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

Essentials 6: Ethical and Legal Practice

This book presents medical ethical principles and their application to clinical situations. Topics include the decision-making process when making ethical decisions, instructive and proxy directives, informed consent and research in hospice and palliative care, and providing guidance around misconceptions about opioids, cardiopulmonary resuscitation, withdrawal of artificial ventilation or nutrition and hydration, and suicide or euthanasia

Speech-Language Pathologists\u27 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\u27s 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

State Practice Variations in the Use of Tube Feeding for Nursing Home Residents with Severe Cognitive Impairment

To describe the differences in prevalence of tube feeding among states and to examine possible factors that could explain practice patterns. DESIGN: Analysis of random samples from an interstate data bank comprised of the Minimum Data Set (MDS), a standardized, federally mandated assessment instrument for nursing home residents. SETTING: Nursing homes in four states participating in a federal demonstration project of case mix payment plus five others with existing MDS data systems. PARTICIPANTS: Individuals 65 years of age and older (N = 57,029), who had very severe cognitive impairment, including total dependence in eating, and who resided in nursing homes during 1994, the most recent year for which uniform data were available. MEASUREMENTS: State-by-state differences in prevalence of tube feeding, controlling for demographic and clinical variables. RESULTS: The prevalence of tube feeding ranged from 7.5% in Maine to 40.1% in Mississippi. Each state had a significantly elevated prevalence of tube feeding compared with Maine, with odds ratios (ORs) ranging from 1.50 to 5.83, P < .001. Specific directives not to provide tube feeding (OR 0.41, P < .001), and white race (OR 0.45, P < .001) were strongly and negatively associated with tube feeding. CONCLUSIONS: Wide regional variations exist in the use of tube feeding of nursing home residents with equivalent impairments. Sociodemographic factors could be important, but more study is needed to determine whether physician characteristics, such as race, attitudes, or knowledge, have an impact and to clarify medical standards for the use of tube feeding in this population.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/65463/1/j.1532-5415.2001.49035.x.pd

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

Pain perception in disorders of consciousness: Neuroscience, clinical care, and ethics in dialogue

peer reviewedPain, suffering and positive emotions in patients in vegetative state/unresponsive wakefulness syndrome (VS/UWS) and minimally conscious states (MCS) pose clinical and ethical challenges. Clinically, we evaluate behavioural responses after painful stimulation and also emotionally-contingent behaviours (e.g., smiling). Using stimuli with emotional valence, neuroimaging and electrophysiology technologies can detect subclinical remnants of preserved capacities for pain which might influence decisions about treatment limitation. To date, no data exist as to how healthcare providers think about end-of-life options (e.g., withdrawal of artificial nutrition and hydration) in the presence or absence of pain in non-communicative patients. Here, we aimed to better clarify this issue by re-analyzing previously published data on pain perception (Prog Brain Res 2009 177, 329–38) and end-of-life decisions (J Neurol 2010 258, 1058–65) in patients with disorders of consciousness. In a sample of 2259 European healthcare professionals we found that, for VS/UWS more respondents agreed with treatment withdrawal when they considered that VS/UWS patients did not feel pain (77%) as compared to those who thought VS/UWS did feel pain (59%). This interaction was influenced by religiosity and professional background. For MCS, end-of-life attitudes were not influenced by opinions on pain perception. Within a contemporary ethical context we discuss (1) the evolving scientific understandings of pain perception and their relationship to existing clinical and ethical guidelines; (2) the discrepancies of attitudes within (and between) healthcare providers and their consequences for treatment approaches, and (3) the implicit but complex relationship between pain perception and attitudes toward life-sustaining treatments