Comparing dementia advance directives–Part 1

Over the past two years or so, several organizations and professionals have proposed dementia advance directives or supplements (referred to herein as “dementia directives”).  Readers should be aware that advance directives have always been a source of contention among attorneys who advise clients about their use.  

Many attorneys specializing in elder law prefer to draft their own advance directives for clients to correct what they see as deficiencies or defects in the state- prescribed directives.  It is important to realize that such disagreements among attorneys are to be expected.  So everyone should exercise diligence to assure that any directive executed reflects their own decisions.  If not, the directive should be changed.

Prof. Gere Fulton, JD, PhD, has identified an example of a defect in advance directives [living will is a common name for an advance directive prescribing medical care under specified conditions]–

Many of the early statutes specified that the living will would be controlling only if the declarant were either terminally ill or permanently unconscious.

If a person wants the directive to control when a person is mentally incompetent, but not “terminally ill or permanently unconscious,” that condition must be added to the directive.

Vagueness is also a problem.  Note the language in choice (1) of the California Advance Health Care Directive:  “I have an incurable and irreversible condition that will result in my death within a relatively short time . . .” (Emphasis added.)  What exactly is “a relatively short time?”  That vagueness is why I prefer, in some respects, the language found in the Texas Advance Directive form, which provides two choices:  

If, in the judgment of my physician, I am suffering with an irreversible condition so that I cannot care for myself or make decisions for myself and am expected to die without life-sustaining treatment provided in accordance with prevailing standards of medical care:

__________I request that all treatments other than those needed to keep me comfortable be discontinued or withheld and my physician allow me to die as gently as possible; . . .”

OR

__________I request that I be kept alive in this irreversible condition using available life-sustaining treatment. (THIS SELECTION DOES NOT APPLY TO HOSPICE CARE.)

Dementia is “an irreversible condition.”  In the later stages of the disease, a person “cannot care for” themselves or “make decisions for” themselves.  But here the language in the Texas form becomes troublesome.  Does it mean that the person is “expected to die without life-sustaining treatment” from the dementia or from some other condition that arises in addition to the dementia?

If I am an insulin-dependent diabetic with dementia and could no longer “care for myself or make decisions for myself” and will die without “life-sustaining treatment”– insulin – this directive might provide me a choice that I would want.  However, it may not be interpreted to give me the death I want if I have dementia without some other life-threatening condition.

These are examples of some of the problems attorneys might see in the state-approved advance directives.  Fortunately, all of these directives allow for adding further information that can clarify the terms of the directive.  The other choice is to write a completely separate directive, which many attorneys have done, both for themselves and their clients.  No matter the disagreements among attorneys and the deficiencies of the state-approved directives, everyone should make sure their advance directives say what they want them to say.  We have a constitutional right to do so.

Previously, others, such as retired law professor Norman Cantor and I have shared our own personal dementia advance directives.  Last year, I developed my personal directive into one that could be used easily by others. Several right-to-die or end-of-life organizations, as well as individuals, have proposed dementia directives.  Some have focused on clarifying values of dementia patients; others are focused on the specific results sought, or a combination of the two.  Taken together, these efforts have some common elements and some differences.

Selected dementia directives

Dementia directives by authorship include:

A.  Norman Cantor, JD (personal dementia directive)

B.  Barak Gastor, MD (general dementia directive)

C.  End of Life Washington (general dementia directive)

D.  Compassion & Choices (general dementia directive)

E.  The Conversation Project (by Katy Butler, author of “The Art of Dying Well: A Practical Guide to a Good End of Life”) (general dementia directive)

F.  End of Life Choices New York (general dementia directive)

G.  Lamar Hankins, JD (general dementia directive)

H.  Final Exit Network (developed by Robert Rivas, JD) (general dementia directive)

What follows is an attempt to help those interested in such directives to compare them.  All of the directives are based on the notion that all competent people should be able by law to decide in advance of losing their mental competency what will happen to them after dementia has taken that competency away.  The reasoning is that, if we can decide our medical treatment in advance, we should also be able to decide other ways in which we are treated and cared for.   For some, this would include deciding to voluntarily stop eating and drinking (VSED) after a time when we have reached a point that will trigger the decisions embodied in the dementia directive.

Elements of dementia directives

Several elements are included in the directives collectively, though all elements may not be in each one.  As you read each directive, you could use these elements as a check-list:

1.  explanation of the use and purpose of the directive

2.  reference to the appointment of a medical agent, proxy, or surrogate

3.  when or at what point the dementia directive will be triggered, including the symptoms or conditions that will be used to trigger decisions prescribed in the directive

4.  directive to receive the best palliative care available, which may include sedation

5.  forego any life-prolonging treatment once the directive is triggered, which would include on-going treatment for health conditions existing before the triggering of the directive and new conditions that develop after triggering

6.  prohibition against receiving nutrition by medical means, for example, intravenously, by nasogastric tube, or by gastrostomy tube (see article)

7.  prohibition against receiving food and fluid, being offered food and fluid, being encouraged to accept food or fluid, or having food or fluid within the maker’s ability to sense its presence (by smell or sight)

8.  prohibition against hand-feeding, with explanation that maker views hand-feeding as medical care or treatment, and/or as an assault because it is unwanted

9.  provision for use of moisturizers to relieve dryness in the mouth, nose, and lips (oral care)

10.  no recognition of acts (gestures, responses, comments, or utterances) that could be seen or interpreted as modifying directive if the person is mentally incompetent

11.  who will decide when directive has been triggered

12.  what standard will be used by decision-maker

13.  incorporation of dementia directive in existing advance directives

14.  some witness/notary requirement

15. provision to require transfer to a facility that will carry out directive if in an institution that will not honor it

This last element may be a problem for those who live in a continuing care retirement community in which they have paid a great sum of money to be cared for until their death.  A transfer to a new care facility may be impossible to manage financially.

The best approach to this issue is to interview any long-term care community or facility before admission to make sure that it will honor all advance directives.  An even better idea is to have all advance directives incorporated into the contract for admission to the facility or program.

In subsequent posts, other elements of dementia directives will be discussed.