Supplemental Advance Directive for Dementia Care (SADD)
NOW Is The Time To Address Dementia
Final Exit Network (FEN) has created a new advance directive (AD) designed to prevent dying people from being kept alive against their wishes, long after dementia has eradicated their former selves.
What’s more, if necessary, FEN will go to court in an effort to set a legal precedent ensuring that Voluntarily Stopping Eating and Drinking (VSED) is always available to those who sign the Supplemental Advance Directive for Dementia Care (SADD) or a similar AD.
This SADD document, and the drive to ensure that it is legally binding, has been on our agenda for some time. We recognized the growing crisis surrounding the explosion in Alzheimer’s and other forms of dementia, because no state that offers Medical Aid in Dying (MAiD) accommodates patients who lack mental capacity when it is time to receive assistance.
By 2030, less than nine years from now, nearly 10 million elderly baby boomers are expected to have dementia. Some researchers are warning of a Generation Alzheimer's, or a Dementia Tsunami.
We hope you will join us in trying to expand the right of competent people to decide on their own plan for dementia care.
Dementia Is Not Sheltered-In-Place
As we age, we face limitations (why did I just walk into this room?) and for the most part, we learn to live with them. We know that health issues are likely to multiply, and we will make decisions based on our personal beliefs – fight to the last drop of strength, or decide to end the fight on our terms.
But dementia robs us of the ability to recognize our situation and the ability to carry out our end-of-life decisions. For most of us, this makes dementia one of the most feared – perhaps the single most feared – medical diagnosis.
To understand why dementia is so different in terms of personal choice requires a bit of explanation. In all 50 states, it is settled law that competent adults have the right to refuse medical treatment. And crucially, since artificial methods of hydration and nutrition (such as feeding tubes and IVs) are defined as medical treatment, you can include such prohibitions in your AD. It will be honored at the prescribed time in the future, even if you are no longer competent due to physical conditions.
For example, if you have excluded artificial feeding and lapse into a persistent vegetative state, your directive will be honored.
But a very important complication arises if you lack mental capacity due to dementia. While your ADs regarding medical procedures will be honored, your AD that you not be hand-fed and hydrated might not. In the view of many healthcare providers, it is not considered “medical treatment” for them to offer food and liquids orally, and not through artificial means. Your caretakers may offer you plates of food, and often try to tempt you, even if you are initially uninterested in eating. In this manner, dementia patients are often kept alive for years.
To their healthcare personnel, hand feeding is classified as ordinary care and comfort, like bathing and tending to other bodily needs.
When you are no longer competent, you may react instinctively to the tempting plate of food and open your mouth. This reflex action is viewed by many legal authorities as overriding your AD instruction to not be fed.
In other words, although you would now be considered incompetent for any other legal purpose, you are considered competent to overrule your AD simply by opening your mouth. Caretakers cannot be prevented by your healthcare surrogate from enticing you to do so.
To baby boomers used to great autonomy, this issue is a significant matter of increasing concern. Many organizations are trying to address it by suggesting specific additional instructions for ADs. However, by itself it is unlikely that a person’s amended directive is going to make any difference.
FEN is the only right-to-die organization that has developed a plan of action designed to challenge these laws.
In the right circumstances, we will provide legal counsel to assist your healthcare surrogate in demanding that your care provider honor the dementia supplement to your AD – our new document called the Supplemental Advance Directive for Dementia Care.
More importantly, we are prepared to litigate on your behalf to enforce compliance with your SADD – at no cost to you or your estate.
FEN provides exit guide services to people who choose self-deliverance over a descent into dementia, when they would be no longer competent to choose their exit. Sadly, those people often fear they have “left time on the table” by having to act prematurely.
FEN's SADD initiative is a bold step to make it unnecessary for anyone to sacrifice extra time they could have spent with loved ones.
FEN’s Dementia Plan Of Action
FEN is launching a program to litigate for enforcement of an AD prohibition on hand feeding. The goal is to allow the individual with dementia to end their life through VSED.
Some experts think the term “VSED” is incorrect in this context because it is not “voluntary.” They would have us use the tortured term “SED by AD,” for “Stopping Eating and Drinking by Advance Directive.” We think they have missed the point. We think every medical protocol ordered by a patient in an AD is “voluntary.”
With appropriate palliative care, including pain medication, VSED can be a peaceful and dignified way to avoid the ravages of advanced dementia.
The Supplemental Advance Directive For Dementia Care
A blank copy of the SADD is available in PDF format via the link at the bottom of this page. The SADD document may be downloaded to your computer, then printed. The PDF document on your computer remains available to reprint at any time.
Before signing the SADD, the user must separately have a general purpose AD in place, along with an appointment of a healthcare surrogate (also known as a proxy or an agent appointed under a durable power of attorney for health care). The AD, appointment of a surrogate (which is often within the AD), and SADD should be kept together and given to your healthcare providers for placement in your permanent medical records.
The Current Legal Landscape
There is little legal guidance in state law on whether a healthcare provider is legally required to discontinue manual feeding and hydration based on instructions that patients included in their ADs. In one of the few known cases, when a surrogate sought to initiate VSED for a severely demented patient, the judge refused to honor the surrogate’s authority because the patient had not specifically included a VSED instruction in her AD, but had only generally prohibited the provision of measures intended to prolong life (such as the administration of antibiotics).
The ruling left open that the judge might have supported her choice of VSED if the AD had been more clear by explicitly ordering VSED. In FEN’s SADD, we seek to leave no ambiguity about the patient’s choice.
The SADD Program
Any individual who wishes to use the SADD on their own can do so. In addition, any user may sign up to receive free legal assistance from FEN in procuring the enforcement of the document from hesitant healthcare providers and institutions.
FEN will provide access to its general counsel, Robert Rivas, to consult with users of the SADD and potentially to sign them up as participants in FEN's ongoing litigation initiative. To inquire into this program, contact Mr. Rivas at firstname.lastname@example.org and he will arrange to confer with you by phone.
Volunteer participants will be asked to provide some basic information such as age, state of residence, contact information, and current health, and to discuss their choice of healthcare surrogate.
Objectives Of The Program
FEN’s plan is to seek out opportunities to shape the law of the future by establishing precedents today. Most healthcare institutions treat hand feeding as a minimum standard of care that cannot be withdrawn.
Our goal is to make them treat it as a medical procedure – one that a patient has every right to refuse.
A patient would thus be empowered to choose VSED, which – when carried out with good palliative care, including adequate pain medication – can be a peaceful and dignified way to avoid the pitiful and pointless final stages of dementia.
FEN’s SADD is available for you to use even if you do not wish to be a “test case” and participate in the litigation initiative.
Please remember that this directive is not for everybody. It’s only for savvy users of ADs – those who have given plenty of thought to this issue and have made up their minds regarding choosing self-deliverance by VSED, over being spoon-fed interminably after they cannot or would not otherwise eat.
You must also have a healthcare surrogate who is completely comfortable with this request and who is prepared to push past opposition from healthcare providers.
You and your surrogate must also understand that your VSED request may not be honored. However, the inclusion of this provision in your SADD does help improve the chances of it being upheld, and generally contributes to a climate in which such requests become the norm.