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\/>\n<meta property=\"og:locale\" content=\"en_US\"\/><br \/>\n<meta name=\"twitter:text:title\" content=\"Lisa Blumberg: Denying Access to Food and Water Based on Disability Status\"\/><br \/>\n<meta name=\"twitter:image\" content=\"https:\/\/notdeadyet.org\/wp-content\/uploads\/2024\/11\/cropped-NDY-Bumper-Sticker.pdf-1.png\"\/><br \/>\n<meta name=\"twitter:card\" content=\"summary\"\/><\/p>\n<p><br \/>\n\t\t\t \n\t\t\t<link rel=\"stylesheet\" href=\"http:\/\/notdeadyet.org\/wp-content\/plugins\/easy-columns\/css\/easy-columns.css\" type=\"text\/css\" media=\"screen, projection\"\/> <\/p>\n<link rel=\"stylesheet\" href=\"https:\/\/maxcdn.bootstrapcdn.com\/font-awesome\/4.6.1\/css\/font-awesome.min.css\"\/>\n<p><\/head><\/p>\n<p><body class=\"post-template-default single single-post postid-36199 single-format-standard wp-custom-logo wp-embed-responsive no-avatars has-site-logo\" id=\"wp_automatic_ReadabilityBody\"><\/p>\n<div id=\"page\" class=\"hfeed site\">\n<p><\/p>\n<div id=\"main\" class=\"site-main\">\n<div id=\"primary\" class=\"content-area\">\n<div id=\"content\" class=\"site-content\" role=\"main\">\n<article id=\"post-36199\" class=\"post-36199 post type-post status-publish format-standard hentry category-advance-directives category-better-dead-than-disabled category-brain-injury category-death-by-starvation-and-dehydration category-dementia category-lisa-blumberg category-blog-archive category-thaddeus-pope category-vsed tag-advance-care-planning tag-brain-injury tag-dementia tag-spoon-feeding tag-voluntary-stopping-eating-and-drinking\">\n\t<\/p>\n<div class=\"entry-content\">\n<div>\n<h3 class=\"paragraphindented\">It\u2019s Faustian \u2013 giving a nondisabled or slightly disabled person a chance to deny themselves access to food and water if they become significantly disabled and have resulting functional impairments.<a href=\"https:\/\/endoflifechoicesny.org\/directives\/dementia-directive\/\"> End of Life Choices New York<\/a>, a leading supporter of legalized assisted suicide, has developed an \u201cAdvance Directive for Receiving Oral Feeding and Fluids in Event of Dementia.\u201d<\/h3>\n<\/div>\n<div>\n<h3 class=\"paragraphindented\">The form is intended to take effect if \u201c1. I am unable to make informed decisions about my health care, and 2. I am unable to feed myself.\u201d There is some ambiguity about what inability to feed oneself means. Is it inability to use utensils neatly or is it inability to get any food into one\u2019s mouth independently? Also, since the document sweeps in liquids, it is unclear whether it applies if the person needs assistance eating but can drink with a straw.<\/h3>\n<h3 style=\"font-weight: 400;\"><strong>Be that as it may, the form permits the person to choose Option A or B. Option A states, \u201cIf I am suffering from advanced\u00a0 dementia and appear willing to accept food or fluid offered by assisted or hand feeding, my instructions are that I do NOT want to be fed by hand even if I appear to cooperate in being fed by opening my mouth.\u201d Option B allows for \u201ccomfort feeding\u201d if the person wants it but with no coaxing or cajoling permitted. Food can be withheld under this option if the person is \u201cindifferent.\u201d<\/strong><\/h3>\n<h3 style=\"font-weight: 400;\"><strong>The ethicist Thaddeus Pope believes that this type of form should be available to cover conditions other than dementia such as <a href=\"https:\/\/medicalfutility.blogspot.com\/2024\/03\/new-advance-directive-for-stopping-oral.html\">strokes and brain injury<\/a>. These just happen to be two conditions where people due to manual dexterity issues may need help with feeding at least temporarily. Pope is part of a group that has drafted an \u201c<a href=\"https:\/\/www.washingtonlawhelp.org\/resource\/vsed-directive\">Advance Directive for Voluntary Stopping Eating and Drinking\u201d<\/a>. Under this document, a person can indicate when it will be effective such as when \u201cI cannot communicate with others beyond a few words, eye movements, etc.\u201d A person in such a circumstance may be quite competent to make decisions of great complexity. Nonetheless if this box is checked, the form applies.<\/strong><\/h3>\n<h3 style=\"font-weight: 400;\"><strong>The core of the form is what happens \u201cif I express the desire to eat or drink.\u201d This depends on the option chosen but the person is out of luck either way.<\/strong><\/h3>\n<h3 style=\"font-weight: 400;\"><strong>The form provides that if: \u201cI repeatedly show by words or gestures that I want to eat or drink, I want my caregivers to reassess my palliative care and (initial one):<\/strong><\/h3>\n<h3 style=\"font-weight: 400; padding-left: 40px;\"><strong>\u00a0__ continue to withhold all help with eating and drinking.<\/strong><\/h3>\n<h3 style=\"font-weight: 400; padding-left: 40px;\"><strong>__ give me only enough food and drink for comfort even if it\u2019s not nutritionally adequate (also known as \u2018comfort feeding only\u2019). I understand this approach will likely prolong my dying process.\u201d<\/strong><\/h3>\n<h3 style=\"font-weight: 400;\"><strong>Thus, the form\u2019s title is a sham. It has nothing to do with voluntary stopping eating or drinking. It is about denying access to sustenance based on disability regardless of what the person may want at the time.<\/strong><\/h3>\n<h3 style=\"font-weight: 400;\"><strong>Pope isn\u2019t sure about the enforceability of the form but he appears to find merit in putting it out there anyway.<\/strong><\/h3>\n<h3 style=\"font-weight: 400;\"><strong>The ethicist <a href=\"https:\/\/thenevadaindependent.com\/article\/the-ethics-of-nevadas-new-law-on-dementia-and-advance-medical-directives\">Jacob Appe<\/a>l in trying to be dispassionate about the matter has stated, \u201cwhether to respect such instructions is a challenging ethical dilemma. It will likely be rendered even more fraught when legal cases begin to arise in which patients who signed such documents in the past and have since become significantly impaired vocally demand food and drink\u2014forcing loved ones and physicians to choose between following the advance directive\u2026or honoring the patient\u2019s current pleas.\u201d<\/strong><\/h3>\n<h3 style=\"font-weight: 400;\"><strong>It has been <a href=\"https:\/\/blog.petrieflom.law.harvard.edu\/2020\/03\/02\/the-ethics-of-dementia-advance-directives-for-receiving-oral-food-and-water\/\">argued<\/a> that a competent \u201ccurrent self\u201d should be able to make decisions to determine the fate of an incompetent \u201cfuture self\u201d and it denies autonomy to the \u201ccurrent self\u201d to limit him in doing so. What about the autonomy of the \u201cfuture self\u201d who may have different views? It is not a solution, as some have suggested, to respond to the food requests of a \u201cfuture self\u201d with so-called \u201ccomfort feeding\u201d. That is not respecting autonomy. It is deceiving a person into thinking he is being nourished when he isn\u2019t.<\/strong><\/h3>\n<h3 style=\"font-weight: 400;\"><strong>To my mind, the current-self\/future-self dichotomy is false. There is only one person even though that person may go through changes. For example, there are many instances where a person believes they would never want to continue living if they found themselves in a particular condition in the future, such as quadriplegia, but then see value in their life once they actually find themselves in such a condition. Appel calls this \u201cbargaining down\u201d as if the person is settling for a lesser existence. It is more properly known as the <a href=\"https:\/\/bioethics.umn.edu\/news\/moral-distress-and-disability-paradox#:~:text=The%20disability%20paradox%20reveals%20that,everything%20is%20in%20working%20order.\">disability paradox<\/a>.<\/strong><\/h3>\n<h3 style=\"font-weight: 400;\"><strong>The forms supported by Pope and others pervert the concept of advance directives. First, although some people reach a point where they can\u2019t make medical choices, virtually everyone capable of oral feeding can express whether they want to accept food or not. They can do it in the moment and make shifting decisions from one time to the next. The forms themselves recognize this. Unlike true advance directives, they contain explicit provisions overriding a person\u2019s expressed desires.<\/strong><\/h3>\n<h3 style=\"font-weight: 400;\"><strong>Proponents have <a href=\"https:\/\/blog.petrieflom.law.harvard.edu\/2020\/03\/02\/the-ethics-of-dementia-advance-directives-for-receiving-oral-food-and-water\/\">argued<\/a> that spoon or hand feeding is \u201cmedical treatment\u201d and therefore can be refused in advance. These arguments are spurious. Spoon or hand feeding is simply assistance with activities of daily living much like help in dressing or showering and indeed is less intimate. Countless thousands of individuals incorporate such help into their daily lives.<\/strong><\/h3>\n<h3 style=\"font-weight: 400;\"><strong>Moreover, if spoon feeding is designated as medical treatment, how long might it be before proponents move past advance directives allowing the current self to withhold oral food and liquids from a future disabled self to allowing surrogate decision makers to do the same thing \u2013 in the name of \u201ccompassion,\u201d of course? \u00a0<\/strong><\/h3>\n<\/div><\/div>\n<p><\/p>\n<footer class=\"entry-meta\">\n<\/footer>\n<p><br \/>\n<\/article>\n<p><\/p>\n<nav class=\"navigation post-navigation\">\n<p>\t\t<br \/>\n\t<\/nav>\n<p><\/p>\n<p><\/p><\/div>\n<p>\n\t<\/div>\n<p><\/p><\/div>\n<p><br \/>\n\t\t\n\t<\/div>\n<p><\/p>\n<p><\/body>\n<\/div>\n\n","protected":false},"excerpt":{"rendered":"<p>Lisa Blumberg: Denying Access to Food and Water Based on Disability Status | Not Dead Yet It\u2019s Faustian \u2013 giving a nondisabled or slightly disabled person a chance to deny themselves access to food and water if they become significantly disabled and have resulting functional impairments. End of Life Choices New York, a […]<\/p>\n","protected":false},"author":1,"featured_media":23515,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[12022],"tags":[1846,3528,30779,31105,17156,2074,5464,15924,638],"dealstore":[],"offerexpiration":[],"class_list":["post-64294","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-activist","tag-access","tag-based","tag-blumberg","tag-denying","tag-disability","tag-food","tag-lisa","tag-status","tag-water"],"yoast_head":"\n<title>Lisa Blumberg: Denying Access to Food and Water Based on Disability Status - Som2ny Network<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/fivemor.com\/?p=64294\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Lisa Blumberg: Denying Access to Food and Water Based on Disability Status - Som2ny Network\" \/>\n<meta property=\"og:description\" content=\"Lisa Blumberg: Denying Access to Food and Water Based on Disability Status | Not Dead Yet It\u2019s Faustian \u2013 giving a nondisabled or slightly disabled person a chance to deny themselves access to food and water if they become significantly disabled and have resulting functional impairments. 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