End of Life Resources and References
This list is not exhaustive and inclusion does not imply endorsement by ASHA.
Includes dementia care practice recommendations regarding end-of-life issues
American Academy of Hospice and Palliative Medicine
AAHPM provides information and resources about palliative medicine, prevention and relief of suffering, research in the area of palliative medicine and hospice, and public policy advocacy.
American Medical Association
Information and policies from the AMA regarding end-of-life issues
Centers for Medicare and Medicaid Services
Information about hospice care through Medicare
EPERC (End of Life/Palliative Education Resource Center)
Information about end-of-life issues in the form of "Fast Facts." Fast Facts are peer reviewed, one-page outlines of key information on important end-of-life clinical topics for end-of-life educators and clinicians.
Growth House, Inc.
Growth House, Inc. is an international gateway to resources for life-threatening illness and end-of-life care. Their mission is to improve the quality of compassionate care for people who are dying through public education and global professional collaboration.
Joint Commission on Accreditation of Healthcare Organizations
The Joint Commission Web site includes information about accreditation standards related to end-of-life.
National Association for Home Care and Hospice
NAHC represents the interests and concerns of home care agencies, hospices, home care aide organizations, and medical equipment suppliers.
National Consensus Project for Quality Palliative Care
Includes clinical practice guidelines for palliative care
National Hospice and Palliative Care Organization
The NHPCO's mission is to advance the art and science of end-of-life care. This eb site provides resources and information about hospice and end-of-life care.
Articles and References
AAHPM Position Statement on Artificial Nutrition and Hydration
Cantor, M. D., Kayser-Jones, J., & Finucane, T. E. (2002). To Force Feed the Patient With Dementia or Not To Feed: Preferences, Evidence-Base, and Regulation. Annals of Long-Term Care, 10(8), 45–48.
Cassiere, H. A. (1998). Aspiration pneumonia: Current concepts and approach to management. Medscape Respiratory Care, 2(1), 2–11.
End of Life: Helping With Comfort and Care (Resource from the National Institute on Aging)
Further references on ethics related issues in dysphagia, communication disorders, and rehabilitation
Joint Commission on Accreditation of Healthcare Organizations. (2004). Comprehensive Accreditation Manual for Hospitals: The Official Handbook. Oakbrook Terrace, IL: Author.
Kobylarz, F. A., Hernandez, G. G., & Hurwitz, E. (2002). Culturally-Sensitive Decision Making in End-of-Life Care, Annals of Long-Term Care, 10(8), 40–42.
Landes, T. L. (1999). Ethical Issues Involved in Patients' Rights to Refuse Artificially Administered Nutrition and Hydration and Implications for the Speech-Language Pathologist [PDF]. American Journal of Speech-Language Pathology, 8, 109–117.
Marik, P. E. (2001). Aspiration pneumonitis and aspiration pneumonia. New England Journal of Medicine. 344(9), 665–671.
Marik, P. E. & Kaplan, D. (2003). Aspiration pneumonia and dysphagia in the elderly. The Cardiopulmonary and Critical Care Journal, 124(1), 328–336.
McCann, R. M., Hall, W. J. & Groth-Juncker, A. (1994). Comfort care for terminally ill patients: Appropriate use of nutrition and hydration. Journal of the American Medical Association, 272(16), 1263–1266.
Miller, F. G. & Meier, D. E. (1998). Voluntary Death: A Comparison of Terminal Dehydration and Physician-Assisted Suicide. Annals of Internal Medicine, 128, 559–562.
Monteleoni, C. & Clark, E. (2004). Using Rapid-Cycle Quality Improvement Methodology to Reduce Feeding Tubes in Patients With Advanced Dementia: Before and After Study. British Medical Journal, 329(7464), 491–494. [Abstract]
Post, S. G. (2001). Tube feeding and advanced progressive dementia. Hastings Center Report, 31(1), 36–42.