Comparing dementia advance directives–Part 3

Part 1 of this series discussed the overall characteristics of eight Dementia Directives, identified by authorship.  Part 2 discussed approaches to drafting such a directive to help readers think about the elements of each.  This post, Part 3, discusses the supplemental advance directive for dementia offered by Final Exit Network (FEN) for those people who do not want to live into the later stages of dementia.

The dementia directive was drafted by FEN’s legal counsel, Robert Rivas, who sought opinions from others before putting it in final form.  While lawyers regularly disagree about the details of such directives, FEN’s dementia directive includes virtually all of the most important provisions that are missing from the dementia directives previously discussed.

Explanation of FEN’s dementia directive

FEN’s dementia directive begins with listing the health, physical, and mental conditions that will be used to determine when the directive is triggered–what the directive terms “My Chosen End Point.”  When that point is reached, the directive provides for receiving “the best available palliative care,” for receiving no medical treatment for conditions that could lead to death, and for beginning voluntarily stopping eating and drinking (VSED).  In addition, it provides for no revocation of the directive, giving one’s health care surrogate the duty to determine that the end point has been reached.  It also provides that any health care institution caring for the person accept the terms of the directive or make provisions for it to be implemented.

One key factor that sets FEN’s dementia directive apart from all the others is that FEN will provide free legal representation to those who use its directive following the terms under which it is offered.  For the directive to serve its purpose, all health care participants must be willing to implement the VSED instructions.  Litigation may be the only recourse to have it implemented.  Because there are no definitive nationwide court decisions regarding following VSED instructions made while still mentally competent on behalf of one’s future demented self, the decision by FEN to offer to litigate the issue at no cost to the patient or family is an extraordinary offer.

Anyone who wants to use the dementia directive may do so, but if a person wants to take advantage of the offer from FEN to legally support the directive in a court, certain steps must be taken.

As explained by Janis Landis, immediate past President of FEN and Director of FEN’s Dementia Dilemma Initiative, and Robert Rivas, the project will work as follows:

Any individual who wishes to use the new supplemental AD on their own can do so. As mentioned, however, the ability to have it enforced is far from clear. To address this, we will be taking an additional, unique step, not available through any other right-to-die organization. 

Every FEN member will receive an email requesting volunteers for this program. We are looking for people who are experiencing the early stages of dementia (diagnosed or not), but who are competent to execute an Advance Directive, or whose age and family history make them fear they will soon begin to experience dementia. 

Volunteers will be asked to provide some basic information such as age, state of residence, contact information, and current health. 

Robert Rivas, FEN legal counsel, will contact each individual to discuss the program and key criteria. For example, it is vital that the patient have a health-care surrogate who is supportive of the patient’s request. There will likely be considerable pressure on the surrogate by care-givers to allow hand feeding. 

In addition, the patient must be willing, if necessary, to be the subject of a civil action to enforce the [directive] if its terms are not respected by a health care provider. This could mean publicity. 

Because court records are open to the public, the [directive] user’s name and that of the health care surrogate could be published. 

Final Exit Network’s plan is to seek out opportunities to shape the law of the future by establishing precedents today. Virtually all health care 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 pain medication – can be a peaceful and dignified way to avoid the pitiful and pointless final stages of dementia. 

We will evaluate criteria and usefulness as we progress with this initiative. But be assured, there will never be any cost to participants, and if selected, you may drop out at any time. 

If you wish to proceed on your own in this issue, use the [directive] form available on our website and attach it to your current Advance Directive. 

Legal background for executing directives that pertain after loss of competency

Retired Rutgers law professor Norman Cantor has explained that American law supports the efforts of competent persons to control the medical fate of their subsequent incompetent selves.  Starting with the Quinlan case in 1976, the courts have established a fundamental right of competent persons to reject (or accept) life-sustaining medical interventions.  This right is based on self-determination and bodily integrity (the interest in being free from nonconsensual invasion of one’s body), and various courts have found support for this right in the common law, state constitutional provisions, the liberty clause of the 14th Amendment of the US Constitution, and the right to privacy (seen by some as a right that arises out of other enumerated rights).

And these courts have readily held that a competent person’s right to control medical intervention is not lost by onset of incompetency.  If the now-incompetent patient has made known clear preferences regarding post-competence medical care, those preferences will control the medical care they should receive.

Although no clear legal authority yet allows such decision-making, if we can’t decide that point for ourselves, what then is the meaning of liberty?

More about how the FEN initiative will work

Brian Ruder. President of Final Exit Network, has offered further explanation of the supplemental dementia directive initiative:

1. Click here to review the Supplemental Advance Directive for Dementia Care, discuss it with your family and your surrogate, and decide whether you wish to participate in our litigation initiative.

2. To be eligible for consideration, FEN members must have:

●    A well thought out Advance Directive, properly signed and witnessed.
●    A designated Health Care Surrogate form, also properly signed and witnessed. (And notarized, if required.)
●    A surrogate who is willing to be part of this initiative and is able to be a firm and committed advocate for you.
●    To remain in the program, individuals must maintain their FEN membership (unless unable to do so because of advanced dementia).

3.  If so, send an email to <fenattorney@gmail.com> and indicate your interest.

In that email, provide your full name, address, email address, phone number, age, and a brief statement of your current health status (that is, whether you have been diagnosed with any form of dementia or diagnosed with any other illness that would prevent you from having phone consultations with our lawyer).

4. FEN’s attorney, Robert Rivas, will contact each of you individually to discuss the program in detail so that you and he together can decide if this program is right for you.

5. As part of the conversation, Robert will discuss with you the need for a local attorney licensed in your State to work with him. If you are accepted into the program, he will work with you to identify such a lawyer and FEN will be responsible for his fees.

6.  As Robert will discuss with you, there is very little legal guidance in State cases, and your request may not be honored. However, we hope that use of this Supplemental form and our litigation efforts will begin to create more favorable judicial rulings.

7. You must also be willing, if necessary, to be the subject of a civil action to enforce the Supplemental [dementia directive] if its terms are not respected by a health care provider. Because court records are open to the public, your name and that of your surrogate may also be made public.

8.  If you elect to proceed, Robert will give you instructions for completing and submitting your AD, Health Care Surrogate form, and Supplemental form.

9. There is no charge for this program. If you should require litigation in support of your Supplemental AD instruction, it will be provided at no cost to you.

10. If you are not completely sure, submit your information as shown in step 2. When you speak with Robert you will have a chance to clear up any questions you may have. If you do choose to proceed, you may withdraw from the program at any time.

Conclusion

In most states, we are able to decide in advance of mental incapacity how we want to be treated in virtually every aspect of our lives.  Examples include what will happen to our property, who can serve as a guardian should we need one in the future, who cannot serve as a guardian, who will control a bank account and make financial decisions for us if we become unable to do so because of mental incapacity, whether we consent to electro-convulsive treatments, how we want to be buried, who will be in charge of final arrangements, where we want to live and die, whether to receive nutrition through a feeding tube, as well as other medical and non-medical decisions about our lives if we lose mental capacity.  It only makes sense that we also should be able decide while mentally competent whether, while no longer competent, we want to be hand-fed, a procedure that generally requires training and certification if provided in an institutional setting.

The supplemental advance directive for dementia initiative is important to our ability to control what happens to our lives and our bodies if we lose mental capacity.  The directive is available to those who do not want to live into the later stages of dementia.