American Speech-Language-Hearing Association

Response by Felicia Cohn

Ethics Roundtable: Rehabilitation and End-of-Life Care

Felicia Cohn, Ph.D.
Center to Improve Care of the Dying
George Washington University
Director, Program in Biomedical Ethics
Department of Health Care Sciences
George Washington University Medical Center

This scenario highlights the all too common acceptance of the "either/or." The care of persons nearing the end of life is ordinarily considered a choice: either to treat aggressively, to do "everything," to restore functional ability, to cure; or to provide "comfort care" only, to do nothing and await inevitable death. Human beings, however, are rarely that neat; we seldom fit well into black or white alternatives.

Mrs. J. does appear to be approaching the end of her life. She has repeatedly affirmed her refusal to use a feeding tube, but this is not to be confused with a desire to be left alone to die. Despite her prognostic status and refusal of a particular life-sustaining treatment, she continues to have real medical needs. When caring for a dying patient, it may become easy to forget that the patient continues to live and that whatever time remains is of value. Mrs. J. is entitled to live as meaningfully and comfortably as possible for the rest of her days. Services that improve a patient's experience of living while dying, services that will benefit the patient, should in no way be construed as wasted, unnecessary, or futile, even given the patient's shortened life span. If meaningful life includes eating and drinking, then good medical care should include efforts to make that possible. Speech-language pathologists incur this obligation just as other health care professionals do.

Unfortunately, Mrs. J. is not alone. We all face a health care system that is ill prepared to address the myriad of needs we develop as we age, become ill, and approach death. Regardless of what insurance companies mandate or health care professionals prefer, end-of-life care should be guided by patient and family visions of what it means to live well until death. The end of life is no less precious and important than any other period and its should not be comprised primarily of suffering and fear. We must work to change our health care system. To ask the question raised by this case: "Are speech-language services appropriate for a terminally ill patient?" should become inappropriate and denying services to those nearing the end of life should become unthinkable. Rather, we should ask: "Will this patient's remaining life be enhanced by speech-language services?"

Related Readings

  1. Groher, M.E. (1990). Ethical dilemmas in providing nutrition. Dysphagia. 5: 102-109.
  2. Segel, H.A. & Smith, M.L. (1995). To feed or not to feed. AJSLP. 4(1): 11-14.
  3. Sharp, H.M. & Genesen, L.B. (1996). Ethical decision-making in dysphagia management. AJSLP. 5(1): 15-22.
  4. Sharp, H.M. & Payne, S.K. (1998). Care at the end of life. In AM Guilford, PA Sullivan, A Hodges (eds). The Swallowing Management of Cancer Patients. San Diego: Singular. for more information see http://www.singpub.com

To submit cases or to be added to the list of respondents please contact: Helen Sharp Department of Speech Pathology and Audiology, 307 WJSHC University of Iowa, Iowa City, IA 52242. Phone: 319-335-6596, fax 319-335-8851, e-mail:  helen-sharp@uiowa.edu

Share This Page

Print This Page