Advance Directives

“An Advance Directive is only as strong as the surrogate who enforces it.”

Final Exit Network newsletter Fall, 2020

SOME BASICS

Now that you have done extensive Planning, it is time to get all that effort condensed into your advance directive.

Advance Directives (ADs) are the legal way one goes about giving instructions to others for your health care when you can’t speak for yourself. The others, especially your designated agent, need to know what your decisions would likely be if you were able to speak out. Advance directives combine two prior documents, the living will and the durable power of attorney for health care. Some states still have these two. Here the term Advance Directive or AD includes livings wills with power of attorney.

Where does the term “advance directive” come from? The Supreme Court of the United States says we have a constitutional rightSome states have exceptions if the principal is pregnant.
to forego treatment, which includes stopping treatment. State laws allow a person to:

express now what s/he wants in the future, when s/he can’t speak for self, i.e., when capacity is lost.
give to someone authority to speak for her or him. So the word “advance” means write or speak now for action later.

There are many forms of advance directives to chose from. Many states have statutory forms which can be found here. Lawyers have forms. Hospitals have forms. Forms can be found on the internet. A few forms are mentioned in the Deep Dive section and in the Resources/Other Advance Directives section.

This website has an Advance Directive form, discussed below.

This website has two advance directive forms. The first is a general one that anyone can use. The second is directed specifically to people who have early-stage dementia.

Behind the options often are biases. There is only one bias that matters: yours. With your planning, you know what you want. So feel free to change any form to fit your wishes, or even start from scratch – without a form (but forms are easier, especially ones designed for your state).

ELEMENTS OF ADVANCE DIRECTIVES

It is recommended that your AD address the problem of getting dementia. If your AD form doesn’t cover it (the one here does) then a dementia supplement should be used. Whether you have it in the directive or the supplement, be sure to address dementia in your letter to your agent (see the list below of topics for the letter).

The form of directive discussed here doesn’t need a dementia supplement, as dementia is covered without mentioning the word “dementia” (Choice #5 at the bottom of page 2 of the directive); with this form you still need to address dementia in your letter.

Here are the elements found in most advance directive forms. You

state the medical treatment(s) or quality of life you want (or don't want) when you can’t speak for yourself.
designate the person who will speak for you when you can’t speak for yourself. This person is called your agent. You are the principal.
give the names and addresses of

the principal
her or his primary doctor
the agent and alternate agent(s)

state your burial wishes.
donate your organs if you wish.
provide for formal execution.

The first two are the key: What do you want? And who is going to carry out your wishes? You are free to state your wishes – there are no content restrictions except in few states.

Your agent can be anyone you trust, who will, hopefully, be aggressive in carrying out your wishes..

There is one strict requirement. Advance directives must be executed in the manner prescribed by law in the state in which you reside. The most prevalent ways are notarization or witnessing by two persons.
If witnesses are used most states have limitations on who the witnesses can’t be, such as those that are your health care givers, and/or are those that are mentioned in your will or estate plan.

The execution requirements of all states can found here.

INCAPACITY INVOKES AGENT POWERS

When someone can’t speak for her or him self, s/he has lost mental capacity, or is said to be incapacitated. In legal matters the term is competency, which is more strict. Unfortunately the terms are often used interchangeably.

Doctors often determine a patient’s capacity Competency is often used in lieu of capacity.
by asking questions; they will ask do you understand:

what your illness is and what the disease is doing to you.
what the progression is likely to be.
what the possible treatments are and the difference between them.

One can have decisional capacity for her or his health care without having the ability to understand technical medical terms, or other complex matters such as the stock market or finances.

If you lack capacity by law you cannot speak for yourself. Therefore, others will be making medical decisions for you. If there is no advance healthcare directive, then state law specifies which relative(s) speaks for you. With an advance directive the one that will speak for you is the agent you have designated. The agent is often also called the proxy or the surrogate.

THE POWER OF YOUR HEALTHCARE AGENT

At any time you are incapacitated by injury or disease, your surrogate can revoke, change or add medical treatments. Doctors must comply as if you were speaking. When the agent’s decision incidentally leads to death, is the agent at risk criminally? The answer is no. But when the decision is to intentionally cause death, the answer is generally yes. This is true in Iowa and perhaps a few other states. When the intended death comes from an advance directive (called Stopping Eating and Drinking by Advance Directive), the answer is that there is no criminal risk in Nevada, Vermont and Arizona. There is criminal risk in Iowa. In the remainder of the states the laws are not clear. For more information on this issue, watch this video by law professor Thaddeus Pope and read the instructions to the second advance directive form in this website, for people with early dementia.

TWO UNIQUE, AND PERHAPS RADICAL, QUALITY OF LIFE ADVANCE DIRECTIVE FORMS

GENERAL FORM

The author of this website has developed an Advance Directive form that is unique in several respects:

It focuses solely on quality of life.
It is short.
Its key provisions are on one page – easy to find and read in an emergency.
It uses a “letter to my agent” which becomes an important adjunct to the directive.
It has a progression of choices that go further than most forms.

The first page is for names: yours, your doctor’s, your agent’s and alternate agent. Addresses and phone numbers are asked for too.

The second page contains the heart of the directive. It gives instructions to the agent and the doctor, and the critical choices one can choose from; these are discussed below.

The third page contains miscellaneous provisions such as after-death wishes and disposal of remains, and the lines for signature and date. Don’t forget to add notarization or witnesses, or whatever is required by your state.

This form is focused solely on quality of life in part because people understand quality of life. Also a form can’t possibly specify all the procedures that might come into play. Yet, something can be said for the key ones, viz, resuscitation and artificial breathing.

One advantage of the short form is that doctors, especially emergency room doctors, don’t have time to read six or seven pages from your lawyer. Often doctors don’t even try.

This leads to the need to explain your directive to your surrogate. Your “letter to my agent” is critical. Another reason for the separate letter is that you can put your wishes into your own words; you don’t need to use legal or medical terms. The possible content of the letter to your agent is given in the separate subsection below.

Here are explanations of the choices that are given on page 2 of the form. They are progressive.

#1. TIME LIMITED TRIALS. How long the trials go is up to your agent in consultation with your doctors.
#2. VEGETATIVE STATE. Nearly all of us don’t want to live in that condition, and this gives you that option.
#3. DISCONTINUE MEDICAL INTERVENTIONS. Now quality of life (quality vs. duration) comes into play. But your quality life is not defined in this form. Your agent must know your quality-of-life wishes. That’s the strongest reason that you must have a robust letter to your agent. Of course the letter is preceeded with robust conversations with your agent.
#4. ASSISTED FEEDING. This section says don't entice me to eat. Let me eat what I want, and no more.
#5. There are four choices within #5, but they are preceded by a statement, if checked, that they are "not to be implemented if they put my agent or any of my caregivers at criminal risk" by initiating Stopping Eating and Drinking (SED) SED is used here, because the patient is not initiating VSED him/herself. That is, it is no longer voluntary. See the deep dive page.. This is because the laws in most states are not clear that the agent can institute SED. This issue is discussed further in Deep Dive. The four choices for instituting SED are:

Whenever I show no desire to eat or drink.
Even if I show a desire to eat or drink.
Even if I say, utter, or otherwise indicate that I wish to eat or drink.
Even if I say, utter, or otherwise indicate that I wish to live.

Please be aware that by choosing one of these four, and NOT checking #5 put the agent and caregivers at risk of criminal prosecution, probably for murder. The exception is Nevada, where the law allows instituting SED. One purpose of having #5 in this fashion is to make people aware of the need for changes in the laws to permit SED in the other states.

SPECIAL FORM FOR PEOPLE WITH EARLY STAGE DEMENTIA

The instructions with this form explain it in detail and so are not repeated here. The form is unique in that it is one of the first, if not the first, to not only give an option for SED by AD, but also to explain the criminal risk to the agent, the family and others that may be involved in terminating nutrition and hydration after decisional capacity is lost. Also included in the form is a work-around of the problem of criminal risk.

WRITE A LETTER TO YOUR AGENT

Below are some topics that might be included in your letter to your agent. Write anything you want that expands on what you have in your advance directive. Write in your own words, the way you feel. There is only one limitation: you must not be inconsistent with what you have written in your advance directive.

The letter need not be formally executed. That is, it need not be notarized or witnessed as your state requires. You may want to give your letter to your primary care physician or write him or her a separate letter.

That said, it would be wise (best practice) to execute the letter at the same time as you execute your advance directive, and have it attached to your directive when you have it notarized or witnessed. But this is not necessary. Nonetheless, it should be referenced in your advance directive. Also note in your directive that the letter may be changed or amended from time to time without amending your directive. Of course any change or new letter must not be inconsistent with your advance directive (in such case, change the advance directive too).

POSSIBLE TOPICS FOR YOUR LETTER

Give detail on what your end-of-life wishes are—what you want, or don’t want. Be specific. For example you may want to express your ability to:

live in your own home
partake in activities that you enjoy
recognize and communicate with family and friends
not live with pain, especially pain that is persistent and incurable.

Would you like to have hospice care when appropriate?
Who in your family, or among your friends, the agent might like to consult with, or who s/he should not consult with, and maybe why.
Where, such as at home, you would like to spend your last days.
Whom you would like to spend your last days with; whom would you rather not.
If you are open to hastening your death, explain what this means to you, and perhaps what led you to this view.
Include any thoughts you have about how you want to live if you get dementia, such as:

Do you want to shorten your life to avoid the last stages of the dementia?
If so, how do you want to do that?
And at what point in the progression?
See the discussion in the Dementia section.

Importance or unimportance of religion in your life and your final time in this world.
Explain in more detail your wishes about organ donation, disposal of your body.
Why you have or haven’t executed a Physicians Order for Life Sustaining Treatment (POLST).
What ever else seems important to you for your agent to know, even though you may have discussed such with her or him.

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