The Sequatchie Valley
This is a listing of organizations that deal directly or indirectly with end-of-life medical care. Please scroll down to locate them. Postal addresses, telephone and fax numbers, and e-mail addresses are generally available at the websites shown below. These organizations perform the following functions:
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Categories are shown below in alphabetical order.
Accreditation or Rating of of Health Care Organizations
The Joint Commission for the Accreditation of Health Care Organizations evaluates and accredits nearly 20,000 health care organizations: hospitals, health care networks, home health care organizations, long term care facilities, assisted living residencies, behavioral health organizations, ambulatory care providers, and clinical laboratories.
The National Committee for Quality Assurance accredits managed care organizations.
Leapfrog Group works with medical experts to identify problems and propose solutions that it believes will improve hospital systems that could break down and harm patients.
Healthgrades is a source for healthcare quality ratings and advisory services.
Bereavement
GriefNet offers support groups for adults to deal with grief, death, and major loss.
Its companion site -- kidsaid -- enables children and their parents to find information and ask questions about the same subjects.
Bioethics
The mission of the American Society of Law, Medicine & Ethics is to provide scholarship, debate, and critical thought. Its web site enables a search of articles published in The Journal of Law, Medicine & Ethics and The American Journal of Law & Medicine.
The Kennedy Institute of Ethics at Georgetown University houses the National Reference Center for Bioethics Literature and produces BIOETHICSLINE®, an online medical ethics database.
The Midwest Bioethics Center is dedicated to a health care delivery system anchored in respect for patients and their families and guided by ethical discourse.
The President's Council on Bioethics advises Federal agencies and others on bioethical issues arising from research on human biology and behavior and the application of that research.
Caregiving
Family Caregiver Alliance's programs and services include publications, consultation with businesses about programs for employees, research, policy development, education, and training.
The National Alliance for Caregiving supports family caregivers of the elderly and the professionals who serve them. Its three partners are the American Society on Aging, the Department of Veteran Affairs, and the National Association of Are Councils on Aging.
National Federation of Interfaith Volunteer Caregivers develops and supports local programs for the assistance of caregivers, financial management, respite care, and guardianship support.
The National Family Caregivers Association educates, supports, empowers and speaks up for Americans who care for chronically ill, aged or disabled loved ones.
Communication
Partnership for Caring is dedicated to fostering communication about complex end-of-life decisions among individuals, their loved ones and health care professionals.
Counseling
The American Association for Geriatric Psychiatry seeks to enhance the knowledge base and standards of practice of psychiatry through education and research and by advocating for the mental health needs of older Americans.
The American Psychological Association has free brochures, a referral service to psychologists, and a database of online resources.
Disease
National organizations concerned with specific diseases have combinations of the following services: newsletters and booklets, support groups, information about and referral to professionals and facilities, counseling, training materials, and advocacy. Most have local chapters. Unique characteristics are listed below.
The Amyotrophic Lateral Sclerosis Association (Lou Gehrig’s Disease)
The National Cancer Institute is a Federal agency rather than a private, nonprofit organization.
The American Association of Cardiovascular and Pulmonary Rehabilitation
The Cystic Fibrosis Foundation
The American Diabetes Association
The National Institute of Diabetes & Digestive & Kidney Diseases is a Federal Government clearinghouse for information about diseases of the kidney and urologic system.
The HIV/AIDS Treatment Information Service is a resource for Federally approved treatment guidelines for HIV and AIDS.
Huntington’s Disease Society of America
The Leukemia & Lymphoma Society
The National Mental Health Association
The Muscular Dystrophy Association
The National Multiple Sclerosis Society
The American Parkinson Disease Association
The National Parkinson Foundation
The Sickle Cell Association of America
The Spina Bifida Association of America
The National Stroke Association
Home Health
The National Association of Home Care is a trade association of home care agencies, hospices, and home care aide organizations. Its web site features statistics and technical papers about home care and hospice.
Hospice
The National Hospice and Palliative Care Organization develops public and professional educational programs and materials, provides technical informational resources, conducts research, and monitors Congressional and regulatory activities. Its web site permits finding a hospice as well as statistical and other research.
The Hospice Association of America advocates the interests of hospices before Congress, regulatory agencies, other national organizations, the courts, the media, and the public.
Information and Referral
Growth House provides information and referral services for agencies working with death-and-dying issues.
Medicare
The Medicare Rights Center educates the public about Medicare issues, identifies and addresses systemic problems in that program, empowers people on Medicare to help themselves, and takes action on their behalf.
Nursing Homes
The Picker/Commonwealth Program on Long-Term Care for Frail Elders studies the evolving long-term care needs of elderly Americans and strategies to meet those needs. A major focus is upon the 1.6 million people who reside in 16,800 nursing home facilities.
Organ Donations
The United Network for Organ Sharing has the contract issued by the U.S. Department of Health and Human Services to administer the national system for organ matching and distribution.
Its web site has links to hospitals where transplants are performed; organ procurement organizations and tissue banks; organizations that promote and support organ donation; organizations for transplant professionals; a patient-oriented site (http://www.patients.unos.org); and other transplant information sites.
Its statistical reports deal with waiting list information; transplant programs and organ procurement organizations; organ acceptance rates both nationally and by center; donor and recipient characteristics; survival rates; cadaveric organ disposition; and other subjects.
Pain Management
The American Academy of Pain Management is both physician-based and a multidisciplinary society of pain management professionals. It credentials practitioners, performs evaluations of pain management programs, and operates the National Pain Data Bank.
The American Pain Foundation is a patient information, education and advocacy organization dedicated to the cause of pain prevention and effective pain management.
Public Policy
Americans for the Better Care of the Dying is dedicated to social, professional, and policy reform aimed to improve the care system for patients with serious illness, and their families.
Compassion in Dying provides client service, legal advocacy, and public education. It aims to improve pain and symptom management, increase patient empowerment, and expand end-of-life choices to include aid-in-dying for terminally ill, mentally competent adults.
Death With Dignity National Center seeks to increase the choices and autonomy of terminally ill patients.
The Hospice Foundation of America is a policy institute on end-of-life issues as well as overall health policy. It offers books, videos, a newsletter on bereavement, and other publications and resources. The web site has a detailed reading list as well as descriptions, contact information, and links to organizations and other resources.
Last Acts is a call-to-action campaign to improve care at the end of life.
Partnership for Caring is devoted to raising consumer expectations and increasing the demand for excellent care at the end of life.
The Project on Death in America seeks to understand and transform the culture and experience of dying and bereavement in the U.S. through support for initiatives in research, education, the arts, and public policy.
Promoting Excellence in End-of-Life Care fosters long-term changes in health care institutions to substantially improve care for dying persons and their families.
Copyright 2003 by Whitney Durand. Used with permission.