the community." This site offers resources and tools, as well as an online conference about MediCaring.
The National Advanced Illness Coordinated Care (NAICC)
Programs provide the practical tools to make this happen, highlighting the relationship between understanding the nature of facing advanced illness and searching for meaning in life.
Dale Larson's Web Page
is an excellent site for hospice professionals. This site provides numerous tips from Dr. Larson's "Great Ideas" sessions given at national hospice management conferences. He provides practical ideas in clinical care, bereavement, volunteer management, marketing, fundraising, community education, and much more.
Hospice Care: The Common Pathway
This site is by Steven Baumrucker, MD, listing articles on hospice care and links. This site is dedicated to information about the care of the terminally ill.
Caregiving
Caregiver Resource Directory
Department of Pain Medicine and Palliative Care New York Beth Israel Medical Center.
New York Beth Israel Medical Center has created the resource directory to help family caregivers feel less alone and overwhelmed.
The Family Caregiver Alliance
Provides resources, including information about specific diseases and related public policy news.
690 Market Street, Suite 600
San Francisco, CA 94104
(415) 434-3388
Empowering Caregivers
A comprehensive site offering information, emotional and spiritual support through featured expert columns, articles on caregiving, journal exercises, a newsletter, forums, chats, healing circle, caregiver and caregiving spotlights, inspiration, humor and more.
Aging with Dignity
A privately-funded, non-profit organization that advocates for the needs of elders and their caregivers, with a particular emphasis on improving care for those at the end of life.
Grief/Bereavement
AARP
Information for widows and widowers.
GriefNet
An Internet community of persons dealing with grief, death, and major loss.
Bereavement
A Magazine of Hope and Healing has been designed to be a "support group in print" - a friend who arrives in the mailbox six times each year
Willowgreen
This site offers information and inspiration in the areas of illness and dying, loss and grief, healthy caregiving, life transition and spirituality. Willowgreen is the creation of James E. Miller, writer and photographer, trainer and speaker, grief counselor and clergyman.
WidowNet
This is an information and self-help resource for, and by, widows and widowers. Topics covered include grief, bereavement, recovery, and other information helpful to people, of all ages, religious backgrounds and sexual orientations, who have suffered the death of a spouse or life partner.
Gilda's Club Worldwide
Ths site offers emotional and social support to those living with cancer and their families.
Spirituality/Faith/Last Rites
Ethical Wills
This site offers a way to leave your legacy by writing down your values and beliefs.
Compassion Sabbath
An interfaith initiative to help clergy and congregations minister to seriously ill and dying people.
1021-1025 Jefferson St.
Kansas City, MO 64105
816 221-1100
American Association of Pastoral Counselors
This site provides information about pastoral counseling, resources and a searchable directory of pastoral counselors.
Funerals: A Consumers Guide
Published by the Federal Trade Commission.
The Funeral Consumers Alliance
This site provides information for consumers about funeral ethics, affordability and legal issues.
The National Funeral Directors Association
Offers useful consumer guidelines, demographic information and helpful links to other national and international organizations.
