Organizations for Professionals
American Academy of
Hospice and Palliative Medicine (AAHPM)
4700 W. Lake Ave.
Glenview, IL 60025
847-375-4712 (phone)/877-734-8671 (fax)
This organization of physicians and other medical professionals is dedicated to excellence in palliative medicine, the prevention and relief of suffering among patients and families by providing education and clinical practice standards, fostering research, facilitating personal and professional development of its members, and public policy advocacy.
American Academy of
Pediatrics (AAP)
141 Northwest Point Blvd.
Elk Grove Village, IL 60007-1098
847-434-4000 (phone)/847-434-8000 (fax)
This organization is committed to the attainment of optimal physical, mental and social health and well-being for all infants, children, adolescents, and young adults.
Association of Pediatric Oncology Social Workers (APOSW)
The mission of this organization is to advance practice, extend knowledge and influence pediatric oncology policies and programs in order to enhance the emotional and physical well being of children with cancer and their families.
Association for Death
Education and Counseling (ADEC)
342 North Main Street
West Hartford, CT 06117-2507
860-586-7503 (phone)/860-586-7550 (fax)
ADEC is a multi-disciplinary professional organization dedicated to promoting excellence in death education, bereavement counseling, and care of the dying.
This foundation is a national non-profit organization whose mission is to educate, support, serve, and advocate for families of children with cancer, survivors of childhood cancer, and the professionals who care for them.
Child Life Council
11820 Parklawn Drive, Suite 202
Rockville, MD 20852-2529
301-881-7090 (phone)/301-881-7092 (fax)
This professional organization represents personnel from hospitals, clinics, university settings and others involved in the child life field. Play, recreation, education, self-expression, and theories of child development are used to promote psychological well-being and optimum development of children, adolescents and their families.
This organization was founded to create awareness of the needs of children with life-threatening conditions and their families, and of what children’s hospice care can do to meet those needs. Federal funding has been received to implement the Program for All-inclusive Care for Children and their Families (PACC) at six sites. The PACC model is aimed at eliminating and reducing obstacles while creating a continuum of care for children in hospice-type care.
Children's Oncology
Group (COG)
4600 East West Highway, Suite 600
Bethesda, MD 20814-3457
www.childrensoncologygroup.org
This is a National Cancer Institute-supported clinical trials cooperative devoted exclusively to childhood and adolescent cancer research. This group also conducts research to improve quality of life for children and adolescents with cancer and their families, including end of life care whenever necessary.
The American Medical
Association’s Education for Physicians on End-of-Life Care (EPEC)
Ethics Resource Center
American Medical Association
515 North State Street
Chicago,IL 60610
312-464-5257 (phone)/312-464-4799 (fax)
www.ama.assn.org/ama/pub/category/2719.html
This AMA initiative is designed to help physicians and their patients deal with the clinical and psychosocial issues at the end of life. This is accomplished by supporting physicians in their acquisition of the relevant knowledge and skills necessary for providing compassionate and competent end-of-life care. The EPEC curriculum, specifically, trains practicing physicians in core end-of-life care competencies.
www.childendoflifecare.org/home.html
This resource is a website that has been created as an educational resource for health professionals who are involved in providing palliative care at the end of a child’s life. The site provides an overview of the essential components for providing quality care, new interventions which promote support and comfort, and methods of care delivery that consider a family approach to care at the end of a child’s life.
End-of-Life Nursing
Education Consortium (ELNEC)
American Association of Colleges of Nursing
One Dupont Circle NW, Suite 530
Washington, DC 20036
202-463-6930 (phone)/202-785-8320 (fax)
The End-of-Life Nursing Education Consortium (ELNEC) is a comprehensive, national education program to improve end-of-life care by nurses. The project’s goals are to develop a core of expert nursing educators and to coordinate national nursing education efforts in end-of-life care.
End of Life Physician
Education Resource Center (EPERC)
Medical College of Wisconsin
8701 Watertown Plank Road
Milwaukee, WI 53226
414-456-4353 (phone)/414-456-6506 (fax)
EPERC is a central repository for educational materials and information about end of life issues. The purpose of EPERC is to assist physician educators and others at locating high-quality, peer-reviewed training materials, publications, conferences, and other opportunities about end-of-life issues.
Growth House, Inc.
San Francisco, CA
415-863-3045 (phone for health care providers)
The primary mission of Growth House is to improve the quality of compassionate care for people who are dying through public education and global professional collaboration. The web site is an international gateway to resources for life-threatening illnesses and end-of-life care.
This is a non-for-profit membership organization of children's hospitals, large pediatric units of medical centers and related health systems that work to ensure children's access to health care and the continuing ability of children's hospitals to provide services needed by children.
National Hospice and
Palliative Care Organization (NHPCO)
1700 Diagonal Road, Suite 625
Alexandria, VA 22314
703-837-1500 (phone)/703-837-1233 (fax)
NHPCO, an organization which advocates for the terminally ill and their families, has initiatied the Children's International Project on Palliative/Hospice Services (ChIPPS) program. This initiative is the result of the commitment and passion of a group of pediatric palliative care experts who were seeking to improve the care of dying children and their families.
Pediatric Chaplains Network (PCN)
Chaplains from a variety of children's health care facilities and organizations are members of the Network. Each year a Chaplains Forum is sponsored and designed to offer chaplains an opportunity to share ideas and hear from presentations that will enhance their ministry.
Society of Pediatric
Nurses (SPN)
7794 Grow Drive
Pensacola, FL 32514
800-723-3902 (phone)/850-484-8762 (fax)
Their mission is to promote excellence in nursing care of children and their families through support of its members' clinical practice, education, research, and advocacy. The SPN has an End-of-Life task force.
www.compassionatepassages.org