Understanding Advance Directives and their problems for dementia

Every human being of adult years and sound mind has a right to determine what shall be done with his own body.  – Justice Benjamin Cardozo, Schloendorff v. Society of New York Hospital, 211 N. Y. 125, 129-130 (1914)

On this blog, we have dealt often with aspects of advance directives.  To prepare for using a dementia directive, readers may benefit from a discussion of the development of advance directives and problems with their language.

I rely in part on the work of Prof. Thaddeus Pope; the work of retired Prof. Gere Fulton, the co-author of Perspectives on Death and Dying, a text used in courses on that subject; and my own experience as a lecturer and researcher about advance directives and as an attorney helping people complete advance directives.  Profs. Pope and Fulton have both law degrees and Ph.D.’s related to this field.

In its simplest form, an advance directive is a written record of a person’s instructions about what medical treatment(s) they want if they are unable to make their wishes known at some time in the future.  These instructions may include the name of someone who can express their medical decisions for them and advocate for them when they are unable to do so for themselves.  Sometimes, a separate instrument is used to appoint a health care agent.  Having an agent is just as important as expressing one’s health care decisions in writing.

Development of statutory advance directives

In the 1930s, the human rights attorney Luis Kutner advanced the idea of a “living will” as the New York Times explained in his obituary in 1993:

The plight of a friend dying a slow, painful death after a violent robbery drove Mr. Kutner to write his first “living will” nearly 60 years ago. The thought behind the document was to allow patients to specify at what stage life-sustaining systems should be shut off when conditions become hopeless.

“Living will” is an early name used for an advance directive that provides instructions about future medical care.  Beginning in 1967, advance directives were promoted by the Euthanasia Educational Council, a sister organization to the Society for the Right to Die, formed in 1938.  In the 1970s, states began creating statutory advance directives in an effort to accomplish Kutner’s purpose.  Publicity about the 1976 Quinlan case in New Jersey created further interest in such directives.  The Cruzan decision in 1990, the first right-to-die (RTD) case decided by the U.S. Supreme Court, sped up the creation of statutory advance directives in the states after the court accepted Missouri’s requirement that a person’s views about the removal of life support must be shown by clear and convincing evidence. 

Most people have concluded that putting future medical treatment instructions in writing with an advance directive is the best way to satisfy the standard approved in Cruzan.  However, it is not necessary to use statutory advance directive forms.  In fact, elder law attorneys, who work frequently with advance directives, have many criticisms of the state directive forms and often write their own versions for their clients.

It is worth noting that many states have an advance directive form that allows for more than making known treatment decisions and appointing medical agents (sometimes referred to as proxies or surrogates).  Some statutory advance directives include provisions for organ donation, anatomical donation, body disposition, guardian or conservator selections, and designation of a primary physician. 

A few states have separate forms on which a person can name a medical proxy, agent, or surrogate–someone you trust to speak for you if you are unable to communicate your wishes about medical treatment at any time.  To create more confusion, some states allow the appointment of a medical agent both in a medical directive form and in a separate form for appointment of medical agent.  Any conflict in who is appointed if a person completes both forms will probably be resolved by determining which was the last form completed, which is the one likely to control.

Advance directives for all the states (and Washington, D.C. and Puerto Rico) can be found at the website of the National Hospice & Palliative Care Organization (NHPCO).

Problems and advantages of the state forms

There are two primary advantages of the statutory advance directive (AD) forms: (1) clinicians and hospital personnel are familiar with them and (2) many provide liability protection for medical personnel who follow them.  It is not known whether supplements to the statutory advance directives will be afforded the same protection, but if they are incorporated into statutory directives that invite additions, it seems reasonable that the additions would provide the same liability protection, provided the language in the supplement is unambiguous.

Prof. Fulton has pointed out,

Many of the early statutes specified that the living will would only be controlling if the declarant were either terminally ill or permanently unconscious.  That is the main reason why I have always cautioned against the reliance on a living will [directive to physicians] . . . and recommended the use of [a state-prescribed AD] as long as it is appropriately witnessed and/or notarized.

The California advance directive form is an example of a modern directive that allows a person to make a choice not limited to terminal illness or permanent unconsciousness:

I do not want my life to be prolonged if (1) I have an incurable and irreversible condition that will result in my death within a relatively short time, (2) I become unconscious and, to a reasonable degree of medical certainty, I will not regain consciousness, or (3) the likely risks and burdens of treatment would outweigh the expected benefits, . . .

It also allows a person to choose to have their life “prolonged as long as possible within the limits of generally accepted health care standards.”  It includes a provision for palliative care and a place for “OTHER WISHES” that includes the following language:

If you do not agree with any of the optional choices above and wish to write your own, or if you wish to add to the instructions you have given above, you may do so here.) I direct that: __________________________ .

This is the place in the California directive form where a person can add any supplemental instructions, including those that deal with dementia.  

But 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 have preferred 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.)

Advance Directive forms and dementia

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 the “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.

A careful reading of many state forms will lead to these and similar questions.  Correcting deficiencies in the state advance directive forms is the challenge when considering dementia.  Such correction will be important if a person with dementia (or anticipating dementia) either does not want to hasten their death using inert gas or some other peaceful, effective method, or if they miss the opportunity to hasten their own death due to injury or illness before being able to do so.

Fortunately, nearly all advance directive forms provide a place to add supplemental directives or explanations that can make clear exactly what the person’s health care decisions are if they become unable to make the decisions for themselves.  This is why we have written on this blog previously about such supplements: my personal dementia supplement done twenty years ago can be found here; End of Life Washington’s dementia directive developed in late 2017 is discussed here; former Rutgers law professor Norman Cantor’s personal dementia directive is discussed and linked to here; a New York clinician’s dementia directive is discussed and referenced here; Compassion & Choices dementia directive is analyzed here.  

Recently, as a result of a series of presentations about the choices we have if we are diagnosed with dementia, I have developed a comprehensive dementia directive that can be used by anyone anywhere in the US.  I sought feedback from and shared earlier drafts of the directive with a wide group of people, including those unfamiliar with ADs, those who teach about their use, psychologists, attorneys, and those who have done the usual ADs for themselves.  It can be found online here and here.

The Final Exit Network will soon publish a supplemental dementia directive, which it plans to defend in court should that be necessary.  When the development of that directive is finished, we will publish it on this blog and it will be available through the FEN website.  

As should be clear by now, there are many ideas about how to write a dementia directive.  Until there is a cure or preventative for dementia, this effort to fashion a dementia directive may be our best hope to avoid an undesired end for those who are unable or unwilling to hasten their own deaths by direct means.