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Many patients, especially the elderly and those with mental illness, have diminished or no capacity to participate in decision-making. Consider, for example, the patient who influenced by her paranoid schizophrenia refuses to allow her aortic stenosis to be managed by catheritization with valvuloplasty even though her prognosis is excellent if she does so and poor if she does not. Another example is the patient without any next of kin who has dementia, diabetes, and osteomyelitis with gangrene who needs an amputation of his foot and rehabilitation but who refuses. A last example is the medically fragile young adult with severe developmental delay who simply cannot understand the importance of dental extraction of a mesioangular impacted wisdom tooth. In these and similar cases, patients often can still express, sometimes very forcefully, their will – through words or deeds: the patient who wants to leave the hospital; the patient who makes threatening physical gestures when staff approach; or the patient pulls out a nasogastric tube or, worse, a PEG tube. Moreover, a surrogate may agree to an intervention or care plan justified by the patient’s “best interests” however that plan may be contrary to the patient’s “expressed” will. Is it fair to the patient to simply follow the surrogate or, in the absence of a surrogate, to simply move ahead based on a presumption that the patient must be protected from his or her lack of capacity? In other words, is the consent of a surrogate or the benefit of a clinical plan sufficient to ethically justify moving ahead regardless of the patient’s expressed will? This paper will address the ethical significance of the incapacitated will of a patient and offer a methodology for caregivers to use to address the ethical issues of these types of patients who need, but do not want, beneficial care. It will do so by exploring the ethical rationale for keeping the decision as close to the patient as possible and will offer a decision aid used in our ethics consultations to guide decisions and care planning for patients with diminished capacity.


Biomedical Ethics


Poster presented at 10th International Conference on Clinical Ethics Consultation: The Patient’s Voice, Paris France