On Advance Directives / Living Wills

Living Wills and Their Variations: A Simple Introduction
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E.L. Erde, Ph. D., Professor, UMDNJ-SOM, Department of Family Medicine
Stratford, NJ 08084
erdeel@umdnj.edu

People use Living Wills or Advance Directives to direct their medical care when they become unable to do it for themselves. The purpose is to avoid conflicts, confusion, and lack of information about the patient’s preferences when a crisis arises. The Living Will can (1) guide the care, (2) name someone to substitute for you in decision making or (3) both.  The substitute decision maker is called “a proxy decision maker.”

Living Wills are legal documents. Despite that, it is probably best to make them with a doctor’s help because the legal part of making one can be much easier than the medical part. Indeed, the legal part is usually easy enough to do without a lawyer.

The medical part is about what you might want in the way of care when, due to illness or injury, you are unable to do it yourself. It can direct many options in many situations. You may direct that doctors try all reasonable, life-saving care. You may direct that your doctors make you comfortable and ease your dying. You may direct that they make some attempts to save you but also restrict which ones or for how long. You may allow or forbid other things of interest to you (being in research).

You can state various choices for different medical situations. This is why it is best made with the help of a doctor rather than a lawyer. The doctor knows of situations the patient and the lawyer may not consider. For example, someone once told me that he flatly rejected tubes and machines in his living will. I asked if he ever heard of Guillan-Barre Syndrome. This is a disease in the nerves that leads to paralysis and may cause a person to stop breathing and die. But the disease is often self-limited. If the person is on a ventilator for a few days, he may recover very well. The patient admitted that he would want the tubes and machines in that situation. Many lawyers do not know to question a person to avoid mistakes like this.

It is best to focus your document by what you value about life rather than by the equipment you want to avoid. For example, avoid “I never want a ventilator.” Instead say, “I never want to be kept alive by a breathing machine if I am permanently unconscious.” This is just an example. You may have the exact opposite desires. For example, you may want to be kept alive even if you are permanently unconscious or need a breathing machine far into the future. Write it as you prefer it.

The term “Living Will” has come to have many synonyms. They make a “word-salad.” Synonyms and closely related words include

• “Advance care planning”
• “Advance directive”
• A kind of power of attorney,
• Proxy directive
• Instruction directive
• Combined Directive
• Guardianship

These will be explained below. Most refer to a document that a person makes when they are able to think well and make decisions. When patients are incapable of a thoughtful choice, they lack decision-making capacity. Sometimes people also call such patients “incompetent” (but officially incompetence must be declared by a judge). The document is the patient’s way to direct the medical care that that patient should get when they are incapable of reasonable decision making. If it is valid, it has the force of law.

The legal idea behind Living Wills is that people have a right to chose or refuse care when they are “competent.” They are not supposed to lose their rights after becoming incapacitated . Thus, they need a way to direct the exercise of their rights when they cannot do it. That is the “Living Will”.

Thus a Living Will should describe your thinking about when you want and when you reject kinds of care in different circumstances. Some states set very high standards of evidence before allowing a patient to forgo care. Hence, your directive should be as clear as possible.

Above I listed many terms related to all this. Next I will define them and suggest some strengths and weakness of each kind.

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The general name for a document of types 2-6 is Advance Directive.

There are many different printed forms for them. This is because many interest groups have made their own form to fit their values. Religious organizations, hospitals, citizens’ groups, propose forms consistent with their moral perspective, and some states require a particular form. New Jersey, for example, does not. It created a sample that is optional. See the complicated brochure and sample forms at the following link: http://www.state.nj.us/health/ltc/advance_directives.doc

As each state may have different formalities, this part of the process of making one has some legal aspects. They should be tailored to the state in which you live when you make it. You can also post your advance directive on the Internet! See http://www.uslivingwillregistry.com/register.shtm

Currently no one is required to make an advance directive. If you do make one, you may keep its existence or contents confidential, even from your proxy or your family members but that is usually unwise. The whole purpose is to avoid conflict, confusion, and lack of information about the patient’s preferences when a crisis arises. Rival family members may resent one another about the choices you made. Give them all a chance to adjust to the content of it and discuss it with you. That is why secrecy about it can be counter-productive.

Stating your values:
Minimize mentioning what equipment you want to reject. So too avoid refusing certain medical procedures. Instead state your values. For example in writing it, have one of the following statements in mind to shape how you word your directive:

1. “to me my life is worth sustaining no matter what my condition,”Â
2. “to me my life is not worth sustaining unless I can experience affection or pleasures,”
3. “to me my life is not worth sustaining unless I can remember large aspects of my own story” (as tested through discussion with me)Â
4. “to me my life is not worth sustaining unless I can reason about my situation/future”

Some wording is useless or worse. One form says, “Do not treat me if there is no medical probability of benefit.” There are two reasons that this will not do the job most patients would want. First, many doctors will not say that there is “no probability” until it is extremely late in the course of dying—possibly much later than the patient intended. Second, most of us cannot tell what you count as a benefit, etc.

In making a proxy-directive you appoint someone who will speak for you and make decisions based on your comments and history. Name several persons. Prioritize the list. Get consent of those you select, and give them copies of the document.Â
Combined-directives contain both (1) what an instruction directive has and (2) names someone to interpret and apply the values of the patient if they are not clear in the particular case. This type of Advance Directive has the most power and flexibility.Â

Here is a sample Advance Directive (PDF file) structured by specific patient values. Other value-sets would have very different samples or models.