Managing Dysphagia in the Adult Approaching End of Life

see also: Main Article | AHN Burdens/Benefits

Providence Saint Joseph Medical Center; Burbank, California
Alyssa Levy, MS, CCC-SLP; Linda Dominguez-Gasson, MCD, CCC-SLP;
Elizabeth Brown, MA, CCC-SLP; and Cara Frederick, MS, CCC-SLP

References and Resources

1. American Academy of Hospice and Palliative Medicine. (2001). Statement of the Use of Nutrition and Hydration: Position Statement. Glenview, IL: Author.
2. Angus, F. & Burakoff, R. (2003). The percutaneous endoscopic gastrostomy tube:  Medical and ethical issues in placement.  American Journal of Gastroenterology, 98(2), 272-277.
3. Callahan, C.M., Haag, K.M., & Weinberger M. (2000).  Outcome of percutaneous endoscopic gastrostomy among older adults in a community setting. Journal of the American Geriatric Society, 48(9), 1048-54.
4. Callahan, D. (1993).  On feeding the dying.  The Hastings Center Report, 22.
5. Croghan, J.E., Burke E.M., Caplan, S., & Denman, S. (1994).  Pilot study of 12-month outcomes of outcomes of nursing home patients with aspiration on videofluoroscopy.  Dysphagia, 9(3), 141-146.
6. Daly, B.J. (2000).  Special challenges of withholding artificial nutrition and hydration. Journal of Gerontological Nursing, 26(9), 25-31. 
7. Daly, B.J., Weintraub, F.N., Shou, J., Rosato, E.F., & Lucia, M. (1995).  Enteral nutrition during multimodality therapy in upper-gastrointestinal cancer patients.  Annals of Surgery, 1221(4), 327-338.
8. Hoefler, J.M. (2000).  Making decisions about tube feeding for severely demented patients at the end of life:  Clinical, legal, and ethical considerations.  Death Studies, 24, 233-254.
9. Fiatarone, M.A., O’Neill, E.F., Doyle Ryan, N., Clements, K.M., & Solares, G.R. (1994).  Exercise training and nutritional supplementation for physical frailty in very elderly people.  New England Journal of Medicine, 330(25), 1769-1775.
10. Finucane T.E. (1995).  Malnutrition, tube feeding and pressure sores:  Data are incomplete.  Journal of the American Gerontological Society, 43, 447-451.
11. Finucane, T.E., Christmas, C., & Travis, K. (1999).  Tube feeding in patients with advanced dementia:  A review of the evidence.  American Medical Association, 282(14), 1365-1370.
12. Groher, M.E. (1990).  Ethical dilemmas in providing nutrition.  Dysphagia, 5(2), 102-109. 
13. Jakonen, S. (1997).  Dehydration and hydration in the terminally ill:  Care considerations.  Nursing Forum, 32, 5-13.
14. McCann, R.M., Hall, W.J., & Groth-Junker, A. (1994). Comfort care for terminally ill patients:  The appropriate use of nutrition and hydration.  Journal of the American Medical Association, 272(16), 1263-1266.
15. Mitchell, S.L., Tetroe, J., & O’Connor, A.M. (2001).  A decision aid for long-term tube feeding in cognitively impaired older persons. Journal of American Geriatrics Society, 49(3), 313-316.
16. Mitchell, S.L., Kiely, D.K, & Lipsitz, L.A. (1998).  Does artificial enteral nutrition prolong the survival of institutionalized elders with chewing and swallowing problems.   Journal of Gerontology, Medical Sciences, 53(3), M207-M213.
17. Mitchell, S.L., Kiely, D.K, & Lipsitz, L.A. (1997).  The risk factors and impact on survival of feeding tube placement in nursing home residents with severe cognitive impairment. Archives of Internal Medicine, 157(3), 327-332. 
18. Post, S.G. (2001).  Tube feeding and advanced progressive dementia.  Hastings Center Report, 31(1), 36-42.
19. Printz, L.A. (1988).  Is withholding hydration a valid comfort measure in the terminally ill?  Geriatrics, 43(11), 84-88.
20. Printz, L.A. (1992). Terminal dehydration:  To give or not to give intravenous fluids.  Cancer Nursing, 152, 697-700.
21. Rabeneck, L., McCullough, L. B., & Wray, N. P. (1997).  Ethically justified, clinically comprehensive guidelines for percutaneous endoscopic gastrostomy tube placement.  Lancet, 349(9050), 496-498.
22. Sanders, D. S., Carter, M. J., D’Silva, J., James, R.P., & Bolton, R.P. (2000).  Survival analysis in percutaneous endoscopic gastrostomy feeding:  A worse outcome in patients with dementia.  The American Journal of Gastroenterology, 95(6), 1472-1475.
23. Schmitz, P. (1991).  The process of dying with and without feeding and fluids by tube.  Law, Medicine, & Health Care, 19(1-2), 23-26.
24. Schwartz, D. B. & Dominguez-Gasson, L. J. (1997).  Aspiration in a patient receiving enteral nutrition.  Nutrition in Clinical Practice, 12(1), 14-19.
25. Sharp, H.M. & Genesen, L.B. (1996).  Ethical decision-making in dysphagia management.  American Journal of Speech-Language Pathology, 5(1), 15-22.
26. Slomka, J. (2003).  Withholding nutrition at the end of life:  Clinical and ethical issues.  Cleveland Clinic Journal of Medicine, 70(6), 548-552.
27. Smith, S.A. & Andrews, M. (2000).  Artificial nutrition and hydration at the end of life. MEDSURG Nursing, 9(5), 233-247.
28. Sullivan, R.J. (1993).  Accepting death without artificial nutrition or hydration.  Journal of General Internal Medicine, 8(4), 220-224.  
29. Zerwekh, J.V. (1997).  Do dying patients really need IV fluids?  American Journal of Nursing, 97(3), 26-30.
30. Zerwekh, J.V. (1983).  The dehydration question. Nursing 83(1), 47-51.