Understanding the Limitations of
Poorly Designed Advance Directives

Research indicates that completing a poor quality advance directive could actually be worse than doing nothing at all. How is this possible?

To understand the drawbacks of completing a poor quality advance directive, you need to understand the content common to many of these documents, and the related problems that may arise.  

The Use of Confusing Terms:

 
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Many advance directives use vague and confusing terms which can easily be misinterpreted.  For example:
~  Refusing "extraordianary", as opposed "ordinary", medical treatments;
~  Foregoing "heroic measures"; and,
~  Weighing the "burdens versus the benefits" of treatment decisions.


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Advance directives using terms such as these leave family and physicians struggling to understand an individual's true intent.  For examply, what exactly is an "extraordinary" medical treatment?  When might a treatment that was once considered "extraordinary" now be considered "ordinary"?  If a treatment becomes commonplace, even if it is also highly invasive, burdensome, and expensive has it now become "ordinary"?  Could a normally "ordinary" treatment be seen as "extraordinary" when it used in situations of extreme old age and permanent poor health?  Clearly, the definition of "extraordinary" may change a great deal over time and under varying circumstances.

Similarly, any reference to "heroic" treatment measures is also difficult to apply.  When, exactly, does a specific treatment become "heroic"?  Medical researchers universally agree that the use of this term provides little if any direction in later decision-making.

Many advance directives also direct others to "consider the burdens versus the benefits" before making any treatment decisions.  Researchers have also found that this phrase offers no meaningful direction.  The term "burden" can only be properly defined from a very personal standpoint.  What one person sees as a burden, others may judge to be neutral or even positive in nature.  Thus, this phrase is ultimately reduced to little more than a "Please do the right thing" request -- something that one should not need a written advance directive document to secure.

Could the use of such vague and confusing terms become a serious problem?  Absolutely.  All of these terms will eventually be used to guide the use or refusal of life-sustaining medical treatments.  Thus, anyone called upon to apply these terms in your behalf must ultimately make choices that could result in your life being cut far too short, or in unduly prolonging your life in situations of profound suffering and overwhelming misery.

Therefore, using vague and confusing terms can have profound consequences.


A Focus on Diseases and Treatments:
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Many standard-content advance directives focus, largely, on the refusal of medical treatments in situations of specific diseases or conditions (i.e., coma, terminal illness, etc).  Many of them also provide rosters of specific treatments that you may desire to refuse in those situations (i.e., CPR, tube feeding, etc).  Completing such a roster, however, may pose serious problems.  Suppose, for example, you contemplate a condition for which there is no cure today, and you then refuse various specific treatments in the process.  What if, at a later time, the condition becomes curable -- or at least treatable?  Should those treatments that you had previously refused in writing now be used? 

Obviously not.  Yet, your prior written directives may still require the foregoing of important treatments which could prolong your life and/or resolve or improve a condition may later have.  In effect you (and anyone you name to represent you) could be held hostage to these prior wishes. 

Clearly, advance directives which focus primarily on rosters of conditions, diseases and treatments may potentially be dangerous to your health. 


Inhibiting Meaningful Conversations:
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A quality advance directive should always expand personal thinking and increase the breadth and meaning of any conversations held with others.  However, most standard advance directives do not accomplish this goal.  Most are written so narrowly, and are so rigidly focused on very limited issues as to actually inhibit personal thinking and conversations.  Indeed, some state-standard advance directives are designed in ways to actually prevent you from recording other wishes and desires you may have. 

Evidence of inhibited conversations was found in one university study which compared the effectiveness of various advance directive styles against those not using any directive documents at all.  The researchers were surprised to discover that, on the whole, those individuals who held discussions without the use of any advance directive actually performed better (i.e., produced greater accuracy in decision-making exercises) than those who used a  standard state-law-sanctioned document.  By contrast, those who used better designed and content-enriched advance directive documents fared the very best.  

The researchers concluded, in part, that poor quality standard directives left many participants with the false impression that all that should be discussed was to be found in their standard advance directive document.  Further evidence of this was seen in subsequent discussion scoring:  Those using no documents at all ranged much more broadly in their discussions than those with state-standard directives.  And, those with documents that actually inspired further discussion fared the best of all -- and did so in direct
proportion to the amount of enhanced information it contained.

Obviously, the quality of the advance directive document you choose can have a profound impact on the quality of the decisions ultimately made for you at any time in the future.


Appointment-Only Directives Offer No Solution:

There are some who suggest that the solution to these dilemmas lies in appointing someone that you trust to represent you.  Such a person can then make "real-time" decisions with all necessary medical and current health status information already in place.  In the light of the research already presented, however, this approach provides no real solution.  The quality of future choices made in your behalf is only as good as the past information you have left to guide anyone that you may have appointed to act in your stead. 

The fact that a person is caring, trustworthy, and invested in your welfare is of little consequence if they have no idea what you would want.  Indeed, study after study has shown that the odds of accurate decision-making are no better than 50/50 (and often much worse) without actual knowledge of your personal preferences. 


Conclusion

To better understand needed advance directive content, click here.  For real-life examples of what happens when things go wrong, click here. From these considerations and findings you can now better understand the importance of selecting a high quality advance directive. 

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For still further information, read about the development of the Lifecare Directive click here, and more about clarifying your wishes click here, and about the research behind our directives click here.  You may also download a free PDF copy of our 21-page booklet "Should I complete an Advance Directive?" by clicking here



Note:  If you have a loved one who is no longer able to complete an advance directive (due to a loss of decision-making capacity), you should consider obtaining a "Representative Advance Directive."  For more information, click here.  

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