What if a Patient Refuses Treatment?

Do clinicians have the right to insist when a patient refuses treatment? Do patients have the right to endanger themselves? The Council on Professional Ethics (COPE) hopes to foster lively discussions on these and other challenges facing our professions. Below is a case study submitted by Alvin H. Moss, MD, followed by several responses that illustrate that there are many ethically justifiable approaches to such cases and often no "right" answers. 

Mr. Brown is an 82-year-old man hospitalized with a closed head injury after a fall. A stroke several years ago mildly affected his speech and swallowing functions, both of which returned to functional levels.

A speech-language pathologist evaluates Mr.Brown because of complaints of swallowing difficulty. She completes a clinical assessment of his swallowing and a videofluoroscopic study because of signs and symptoms of aspiration. The study shows that Mr. Brown aspirates a small amount on all liquid and food consistencies. He is at risk for complications because of decreased mobility. The treatment team recommends he discontinue oral feeding and that a permanent gastrostomy feeding tube be placed. Mr. Brown refuses a feeding tube.

An ethics consultation is requested and the ethics team determines that Mr. Brown has the capacity to make the decision to refuse a feeding tube. He and his daughter confirm his consistent wish not to have a feeding tube. He appears to understand his condition and the risks of poor nutrition and aspiration. The ethics consultants recommend that Mr. Brown's wishes be respected and that the speech-language pathologist assist in designing an oral feeding program.

Lynne Brady

The "bottom line" is whether the patient has decision-making capacity (DMC). Does Mr. Brown understand the infor-mation regarding his condition? Does he comprehend the consequences of treatment versus non-treatment? Finally, can he weigh all the options and communicate a decision? If Mr. Brown possesses these abilities, he has the right to refuse treatment. Respect for patient autonomy is the primary ethical principle to employ when a patient is able to make deci-sions for him/herself.

It may appear to clinicians that the burdens of foregoing tube feeding outweigh the benefits. This is especially true in an individual for whom we anticipate dysphagia to be amenable to treatment. However, we lack data about the true risks of 'a small amount' of aspiration, so in some cases it can be difficult to justify the preference for tube feedings.

A time-limited trial of oral feeding or tube feeding may be a viable option. This involves a treatment plan that includes specific criteria for revisiting the decision. For example, Mr. Brown could eat orally and agree to reconsider a tube if he develops complications.

Brady, a Disability Fellow, is with the Rehabilitation Institute of Chicago, and the Center for Clinical Medical Ethics, University of Chicago.

Jeri Logemann

First, the fact that the ethicists defined Mr. Brown as having the capacity to make decisions for himself indicates that he is probably capable of following directions and using strategies to improve his swallow. There is no indication that treatment strategies were attempted during the radiographic study. This is critical to the highest quality care for patients with dysphagia. Second, the placement of the gastrostomy tube was described as "permanent." No non-oral feeding is permanent. In a patient like Mr. Brown, with good recovery potential, the speech-language pathologist should counsel him that the strategies are probably temporary.

If dysphagia treatment had any impact in eliminating aspiration, Mr. Brown might be able to supplement the tube feeding with some food or liquid by mouth. This combination approach may be more acceptable to him. If treatment procedures do not eliminate aspiration, then the speech-language pathologist must decide whether or not to assist the patient in oral feeding. The concern of course is to reduce the speech-language pathologist's liability should the patient get pneumonia and/or die because of eating orally. Despite the family's agreement with the patient's wishes, they may still sue the clinician for recommending feeding if it leads to the patient's demise. The radiographic study may show that the patient aspirates only 20% using a specific treatment procedure, versus 80% without the procedure. Thus, the speech-language pathologist could assist the patient's caregivers indirectly by providing optimal feeding strategies, while still maintaining the initial recommendation regarding non-oral feeding.

Logemann is Ralph and Jean Sunden Professor, Department of Communication Sciences and Disorders, Northwestern University, Evanston.

Alvin Moss

This case highlights that speech-language pathologists, like other healthcare professionals, must learn patients' values and preferences before making recommendations. The speech-language pathologist's wish to prevent aspiration and prolong life conflicts with the patient's wishes for comfort and avoiding life prolongation using tube feeding. Many speech-language pathologists are uncomfortable feeding a patient who aspirates, and may worry about legal liability.

The overriding ethical principle in this case is respect for patient autonomy. Ethically and legally patients have the right to refuse life-sustaining treatment, including artificial nutrition and hydration. The Patient Self-Determination Act (1991) is a federal statute that reinforces patients' rights to refuse artificial hydration and nutrition. This right was determined in constitutional law in the case of Nancy Cruzan. Thus, the recommendations of the ethics consultants were solidly based on both ethics and law.

Once a decision has been made to respect patient preferences, the goal of intervention changes from traditional dysphagia management to focusing on patient comfort, quality of life, and to decreasing aspiration as much as possible.
For some speech-language pathologists, participating in a treatment plan that allows a patient to eat despite the possibility of aspiration may violate their personal moral convictions. If so, they may choose to withdraw from the patient's treatment, but should identify a colleague to provide care.

Moss is Director, Center for Health Ethics and Law, Robert C. Byrd Health Sciences Center, West Virginia University, Morgantown.