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 Children’s Palliative Care (ACT)
Brunswick Court, Brunswick Square
Bristol, BS2 8PE
0117 916 6422 (phone)
0117 916 6430 (fax)
A UK-based organization that supports children’s palliative care professionals and families, and provides a national helpline and information service. ACT produces a range of publications and resources, including care pathways for life-limited or life-threatened children and young people, and publishes the International Journal for Children’s Palliative Care.
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.
Bereavement Services
Gundersen Lutheran Medical Foundation, Inc.
1900 South Ave., Mailstop ALEX
La Crosse, WI 54601
608-775-4747 (phone)
800-362-9567, ext. 54747 (toll-free phone)
Bereavement and Advance Care Planning Services is a department of Gundersen Lutheran Medical Foundation, Inc., a not-for-profit corporation located in La Crosse, WI. In 1981, Bereavement Services developed a comprehensive approach to caring for families whose babies died during pregnancy or shortly after birth. The program known as Resolve Through Sharing (RTS), was unique in healthcare. Based on their experience and research, they found that these skills can be learned. Today, more than 30,000 healthcare professionals have been trained in the RTS approach. They have developed other bereavement courses and a wide range of bereavement resources to support continued bereavement care and education throughout the world.
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 Hospice and Palliative Care Coalition
65 Nielson St. #108
Watsonville, CA 95076
831-763-3070 (phone)/831-768-9102 (fax)
The Coalition serves as a reminder that children are not little adults and when they are seriously ill, their medical and emotional needs are unique and must be honored within the medical system. It provides training and support to hospice teams so that when they are caring for a dying child they are able to meet the medical, emotional and spiritual needs of the child and the family. They also work with children’s hospitals, home health agencies, hospices and community- based organizations to promote policies and all-inclusive care programs that meet the complex medical, emotional, social, and practical needs of families who are experiencing great loss.
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.
International Association for Hospice and Palliative Care
5535 Memorial Dr. Suite F - PMB 509
Houston TX 77007 USA
936-321-9846 (phone)
866-374-2472 (toll-free phone)
713-880-2948 (fax)
Collaborates and works to improve the quality of life of patients with advanced life-threatening conditions and their families, by advancing hospice and palliative care programs, education, research, and favorable policies around the world.
International Children’s Palliative Care Network
ICPCN is administered by the Hospice Palliative Care Association of South Africa (HPCA)
Post Office Box 38785
Pinelands, 7430, South Africa
+27(0)215312094/5 (phone)/+27(0)215317917 (fax)
A worldwide network of individuals and agencies working with children and young people with life-limiting conditions. Believes that the total needs of life-limited children and their families should be met, to encompass physical, emotional, social, spiritual and developmental aspects of care.
National Association of
Children's Hospitals and Related Institutions (NACHRI)
401 Wythe Street
Alexandria, VA 22314
703-684-1355 (phone)/703-684-1589 (fax)
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.
Now I Lay Me Down to Sleep Foundation
2305 E. Arapahoe Road #220
Centennial, CO 80122
720-283-3339 (local phone)/877-834-5667 (toll-free phone)/720-283-8998 (fax)
Offers remembrance photography to parents suffering the loss of a baby with the gift of professional portraiture. The soft, gentle heirloom photographs of these beautiful babies are an important part in the family’s healing process by honoring their child's legacy. The Foundation administers a network of more than 7,000 volunteer photographers in the United States and 25 countries. At a family's request, a NILMDTS Affiliated Photographer will come to a hospital or hospice location and conduct a sensitive and private portrait session. The portraits are then professionally retouched and presented to the families on an archival DVD or CD that can be used to print portraits of their cherished baby.
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.
Pregnancy Loss and Infant Death Alliance (PLIDA)
P.O. Box 658
Parker, CO 80134
888-693-1435 (toll-free phone)/866-705-9261 (fax)
Supports health care practitioners and parent-advocates in their efforts to improve care for families who experience the death of a baby during pregnancy, birth, or infancy. Provides a formal network and a unified national presence to increase awareness and education on the emotional experiences and needs of bereaved families. Resource list, position statements, practice guidelines available. Sponsor of biennial National Perinatal Bereavement Conference www.perinatalbereavementconference.org
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