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NOW Is Time to Address Dementia The Human Right To A Death With Dignity Special Edition FEN responds in hour of crises VOL 19 • NO 2 SPRING 2020 NOW is time to address dementia Final Exit Network has created surrounding the explosion in a new Advance Directive designed Alzheimer’s and other forms of to prevent dying people from being dementia, because no state that offers force fed against their wishes – Medical Aid in Dying accommodates even if suffering from dementia. patients who are not “of sound mind” What’s more, FEN will go to court when it is time to receive assistance. in an effort to set a legal precedent Now there is a second, more ensuring that VSED (Voluntarily pressing crisis: COVID-19. The Stopping Eating and Drinking) is specter of a ventilator is now reality always available to those who sign for many of us who were already the Supplemental Advance Directive concerned about how we would die. for Dementia Care. FEN is stepping up in this time This document, and the drive to of dual crises, and this edition of the make it legally binding, has been magazine is keenly focused on on our agenda for some time. We what we all need to know. recognized the growing crisis – Brian Ruder, FEN President Life (and death) in the time of COVID-19 By Lowrey Brown words apply equally well when applied to laws FEN Client Services Director and social customs that would rob so many of The title is hardly original wordplay at the right to shape how their life stories end. this point in the pandemic, but it is a hat We at Final Exit Network are dedicated to tip to Gabriel García Márquez, who, in his our mission. Yet we recognize that there are 1982 Nobel acceptance speech, began his missions greater than our own, and stopping description of utopia with, “where no one will the spread of COVID-19 is one of them. be able to decide for others how they die.” We are committed to protecting the health He was speaking of oppression and the and welfare of our global community and violence that robs so many of the right to shape supporting efforts to stop this pandemic. their life stories, but I find it poignant that his COVID continued on page 2 Renew your membership online: www.finalexitnetwork.org COVID continued from page 1 We have been getting a lot of inquiries To that end, guides will not travel while there is a related to COVID-19 ... many people have risk to themselves or others. not, in any practical way, thought through That does not mean we are idle – quite the end-of-life scenarios or considered how they contrary. As many of our readers know, the vast might prepare for different eventualities. majority of people served by the Exit Guide Program never apply for guide support, let alone work with Fortunately, our coordinators are good at hearing a guide. The needs of these callers are met by our the question behind the words, and they created a coordinators, who are on the front lines answering simple, one-page tool (inset) to help people express questions, clarifying misconceptions, directing to their priorities for medical care should they fall resources, and discussing options. gravely ill from COVID or anything else during this They are still doing that, but with a coronaviral time of resource shortage and aggressive triage. twist. If there is a silver lining in this tragedy, it might We have been getting a lot of inquiries related lie in prompting people to talk with loved ones about to COVID-19, which have been eye-opening in their health-care priorities and wishes for end-of-life demonstrating how many care. Coordinators are people have not, in any My Choices If I Become Sick educating callers about practical way, thought in the COVID Pandemic advance directives through end-of-life Choose only one in each group of three. and health-care scenarios or considered representatives, about how they might prepare MEDICAL withdrawing medical care for different eventualities. LocationF ACILITY: I want to be transferred to a medical facility as soon as my symptoms are not easily managed at home. in a controlled manner, We have fielded ▢ IT DEPENDS: I want to stay at home unless my symptoms cannot be adequately managed at and about Voluntarily multiple calls from home, in which case I want to be transferred to a medical facility. ▢ Stopping Eating and worried individuals who HOME: I want to stay at home, if possible, even if my distress becomes considerable. Drinking (VSED) to want to know if we can ▢ hasten their death. help them if they get SymptomLOW: I want M minimalanagement sedation and want to be clear and conscious as long as possible. Indeed, this situation stuck on a ventilator with ▢ MEDIUM: I want adequate sedation but would like to be clear and conscious enough to has prompted us to COVID? communicate if possible. ▢ expand our toolkit so Pause, and think HIGH: I want maximum treatment of my symptoms, including pain, and understand this might hasten my death. we can better support about that question. ▢ individuals seeking the Even if it were legal If I become sick enough to need a life support machine… medical care they need to to provide the equip- Life Support Machines (Including Ventilat YES: I want to be on a life support machine if one is available. ors) embark on VSED. ment, which it isn’t, MAYBE: I would prefer to be on a life support machine, but do not want to be put on a life A planned self- and even if we were ▢ support machine if there are others who are more likely to survive who need it. deliverance is one path, but willing to flagrantly ▢ NO: I do not want to be put on a life support machine even if one is available. there are many others and expose our guides to ▢ – no matter how carefully a highly contagious Name (printed): one plans – life will dish virus, which we aren’t, Signature: up the unexpected, be it a how, exactly, do they Date: sudden stroke, an accident, think we would get April 2020 or a virus that lands you in into their room, deep in the hospital on life support. hospital quarantine, remove the ventilator, rouse them Do your loved ones know what you want? into consciousness from the sedation necessary for a ventilator, and guide them through an exit? Editor’s note: The full-size document pictured above On the surface, the question might sound is available online by clicking here, or by phoning Final logistically absurd, but it isn’t absurd if you have never Exit Network at 866-654-9156. considered the paths by which your life might end, or what you might be able to control in those scenarios. 2 Final Exit Network Spring 2020 Dementia is not sheltered-in-place By Janis Landis, FEN Board Member considered incompetent for any other legal purpose, s we age, we face limitations (Why did I just you are considered competent to overrule your walk into this room?), and for the most part, Advance Directive simply by opening your mouth. we learn to live with them. We know that Caretakers cannot be prevented by your health-care Ahealth issues are likely to multiply, and we will make surrogate from enticing you to do so. decisions based on our personal beliefs: Fight to the To baby boomers used to great autonomy, this last drop of strength – or decide to end the fight on our issue is a significant matter of increasing concern. terms. Many organizations are trying to address it by But dementia robs us of the ability to recognize suggesting specific additional instructions for ADs. our situation and the ability to carry out our end-of-life However, by itself it is unlikely that a person’s decisions. For most of us, this makes dementia one amended directive is going to make any difference. of the most feared – perhaps the single most feared – medical diagnoses. ... we will provide legal counsel to assist To understand why dementia is so different in your health-care surrogate in demanding terms of personal choice requires a bit of explanation. that your care provider honor the dementia In all 50 states, it is settled law that competent supplement to your AD. adults have the right to refuse medical treatment. And crucially, since artificial hydration and nutrition Final Exit Network is the only right-to-die organization that has developed a plan of action Dementia robs us of the ability to designed to challenge these laws. recognize our situation and the ability to In the right circumstances, we will provide carry out our end-of-life decisions. legal counsel to assist your health-care surrogate in demanding that your care provider honor the dementia (feeding tubes, etc.) are defined as medical treatment, supplement to your AD – our new document called you can include such prohibitions in your Advance the Supplemental Advance Directive for Dementia Directive (AD). It will be honored even if you are no Care (SADD). longer competent due to physical conditions. More importantly, we are prepared to litigate on For example, if you have excluded artificial feeding your behalf to enforce compliance with your SADD – and lapse into a coma, your directive will be honored. at no cost to you or your estate. But a very important complication arises if you are There is much more to be said about how deemed no longer competent due to dementia. All your individual cases will be selected and how this process medical directives will be honored.
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