When Voluntary Stopping of Eating and Drinking in Advanced Dementia Is No Longer Voluntary.

In "On Avoiding Deep Dementia," Norman Cantor astutely notes that, for some individuals, the concept of "protracted maintenance during progressive cognitive dysfunction and helplessness is an intolerably degrading prospect." This cannot be argued with. Cantor's solution, however-that in the wake of a dementia diagnosis, patients should have the option to direct, in advance, instructions for voluntary stopping of eating and drinking should they develop a state of deep dementia-is more ethically challenging than it may first appear. Respect for autonomy is one of the most fundamental principles of bioethics, and it requires that we allow patients with capacity to refuse life-sustaining treatment, even when that treatment is something as seemingly innocuous as nutrition and hydration. If a capacitated person uses an advance directive to prospectively refuse artificial nutrition or hydration, then that treatment must be withheld if the person develops dementia and loses the ability or willingness to eat. Cantor is incorrect, however, in suggesting that an advance directive can require that nutrition and hydration be withheld from a patient with dementia who actively requests to eat or drink. Regardless of the language in an advance directive, caregivers cannot be compelled to abandon their duty to attend to the person's human dignity, nor can physicians be compelled to sedate a person with moderate or severe dementia because that person continues to be receptive to eating and drinking.

A Patient (Not) Alone.

This case analysis examines questions that arise when an ethically appropriate recommendation initially appears to be in conflict with the legally appropriate recommendation. The case involves a dying, incapacitated octogenarian who had friends who were willing to share her values, but not to make decisions on her behalf. These circumstances put the patient in the unique position of being legally considered a "patient alone," but who was ethically like a patient with surrogates-distinctions that are crucial when making end-of-life decisions under the New York Family Health Care Decisions Act. A strict interpretation of the law initially seemed to be in conflict with an ethically appropriate outcome. By gaining a deeper understanding of the patient from those who cared about her, however, and by considering a broader interpretation of the law, an outcome was reached that worked within the framework of the law and honored the patient's reported values.

Developing and testing a checklist to enhance quality in clinical ethics consultation.

Checklists have been used to improve quality in many industries, including healthcare. The use of checklists, however, has not been extensively evaluated in clinical ethics consultation. This article seeks to fill this gap by exploring the efficacy of using a checklist in ethics consultation, as tested by an empirical investigation of the use of the checklist at a large academic medical system (Cleveland Clinic). The specific aims of this project are as follows: (1) to improve the quality of ethics consultations by providing reminders to ethics consultants about process steps that are important for most patient-centered ethics consultations, (2) to create consistency in the ethics consultation process across the medical system, and (3) to establish an effective educational tool for trainers and trainees in clinical ethics consultation. The checklist was developed after a thorough literature review and an iterative process of revising and testing by a group of experienced ethics consultants. To pilot test the checklist, it was distributed to 46 ethics consultants. After a six-month pilot period in which ethics professionals used the checklist during their clinical activities, a survey was distributed to all of those who used the checklist. The 10-item survey examined consultants' perceptions regarding the three aims listed above. Of the 25 survey respondents, 11 self-reported as experts in ethics consultation, nine perceived themselves to have mid-level expertise, and five self-reported as novices. The majority (68 percent) of all respondents, regardless of expertise, believed that the checklist could be a "helpful" or "very helpful" tool in the consultation process generally. Novices were more likely than experts to believe that the checklist would be useful in conducting consultations. The limitations of this study include: reduced generalizability given that this project was conducted at one medical system, utilized a small sample size, and used self-reported quality outcome measures. Despite these limitations, to the authors' knowledge this is the first investigation of the use of a checklist systematically to improve quality in ethics consultation. Importantly, our findings shed light on ways this checklist can be used to improve ethics consultation, including its use as an educational tool. The authors hope to test the checklist with consultants in other healthcare systems to explore its usefulness in different healthcare environments.