American Speech-Language-Hearing Association

Further References on Ethics Related Issues in Dysphagia, Communication Disorders, and Rehabilitation

Compiled by Lynne C. Brady Wagner and Helen Sharp

Reference Textbooks

Beauchamp, T.L., Childress, J.F. (1994). Principles of Biomedical Ethics: 4th Ed. New York: Oxford University Press.

Jonsen, A.R., Siegler, M., Winslade, W.J. (1992). Clinical Ethics. New York: McGraw-Hill.

Pannbacker, M., Middleton, G.F., Vekovius, G.T. (1996). Ethical Practices in Speech- Language Pathology and Audiology, Case Studies. San Diego, CA: Singular Publishing Group, Inc.

Pence, G. (1995). Classic Cases in Medical Ethics: 2nd Ed New York: McGraw-Hill.

Articles—Ethics, Dysphagia Management

Groher, M.E. (1990). Ethical dilemmas in providing nutrition. Dysphagia, 5, 102–109.

Segel, H.A., Smith, M.L. (1995). To feed or not to feed. American Journal of Speech-Language Pathology, 4, 11–14.

Sharp, I.R.A. (1996). Ethical Decision-Making in Managing Patients with Dysphagia. NSS Conference: Legal, Ethical, and Medicare Issues. San Francisco, CA, Dec. 7.

Sharp, H.M., Genesen, L.B. (1996). Ethical decision-making in dysphagia management. American Journal of Speech-Language Pathology, 5(l), 15–22.

Serradura-Russell, A. (1992). Ethical dilemmas in dysphagia management and the right to a natural death, Dysphagia, 7, 102–105.

Articles—Tube Feeding Issues

Ahronheim, J.C. (1996). Nutrition and hydration in the terminal patient, Clinical Geriatric Medicine, 12, 379–91.

American Gastroenterological Association Medical Position Statement. (1995). Guidelines for the use of enteral nutrition. Gastroenterology, 108, 1280–1301.

Carnes, M., Robbins, J.A., Gunter-Hunt, G. (1999). To Be or not tube: Physiological, Medical and Ethical Issues, SID 13 Short Course. ASHA Annual Meeting, San Francisco, CA (presentation)

Dresser, R. (1985). When patients resist feeding: Medical, ethical, and legal considerations. Journal of the American Geriatric Society, 33(11), 790–794.

Kayser-Jones, J. (1990). The use of nasogastric feeding tubes in nursing homes: Patient, family, and health care provider perspectives. Gerontological Society of America, 30(4), 469–479.

Lazarus, B.A., Murphy, J.B., Culpepper, L. (1990). Aspiration associated with long-term gastric versus jejunal feeding: a critical analysis of the literature. Archives of Physical Medicine and Rehabilitation, 71, 46–51.

Leff, B., Cheuvront, N., Russell, W. (1994). Discontinuing feeding tubes in a community nursing home. The Gerontologist, 34, 130–3.

Lipman, T.O. (1998). Grains or veins: is enteral nutrition really better than parenteral nutrition? A look at the evidence. JTEN, 22, 167–82.

Lo, B., Dornbrand, L. (1989). Understanding the benefits and burdens of tube feedings. Archives of Internal Medicine, 149, 1925–1926.

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, 53A: M207–213.

Norton, B., Homer-Ward, M., Donnelly, M.T., Long, R.G., Holmes, G.K.T. (1996). A randomized prospective comparison of percutaneous endoscopic gastrostomy and nasogastric tube feeding after acute dysphagic stroke. Bul, 312, 13–16.

O'Brien, L.A., Siegert, E.A., Grisso, J.A., Maislin, G., LaPann, K., Evans, L.K., Krotki, K.P. (1997). Tube feeding preference among nursing home residents. Journal of General Internal Medicine, 12(3), 64–371.

Park, P.H.P., Allison, M.C., Lang, J., Spence, E., Morris, A.J., Danesh, B.J.Z., Russell, R., Mille, P.R. (1992). Randomized comparison of percutaneous endoscopic gastrostomy and nasogastric tube feeding in patients with persisting neurological dysphagia. BMI, 104, 1406–9.

Peck, A., Cohen, C.E., Mulvihill, M.N. (1990). Long-term enteral feeding of aged demented nursing home patients. Journal of American Geriatric Society, 38, 1195–98.

Rabeneck, L., McCullough, L.B., Wray, N.P. (1997). Ethically justified, clinically comprehensive guidelines for percutaneous endoscopic gastrostomy tube placement. Lancet, 349(9050), 496–8.

Rabeneck, L., Wray, N.P., Peterson, N.J. (1996). Long-term outcomes of patients receiving percutaneous endoscopic gastrostomy tubes. Journal of General Internal Medicine, 11, 287–93.

Shailesh, L.T.C., Kadakia, C., Sullivan, H.O., Starnes, E. (1992). Percutaneous endoscopic gastrostomy orjejunostomy and the incidence of aspiration in 79 patients. American Journal of Surgery, 164, 114–118.

Sheiman, S.L. (1996). Tube feeding the demented nursing home resident. Journal of American Geriatric Society, 44, 1268–1270.

Articles—Risk of Aspiration

Ciocon, J.O., Silverstone, F.A., Graver, L.M., Foley, C.J. (1988). Tube feedings in elderly patients. Archives of Internal Medicine, 148, 429–443.

Cogen, R., Weinryb, J. (1989). Aspiration pneumonia in nursing home patients fed via gastrostomy tubes. American Journal of Gastroenterology, 84(12), 1509–1512.

Cowen, M.E., Simpson, S.L., Vettese, T.E. (1997). Survival estimates for patients with abnormal swallowing studies. Journal of General Internal Medicine, 12, 88–94.

Croghan, J.E., Burke, E.M., Caplan, S., Denman, S. (1994). Pilot study of 12-month outcomes of nursing home patients with aspiration on videofluoroscopy. Dysphagia, 9, 141–6.

Feinberg, M.J., Knebl, J., Tully, J. (1996) Prandial aspiration and pneumonia in an elderly population followed over 3 years. Dysphagia, 11, 104–9.

Fox, K.A., Mularski, R.A., Sarfati, M.R., Brooks, M.E., Warnecke, J.A., Hunter, G.C., Rappaport, W.D. (1995). Aspiration pneumonia following surgically placed feeding tubes. American Journal of Surgery, 170, 564–7.

Holas, M.A., DePippo, K.L., Reding, M.J. (1994). Aspiration and relative risk of medical complications following stroke. Archives of Neurology, 51, 1051–53.

Homer, J., Massey, E.W., Riski, J.E., Lathrop, D.L., Chase, K.N. (1988). Aspiration following stroke: clinical correlates and outcome. Neurology, 38, 1359–62.

Langmore, S.E., Texpenning, M.S., Schork, A., Chen, Y., Murray, J.T., Lopatin, D., Loesche, W.J. (1998). Predictors of aspiration pneumonia: how important is dysphagia? Dysphagia, 13, 69–81.

Olivares, L., Segovia, A., Revuelta, R. (1974). Tube feeding and lethal aspiration in neurological patients: a review of 720 autopsy cases. Stroke, 5(5), 654–657.

Patel, P.H., Thomas, E. (1990). Risk factors for pneumonia after percutaneous endoscopic gastrostorny. Journal of Clinical Gastroenterology, 12(4); 389–392.

Quill, T.E. (1989). Utilization of nasogastric feeding tubes in a group of chronically ill, elderly patients in a community hospital. Archives of Internal Medicine, 149, 1937–1941.

Schmidt, J., Holas, M., Halvorson, K., Reding, M. (1994). Videofluoroscopic evidence of aspiration predicts pneumonia and death but not dehydration following stroke. Dysphagia, 9, 7–11.

Articles—Withholding and Withdrawal of Food and Fluids

Billings, J.A. (1985). Comfort measures for the terminally ill. Is dehydration painful? Journal of the American Geriatric Society, 33, 808–10.

Callahan, D. (1983). On feeding the dying. Hastings Center Report, 13(5), 22.

Cranford, R.E. (1991). Neurologic syndromes and prolonged survival: When can artificial nutrition and hydration be forgone? Law, Medicine & Health Care, 19(1-2), 13– 22.

Goodhall, L. (1997). Tube feeding dilemmas: can artificial nutrition and hydration be legally or ethically withheld or withdrawn? Journal of Advanced Nursing, 25, 217–22.

Lynn, J., Childress, J.F. (1983). Must patients always be given food and water? Hastings Center Report, 13(5), 17–21.

McCann, R.M., Hall, W.J., Groth-Juncker, A. (1994). Comfort care for terminally ill patients: The appropriate use of nutrition and hydration. JAAA, 272(16), 1263–1266.

Printz, L.A. (1988). Is withholding hydration a valid comfort measure in the terminally ill? Geriatrics, 43(11); 84–88.

Schmitz, P. (1991). The process of dying with and without feeding and fluids by tube. Law, Medicine & Health Care, 19(1-2); 23–26.

Zerwekh, J.V. (1983). The dehydration question. Nursing, 1, 47–51.

Articles—External Assessments of Quality of Life

Bach, J.R., Tilton, M.C. (1994). Life satisfaction and well-being measures in ventilator assisted individuals with traumatic tetraplegia. Archives of Physical Medicine and Rehabilitation, 75(6); 626–632.

Gerhart, K.A., Kozoil-McLain, J., Lowenstein, S.R., Whiteneck, G.G. (1994). Quality of life following spinal cord injury: knowledge and attitudes of emergency care providers. Annals of Emergency Medicine, 23(4); 807–812.

Articles—Ethics, Communication Disorders and Decision-Making Capacity

Brady, L.C., Kirschner, K.L. (1995). Ethical issues for persons with aphasia and their families. Topics in Stroke Rehabilitation, 2(3), 84–87.

Caplan, A., Callahan, D., Haas, J. (1987). Ethical & Policy Issues in Rehabilitation Medicine (Hastings Center Report). Briarcliff, NY: Hastings Center.

Freedman, M., Stuss, D., Gordon, M. (1991). Assessment of competency: the role of neurobehavioral deficits. Annals of Internal Medicine, 115(3); 203–208.

Kagan, A. (1995). Revealing the competence of aphasic adults through conversation: a challenge to health professionals. Topics in Stroke Rehabilitation, 2(l); 15–28.

LaFond, D., Joanette, J., Ponzio, R., DeGiovani, R., Sarno, M.T. (Ed.s) (1993). Living with Aphasia: Psychosocial Issues. San Diego, CA: Singular Publishing Group.

Lo, B. (1990). Assessing decision-making capacity. Law, Medicine & Health Care, 18(3); 193–201.

Sarno, M.T. (1988). The case of Mr. M.: The selection and treatment of aphasic patients (Hastings Center Report). Briarcliff, NY: Hastings Center.

Sharp, H. (1995). A commentary on "Ethical issues for persons with aphasia and their families." Topics in Stroke Rehabilitation, 2(3); 84–87.

Tippett, D.C., Sugarman, J. (1996). Discussing advance directives under the patient self- determination act: a unique opportunity for speech-language pathologists to help persons with aphasia. American Journal of Speech-Language Pathology, 5(2); 31–34.

Articles—Ethical Issues in Healthcare Reimbursement

Cassidy, V.R. (1998). Ethical leadership in managed care: Creating a new vision. Nursing Leadership Forum, 3(2): 52–7.

Daniels, N., Sabin, J. (1998). The ethics of accountability in managed care reform. Health Affairs, 17(5): 50–64.

Eddy, D.M. (1997) Balancing cost and quality in fee-for-service versus managed care. Health Affairs, 16(3): 162–73.

Pearson, S.D. (2000) Caring and cost: The challenge for physician advocacy. Annals of Internal Medicine, 133: 148–153.

Articles—Additional

Dowdy, M.D., Robertson, C., Bander, J.A. (1998). A study of proactive ethics consultation for critically and terminally ill patients with extended lengths of stay. Critical Care Medicine, 26(2): 252–9.

Purtilo, R.B. (1988). Ethical issues in teamwork: the context of rehabilitation. Archives of Physical Medicine and Rehabilitation, 69, 318–22.

Sharp, H.M. (1995). Ethical decision-making in interdisciplinary team care. Cleft Palate Craniofacial Journal, 32(6): 495–9.

Singer, P.A., Martin, D.K., Kelner, M. (1999). Quality End-of-Life Care. JAMA, 218(2), 163–8.

Selected Readings—Family Education

Dunn, H. (1994) Hard Choicesfor Loving People. A&A Publishers, Inc. Herndon, VA.

Fein, E.B. (1997) Failing to Discuss Dying Adds to Pain of Patient and Family, The New York Times, March 5, A22.

Haynor, P.M. (1998) Challenges of advance directives. American Journal Nursing, 98(3); 26–32.

McCann, R.M., Hall, W.J., Groth-Juncker, A. (1994) Comfort care for terminally ill patients. JAMA, 272(16), 1263–1266.

Taylor, M.A. (1995). Benefits of dehydration in terminally ill patients. Geriatric Nursing, 16(5), 271–272.

Book Club Reading Suggestions

A Personal Mauer by Kenzauro Oe

The Spirit Catches You and You Fall Down by Anne Fadiman

Look Up for Yes by Julia Tavalaro, Richard Tayson

Learning by Heart AIDS and School Children in America's Communities by David L. Kirp

Range of Motion by Elizabeth Berg

The Cunning Man by Robertson Davies

Brainstorming: The Serper Method of Brain Recovery, Regrowth and Vitality by Lynn Lazarus Serper, Dale Koppel

The Diving Bell and The Butterfly: A Memoir of Life in Death by Jean-Dominique Bauby, Jeremy Leggatt

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