This page describes more than ten specialized VSED dementia directives designed and disseminated by various organizations.
VSED directives are important because MAID is generally not an available exit option for dementia. For example, while permitted (and recently re-approved) in the Netherlands, it is rarely used. In contrast, VSED may (at least for now) be a good exit option for dementia. Consequently, some academics and advocates have been working on analysis and tools to permit VSED by advance directive.
Northwest Justice Project & National VSED Advance Directive Committee
I worked with these groups to develop this VSED Directive. It expresses your end-of-life wishes if dementia or other progressive illnesses cause you to lose the ability to make your own health care decisions. This VSED Directive can be used anywhere in the United States. While you can print and complete on paper, it is most effective to follow the menu-guided questions and print a form that reflects your answers.
Nevada has the only U.S. health care decisions law that specifically addresses dementia and the refusal of hand feeding (food and water). The statute sets forth a model advance directive form. Here is both the statute and an article where I explain its significance for those in Nevada and beyond. While Nevada may be the most explicit, other state advance directives laws (like Vermont) come very close to specifically permitting a VSED directive.
One of the most carefully vetted and resourced VSED directives is the Dartmouth Dementia Directive. Not only is the form more sophisticated than most others, it is also supported by a broad range of guidance.
My Way Cards were one of the earliest tools developed and distributed for dementia advance care planning. Caring Advocates provides not just a form like many other organizations. It provides a tool to reflect upon, articulate, and record one's preferences about living with late stage dementia.
End of Life Choices New York
One of the earliest VSED advance directives is from End of Life Choices New York: the "Advanced Directive for Receiving Oral Foods and Fluids in Dementia." In collaboration with attorneys, palliative care clinicians and others, EOLCNY developed an advance directive specifically designed for those with an early stage of Alzheimer's or another dementing disease, or for those with a significant family history of dementia and fears of developing such a disease in the near future. NPR and Kaiser Health News nicely covered the new advance directive.
Like EOLCNY, End of Life Washington has developed a suite of forms and planning tools. EOLWA notes that its advance planning document allows people coping with Alzheimer’s disease and dementia to document their wishes about the inevitable challenges related to living with these illnesses. They further note thst even if this directive is not legal where you live, you can still use it to document your wishes and provide a guide for your family, health care providers, long-term care providers, and others.
Compassion & Choices is one of the largest and most active end-of-life advocacy organizations. They have developed a Dementia Values & Priorities Tool that helps you identify your personal values and care wishes so that you stay in control. here, you can add a dementia provision to your advance directive to advise physicians and family of your specific wishes about artificial nutrition and hydration, including spoon-feeding. C&C arns that not all memory care or long-term care facilities will honor such a directive, so you’ll want to explore the issue before you are admitted. To lessen the chance your preferences will be challenged, you may also consider videotaping a statement explaining why you have completed a dementia directive, and making clear that you have made your decision without pressure or coercion.
The Final Exit Network developed the Supplemental Advance Directive for Dementia Care (SADD). Like the other organizations listed on this page, FEN offers its VSED directive for anyone to use. But FEN also invites users to sign up to receive free legal assistance from FEN in procuring the enforcement of the document from hesitant healthcare providers and institutions.
Unlike the other organizations listed here, the Swiss group EXIT only provides it directive to members. But membership does entitled the member to (1) free advice over the phone or in person when filling out the EXIT living will, (2) secure electronic filing at the office, and 93) advice and, if necessary, a second medical opinion or legal support for persons close to you if it is difficult to enforce the living will.
Like EXIT, the Swiss group LifeCircle offers not only the form itself but also supportive services. First , in case of non-observance of the Living will, Lifecircle will talk to physicians, nursing staff and relatives in order to realize the wishes of the member according to his or her Living will. Second, through a login code, the Living will of a member of lifecircle can be accessed by physicians also on the Internet. Login and password are on the members card.
Bill Simmons developed a suite of end-of-life planning resources at Final Exodus. These include a 3-page advance directive with 5 pages of instructions.
Last year, a physician, a nurse, am ethicist, and I published Voluntarily Stopping Eating and Drinking: A Compassionate, Widely-Available Option for Hastening Death with Oxford University Press. Half the book covers clinical, ethical, and legal issues pertaining to VSED. The other half covers clinical, ethical, and legal issues pertaining to VSED by advance directive. Plus, we have two special appendices. Appendix A offers "Recommended Elements of an Advance Directive for Stopping Eating and Drinking." Appendix B offers a "Sample Advance Directives for SED."
JAMA
While most dementia and VSED directives have been developed over just the past five years, some have appeard in the medical literature more than 25 years ago. This VSED directive was printed in the prestigious Journal of the American Medical Association in 1996.
A growing number of elder law and estate planning law firms are offering to help individuals complete dementia directives. These firms typically develop their own language that they determine is most effective in their jurisdiction or most appropriate to the client's objectives.
