Response by Denise Ambrosi

Ethics Roundtable: Rehabilitation and End-of-Life Care

Denise Ambrosi, MS CCC-SLP
Clinical Supervisor, Speech Pathology Department 
Spaulding Rehabilitation Hospital 

Mrs. J's case raises important questions regarding the role of the speech-language pathologist in the management of dysphagia in the terminally ill patient. First, would the speech-language pathologist approach this patient like any other patient? Certainly Mrs. J is entitled to a clinical swallowing assessment and a modified barium swallow study (which would likely be indicated based on diagnosis). Despite Mrs. J's wish to avoid use of feeding tubes to prolong her life, the speech-language pathologist could play an important role in her care. A videofluoroscopic study would serve to identify: the nature of her dysphagia, presence of aspiration and its cause, her ability to protect her airway (ie. cough response and its effectiveness), "safest" diet textures, and any compensatory and therapeutic maneuvers that may provide her with the most efficient swallow possible. After this information is gathered, patient/family education would be the most critical intervention that the speech-language pathologist could offer. Once educated regarding her current swallowing skills and the risks that accompany oral feeding, Mrs. J could make informed decisions after weighing all of her options. This is based on the assumption that she has decision-making capacity (DMC).

Second, does Mrs. J fully understand her dysphagia status, and is she willing to take the risks which have been identified (critical components of DMC)? It is not for the clinician to decide if she/he would take the risks faced by Mrs. J. Respect for Mrs. J's decisions is an ethical responsibility for the speech-language pathologist once she/he is confident that Mrs. J understands her situation. If the speech-language pathologist feels morally unable to work with this patient, then it is her/his responsibility to identify another speech-language pathologist who can work with her.

Third, what is the nature of the dysphagia "treatment" with Mrs. Johnson? It may be felt by some that being labeled "terminally ill" precludes receiving traditional rehabilitation treatment. The speech-language pathologist needs to consider that the goal of treatment may be short-term, and a change in the physiology of her swallowing may not be the anticipated outcome. Rather, therapy would encompass patient/family education and implementation of compensations for dysphagia with the "safest" diet. This approach may serve to minimize the physical and emotional pain and discomfort associated with dysphagia and aspiration.

Most speech-language pathologists have no formal training in the area of palliative care, and yet are expected to counsel terminally ill patients with regard to dysphagia and end of life decisions about eating. Each of us needs to examine our level of comfort and competence in treating the terminally ill patient. The treatment may be time limited yet critical to the dying patient. In a recent lecture, Rabbi Harold Kushner, expert in death and dying, stated "there are two things that terminally ill people fear more than the prospect of death - pain and abandonment." Swallowing treatment may palliate the symptoms of dysphagia, and through this intervention the speech-language pathologist may create a supportive presence to alleviate feelings of abandonment during the dying process.

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

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: [email protected]

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