Advance Directive as Ulysses Contract: The Application of Stopping of Eating and Drinking by Advance Directive.

Increased attention is being paid to "dementia directives," advance directives tailored to persons with dementia that outline what treatments an individual with dementia might wish to receive or forgo should they lose capacity. Particular focus has been placed on the request to have assisted oral feedings withheld, the so-called Stopping of Eating and Drinking by Advance Directive (SED by AD), the purpose of which is to hasten death. This article reviews the available literature regarding the practice of SED by AD and explores the clinical and ethical aspects as they present at the bedside. Our review aims to show that practical, clinically applicable ways to approach such requests must be developed in order to balance the fundamental principles at play.

Speech-Language Pathologists' Views About Aspiration Risk and Comfort Feeding in Advanced Dementia.

BACKGROUND: Speech-language pathologists (SLPs) are often called upon to assess swallowing function for older adults with advanced dementia at high risk of aspiration and make recommendations about whether the patient can safely continue oral nutrition. OBJECTIVE: To describe the circumstances under which SLPs recommend oral nutritional intake for these patients. METHODS: A mail survey of a national probability sample of SLPs (n = 731). Speech-language pathologists were asked if there were circumstances in which they would recommend oral feeding for patients with advanced dementia at high risk of aspiration, and if yes, to describe the circumstances under which they do so. RESULTS: Six themes emerged: (1) when patient preferences are known; (2) for quality of life near end of life; (3) if aspiration risk mitigation strategies are employed; (4) if physician's preference; (5) if aspiration risk is clearly documented and acknowledged; and (6) if SLP is knowledgeable about current evidence of lack of benefit of feeding tubes in advanced dementia or that nothing by mouth status will not necessarily prevent aspiration pneumonia. CONCLUSIONS: Speech-language pathologists have an important role within the interprofessional team in assessing swallowing in patients with advanced dementia, advising family and hospital staff about risks and benefits of oral feeding, and the safest techniques for doing so, to maximize quality of life for these patients near the end of life. Speech-language pathologists are often faced with balancing concerns about aspiration risk and recommending the more palliative approach of oral feeding for pleasure and comfort, potentially creating moral distress for the SLP.

Tube feeding in advanced dementia: an exploratory survey of physician knowledge.

The administration of artificial nutrition by means of a percutaneous endoscopic gastrostomy (PEG) tube in older persons in the advanced stages of dementia is commonplace, yet the treatment is associated with significant treatment burdens and unclear benefits in this population. In addition, there is wide and unexplained geographic variability in the use of PEG in advanced dementia, which may stem partly from physicians' lack of understanding about its indications, risks, benefits, and effect on quality of life in advanced dementia. This study was a mail survey undertaken to assess physician knowledge regarding tube feeding in advanced dementia and explore whether certification in geriatrics or other physician characteristics are associated with physician knowledge. To assess knowledge about tube feeding, we asked participants to rate the importance of commonly cited, but non-evidence based, indications for tube feeding in advanced dementia, including recurrent aspiration pneumonia, abnormal swallowing evaluations, abnormal nutritional parameters, preventing an uncomfortable death, and others. Discrepancies between physician knowledge and current evidence regarding tube feeding in advanced dementia were found, indicating a need for improved education ofprimary care physicians in order to ultimately provide better end-of-life care for patients with advanced dementia.

Refusing artificial nutrition and hydration: does statutory law send the wrong message?

Ethical consensus and appellate court decisions view artificial nutrition and hydration (ANH) as medical treatment that can be refused like other treatments. However, advance directive statutes may produce obstacles for refusal of ANH, as distinct from other life-sustaining treatments, in patients who lack capacity. This paper reviews state statutes and appellate case law regarding medical decision making for patients who lack decisional capacity. Twenty states (39%) have one or more explicit statutory provisions delineating a separate and more stringent standard for ANH refusal. These standards include higher evidentiary standard; requirement for specific preauthorization, qualifying medical conditions, second medical opinion, or judicial review; refusal not permitted; refusal not permitted if death would result from "starvation" or "dehydration"; and previous law with higher standard applies to old documents. In 11 of these states and in eight others, statutory law contains language that could be misinterpreted, implying, but not rising to, an explicitly higher standard. Four appellate decisions departed from the judicial consensus that ANH can be refused like other treatments, but subsequent court decisions or legislative enactments reduced or eliminated their impact. Legislators and the courts should ask whether higher standards for ANH refusal are appropriate in light of case law authority that ANH should not be treated differently and in light of statutory language that preserves those common law rights. These higher standards may make it more difficult in certain states to refuse ANH for patients who lack capacity or place a burden on good practice by making providers fearful of the law.

Tube feeding in patients with advanced dementia: knowledge and practice of speech-language pathologists.

CONTEXT: Speech-language pathologists (SLP) are often called on to evaluate eating difficulties in patients with dementia. OBJECTIVES: To assess factors associated with SLPs' knowledge and recommendations about feeding tubes in patients with advanced dementia. METHODS: A mail survey was administered to a probability sample of 1500 SLPs from the American Speech-Language-Hearing Association mailing list; 731 usable surveys were received (response rate=53.7%). Self-perceived preparedness, knowledge, and care recommendations were measured. Knowledge items were scored as "evidence based" or not according to the best evidence in the literature. RESULTS: Only 42.1% of SLP respondents felt moderately/well prepared to manage dysphagia. Only 22.0% of respondents recognized that tube feeding is unlikely to reduce risk of aspiration pneumonia whereas a slight majority understood that tube feeding would not likely prevent an uncomfortable death (50.2%), improve functional status (54.5%), or enhance quality of life (QOL) (63.2%). A majority (70.0%) was willing to consider recommending oral feeding despite high risk of aspiration. Logistic regression analyses indicated that those willing to consider this recommendation gave the most evidence-based responses to knowledge questions about tube feeding outcomes: aspiration pneumonia (odds ratio [OR]=1.75, 95% confidence interval [CI]=1.07-2.87), functional status (OR=1.43, 95% CI=1.0-2.06), QOL (OR=2.19, 95% CI=1.52-3.17), and prevent uncomfortable death (OR=1.97, 95% CI=1.37-2.88). Logistic regression analyses also indicated that those with more experience evaluating patients with dementia gave the most evidence-based response to two knowledge questions: aspiration pneumonia (OR=2.64, 95% CI=1.48-4.72) and prevent uncomfortable death (OR=2.03, 95% CI=1.35-3.05) whereas those with higher self-perceived preparedness in managing dysphagia in dementia had less knowledge in two areas: aspiration pneumonia (OR=0.57, 95% CI=0.38-0.84) and QOL (OR=0.72, 95% CI=0.51-1.01). CONCLUSION: Misperceptions among SLPs about tube feeding in advanced dementia are common, especially in relation to risk of aspiration. Knowledge about tube feeding outcomes was positively associated with experience and inversely associated with self-perceived higher preparedness in evaluating patients with dementia.