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When patients have severe dysphagia after a stroke, tube feeding may be recommended to reduce the risks associated with malnutrition, dehydration, and/or aspiration. Patients may not be able to participate in decision making, but they may have previously expressed strong preferences related to tube feeding. Clinicians must work together with the family to establish a treatment plan that is respectful of the person's previous wishes, yet mindful of the flaws in advance care planning. Although ethical issues cannot be avoided, clinicians can reduce uncertainty by understanding current ethical and legal views on these challenging issues. Key words: advance directives, artificially administered nutrition and hydration, deglutition disorders, tube feeding
Seldom is a medical team able to give an exact prediction for a person's long-term recovery immediately after a stroke. Although prognostic uncertainty is common across many clinical conditions, the sudden change in cognitive and communication skills associated with stroke presents some particular challenges for families and health care professionals. Difficult philosophical questions arise after an acute change in health status, for example, is the person after the stroke the "same person" with the same values and beliefs as they expressed previously. (1,2) It is exceptionally difficult to predict how a person will respond to newly acquired impairments or to determine whether or how that person will adjust to residual limitations months or years after the stroke. Even when individuals demonstrate a similar functional outcome, they may perceive the relative importance of these limits quite differently. For example, some patients who cannot eat orally after treatment for head and neck cancer rate eating by mouth as the most important thing to them, whereas others report that eating is not at all important. (3) Similarly, "objective" measures of severity do not necessarily correlate with patients' perceptions of severity. (4) Clinicians' estimates of physical or cognitive outcomes cannot begin to predict how the individual will perceive these abilities as recovery progresses. Previous studies demonstrate that clinicians consistently underestimate quality of life relative to the ratings obtained directly from affected individuals. (5-7)
In addition to prognostic uncertainty, families struggle with a sudden change in responsibility for decision making on behalf of a previously independent adult. Although it appears that decision making is easier when patients have expressed their preferences clearly, either verbally or in writing, the team and family must still interpret these preferences in light of a sudden change in the person's health state. Surrogate decision makers must consider whether the person's preferences from years ago should still apply and whether preferences to forgo specific medical technologies include the temporary use of these technologies to treat potentially reversible conditions.
Ethical Questions Related to Dysphagia
Swallowing impairment is a common after-effect of stroke. Although reported rates of dysphagia vary according to the diagnostic technique used, instrumental assessment reveals that between 64% and 78% of patients have problems with swallowing after stroke, (8,9) Dysphagia elevates the risk of developing complications such as pneumonia. (8,9) Dysphagia ranges from mild changes in coordination of swallowing function to an inability to sustain nutrition, hydration, or pulmonary health. When dysphagia is severe, recommendations to use alternative nutritional support are made to prevent complications such as malnutrition, dehydration, or aspiration pneumonia. (10) The use of alternative nutritional support is often temporary, and the majority of patients with dysphagia after stroke recover the ability to eat orally. (10)
Even temporary suspension of eating may lead patients and families to grieve the loss of eating, which is a source of pleasure and serves an important social role. Some patients consider food and water basic human needs that should never be withheld, while others hold strong preferences not to be "hooked to a machine to eat." When patients express a preference not to accept tube feeding, this decision sometimes poses a fundamental conflict with clinicians' goals to optimize the patient's recovery. If a patient elects to forgo any feeding or decides to continue to eat orally, despite a significant risk of complications, health care professionals are likely to express concern that the patient will get sick or weak or die. The clear link between dysphagia and the potential for serious complications or death can produce intensely emotional responses among team members and the patient's family.
Although the difficult questions associated with sudden changes in health status and the seriousness of determining whether to proceed with artificially administered nutrition and hydration cannot be avoided, clinicians can reduce uncertainty by understanding current ethical and legal views on these …