American Speech-Language-Hearing Association

Ethics Roundtable: Rehabilitation and End-of-Life Care

Response by Michael Groher

Michael Groher, Ph.D.
Clinical Professor and Speech Pathology
Section Chief Department of Communicative Disorders,
Health Science Center University of Florida
Gainesville, FL

Mrs. J. undoubtedly has undergone numerous hospitalizations for the treatment of her disease that included both radiation and chemotherapy. Both treatments have not been successful in controlling her disease that now has metastasized. She may be depressed by her prognosis and angry about the failure of the medical team to provide a cure. Additional tests or "treatments" often are rejected by terminal patients who perceive them as futile because of past failures. Clinicians need to be sensitive to this when asking for additional tests, planning care, or offering comfort measures.

The medical team has determined that Mrs. J. and her family possess the decision-making capacity to refuse enteral feeding, even if she may require it because of her dysphagia. Once this is known, the role of the speech pathologist should be to establish the mode of ingestion that will provide the patient with the most pleasurable eating experience.

The history suggests that the patient recently has been hospitalized for pneumonia, but that prior to her intravenous support, she had been eating. The issue of whether the patient had pneumonia secondary to aspiration requires clarification. In patients with metastatic disease to the lungs, radiographic conclusions about aspiration pneumonia may be difficult. Further corroboration of her failure to ingest successfully prior to her pneumonia should be sought from the patient and family either by the speech pathologist, or prior to involving the speech-language pathologist in an evaluation of swallowing competence.

Assuming that the pneumonia was related to events of upper airway aspiration, the opinion of the speech pathologist should be sought. The case manager for the insurance company suggests that the speech-language pathologist should not be involved because the patient is no longer a rehabilitation candidate due to her terminal illness status.

While the traditional role of the speech-language pathologist is one of rehabilitation specialist, there are many instances when the speech pathologist in a medical setting provides special advice to patients or families that is directed toward compensation or adjustment to a communication or swallow impairment, rather than trying to rehabilitate it. While the speech pathologist is usually not a major player on the hospice team, in this case he/she should be involved by helping the patient ingest at a level that provides comfort while eating at a dietary level that maximizes eating pleasure. This can be accomplished by a thorough dietary history (likes and dislikes), and by clinical evaluation of those food items most pleasurable to the patient. In conjunction with the dietitian, the speech pathologist should estimate the patient's success in oral caloric intake and discuss the possibility with the patient of either increasing the number of meals, or of enteral supplementation. If patients are given the option of oral feeding in addition to enteral support, their acceptance of the latter is more easily achieved.

If the case manager has determined that Mrs. J. is adamant about eating whatever she wants, and is not concerned about eating comfort or any health risks from oral ingestion, then further consultation by any specialist addressing her intake status is not warranted.

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

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