Choosing the Right Living Will

Most of us have heard of a "Living Will." It is document in which you write out your health care wishes, including any desires you may have about the use of "aggressive and/or invasive" life-sustaining medical treatment. It is to be used if questions arise about what kind of medical care you would or would not want, in situations where you are too ill or injured to make your wishes known.

A "medical power of attorney" or "health care proxy" document is somewhat different. It allows you to name someone you trust to make health care decisions for you, if you are ever too ill or injured to make those decisions for yourself. He or she must always consult your Living Will, and can only make decisions in your behalf that you have not already made for yourself.

The term "Advance Directive" is an umbrella term, and it refers to both Living Wills and Medical Power of Attorney documents.

Naming someone as an "agent" (or as a proxy, surrogate, or representative decision-maker -- the terms vary according to the laws in your state) can be very important. Although most states allow family members to make health care decisions for their loved ones, it is often difficult for families to agree on what should be done. Sometimes their desires might supersede your own. Further, you may find that the person you most trust, or the one you feel is most capable, is not a family member. Consequently, it is usually best for you to name the person you want making these decisions. While he or she can still consult with others, the final decision is his or hers alone. This can avoid the distress of disagreements, or even critical delays in medical care at times of contention.

Now that you know the purpose of a Living Will and a Medical Power of Attorney (or proxy appointment document), you need to consider the kind of forms you should use.

Most people simply select the standard form available in their state -- often called a "statutory" advance directive. Many of these forms are available for free on the internet (see: ), and they are usually quick and easy to complete.

However, a large body of research has identified many short-comings in these documents. Virtually all of them have been found to be overly simplistic, confusing, laden with legal jargon, and so vague and unclear in the kinds of terms they use that medical practitioners were unsure how to apply much of what was recorded in them.

Sometimes they may even be biased in ways that inhibit or outright limit an individual's ability to fully express their personal wishes. For example, one legal research group found their state's advance directive to be "more protective of provider liability than patient rights" (see: Tyminski, MO. The current state of advance directive law in Ohio: more protective of provider liability than patient rights. Journal of Law and Health. 2004-2005;19(2):411-49).

Another research group explained the problem, noting that, "...the development of statutory forms occurs in the legislative arena, [so] their content is the result of a political rather than a ‘scientific' process," and because of "political compromise, ...many of the forms ultimately passed by the legislatures are not optimal from a consumer perspective" (see: Hoffmann, DE; etal. The dangers of directives. Journal of Law, Medicine & Ethics. 1996;24(1)(Spring):5-17). They concluded by noting that the use of biased, confusing, and vague documents was outright "dangerous," as these documents are used to addresslife-sustaining medical care wishes.

The American Bar Association has agreed, and has emphasized the following: "The statutory advance directive is not necessarily the exclusive, or even the best, pathway for individuals to follow," and they suggest that alternative documents  "may be especially helpful as a...replacement for statutory forms where restrictions in a statutory directive prevents the individual from fully expressing his or her wishes" (see: American Bar Association, Patient Self Determination Act State Law Guide, 1991, page 18. Government printing office, Washington, DC).

Given this information, what should you do? How can you locate a quality Advance Directive document?

One popular option is the Five Wishes Living Will, which is available through Aging With Dignity (see ). It is legally valid to use in 42 states. This document addresses the following:
- The person I want to make care decisions for me when I can't.
- The kind of medical treatment I want or don't want.
- How comfortable I want to be.
- How I want people to treat me.
- What I want my loved ones to know.

Under the heading "The Kind of Medical Treatment I Want or Don't Want" the document prompts decision-making in three key areas:
- Close to death... (i.e., terminally ill or injured)
- Permanent and severe brain damage and not expected to recover...
- In a coma and not expected to wake up or recover...

These are the same three areas that are addressed in most standard Advance Directives, although the Five Wishes document is written in a far more "user friendly" way.

However, in 2002 a university research group combed through more than 6,000 medical, legal, and research publications, every statutory advance directive in the United States and four major US territories, and surveyed more than 900 experts and members of the general public. They discovered that there are actually more than 30 key issues that should be addressed in a "comprehensive" living will (see: Strengthening Advance Directives: Overcoming Past Limitations Through Enhanced Theory, Design, and Application. Available via Lifecare Publications - #sad).

They also researched the kinds of information and authorities that ideally needed to be included in a document appointing a representative decision-maker. In doing so, they discovered 17 additional elements that should be specified (beyond those found in a standard medical power of attorney form), in order to fully empower the individual named.

The "comprehensive" advance directive that was developed is known as the Lifecare Advance Directive, and it is available at: .

Regardless of the form chosen, a quality living will is crucial. It should prompt, guide, and assist individuals in fully and clearly expressing their health care wishes. When a comprehensive array of options are presented, it can inspire important thinking, discussions, and decisions far more effectively than trying and "brainstorm" them all alone.

In addition, it aids an individual in fully writing out instructions that are important. Wishes that are not written down are very difficult to even remember, much less to follow-up and honor.

It should be emphasized that an appointed representative can only make quality decisions if useful and complete information is available. Otherwise, he or she may be forced to chose according to his or her personal preferences, instead of being able to determine what you might actually want. Further, should anyone question the decisions of an appointed representative, it is ideal when he or she can point to specific evidence of one's wishes whenever possible.

Certainly every adult should complete an advance directive. But, it is also important that the documents chosen are well crafted and highly effective for the important purposes intended.

-- JT McKay, PhD