Resources for Viewers
Advance Directives Hospice/Palliative Care Patient & Family Help Bone Marrow Transplants
Advance Directives
- Caring Connections Provides a basic primer on advance directives as well as state specific forms that you can download.
- Five Wishes Provides instructions on how to create a living will that claims to address your "personal, emotional and spiritual needs as well as your medical wishes" in a user-friendly way. The Five Wishes document meets the legal requirements of 42 states.
- Myths and Facts Information about advance directives from the American Bar Association [PDF].
- Laws Legislation on advance directives vary by state. FindLaw has put together a brief guide to the laws in all 50 states.
- The Physician Orders for Life Sustaining Treatment (POLST) Paradigm This was designed as a supplement to traditional advance directive documents. POLST is intended for patients with advanced frailty and/or serious illness. The form, which must be filled out with a physician, covers a range of patient preferences including CPR, resuscitation, the use of antibiotics, artificial nutrition and comfort care.
Hospice/Palliative Care
- Caring Connections Some practical guidance on how to locate, choose and pay for a hospice provider.
- The National Hospice and Palliative Care Organization Representing 80% of hospices in the United States, the organization provides background information, links to hospice resources and a searchable hospice locator by state.
- Hospice Foundation of America A national leader in hospice advocacy, the group provides resources for families, research and policy advocacy.
- Growth House Provides access to educational materials including books, journal articles and podcasts on end of life care.
- The Center to Advance Palliative Care The organization ranks the quality of palliative care by state.
Patient & Family Help
- Family Caregiver Alliance Founded more than 30 years ago, this organization is a comprehensive advocacy group that offers fact sheets, resource guides and public policy information for caregivers.
- The AARP's Caregiving Resource Center The center offers planning advice -- legal, financial and emotional -- for family members who are caring for parents or loved ones.
- Caring Connections The organization provides practical guides to on how to plan for caregiving and how to cope -- both financially and emotionally -- with serious illness.
- Family Care Navigator It offers an easy to use state-by-state guide to resources for family caregivers.
- Well Spouse Association An organization dedicated to providing support to the spousal and partner caregivers of the critically ill and/or chronically disabled.
- CPR and DNR A primer of what is involved in CPR and DNR [do not resuscitate] from the Family Caregiver Association.
- Feeding Tubes and Ventilators A primer from the Family Caregiver Association.
- Life Support Methods An overview of the different methods of life support commonly used in ICUs from the Society of Critical Care Medicine.
- MY ICU CARE: The Society for Critical Care Medicine's guide for families navigating the world of ICUs.
- Ventilation Beyond the ICU A useful guide for patients and families facing long-term mechanical ventilation.
- Caring Bridge The organization allows patients, family and friends to create free websites that help people stay connected and informed during serious illness.
- Death with Dignity An advocacy organization dedicated to "provide options for the dying to control their own end-of-life care." In addition to legislative information, the site provides comprehensive guides for patients and families.
Bone Marrow Transplants
- Be the Match A national registry of more than 8 million bone marrow and umbilical cord blood donors. Information on how to donate, and how to locate donors is available on the site.
- The Blood and Marrow Transplant Information Network It offers detailed background information, resource guides and information on how to locate a donor, and a searchable database of transplant centers around the United States.
- The National Bone Marrow Transplant Link A resource designed to provide "social and emotional" support for patients, their caregivers and families. The site has a free online library of journal articles and other reference materials.
- Gift of Life It has bone marrow, blood stem cell and umbilical cord registries, and facilitates transplants for children and adults suffering from life-threatening diseases like leukemia and lymphoma.
- American Society of Hematology It promotes research care, education and advocacy for further understanding disorders affecting the blood, bone marrow, and the immunologic, hemostatic and vascular systems.
- The Leukemia and Lymphoma Society A society that funds blood cancer research, education and patient services with the goal to cure leukemia, lymphoma, Hodgkin's disease and myeloma.
- International Myeloma Foundation This foundation aims to improve the quality of life of myeloma patients while working towards prevention and a cure.
- Multiple Myeloma Research Foundation It pursues the development of myeloma treatments to extend the lives of patients and lead to a cure.
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