Advance care planning was originally devised as a process to ensure that a person's wishes and values are respected in some of the most important decisions of his or her life when that voice is silenced due to incapacity. Such wishes could be expressed, verbally or in writing, to those who would subsequently ensure that these wishes and values were factored into any decisions regarding healthcare and treatment choices. The importance of having one's voice heard quickly translated into the creation of powers of attorney documents for personal or health care as a legal document with the aim to express one's directives or appoint someone to make substitute decisions. These documents are now almost always generated at the same time as other, more traditional aspects of estate planning.
The underlying idea holds great promise despite the often flawed execution due to a range of common assumptions made by the parties to a power of attorney document. While people often wish to avoid life-sustaining treatments at the end of life, they rarely understand the realities of the life-sustaining treatments and resuscitation their directives most commonly speak to, the context in which such treatments may be required or their implications for quality of life. Nor do they seek to deepen their knowledge by systematically consulting their physicians or healthcare teams prior to completing these legal documents, even if their lawyer encourages them to do so.
Further, most people appointed as substitute decision-makers or falling under the statutorily defined hierarchy of substitute decision-makers have never discussed such personal wishes and values with those they are designated to represent. As a result, many end up substituting their own values for those of the now incapable person and often consent to or request treatments that are more aggressive than the person actually wanted to undergo—especially as the end of life nears. Adding to these issues, decisions with respect to life support and resuscitation often need to be made quickly, which only adds to the tension and stress experienced by SDMs and healthcare teams.
These problems, if unaddressed, are only going to cause increasing challenges in medical and legal practice: as people live longer; as families become smaller; as friendships fade or evolve; as more people choose to stay single and not have children, more people may find themselves alone and may, therefore, seek to express their wishes and values through written advance directives rather than solely appointing a substitute decision-maker. However, the text and content of advance directives are often ambiguous, do not speak to the situation, and are frequently overly standardized in legal practice in ways that prohibit the expression of unique personal wishes and instead promote conformity. While the actual wording and systematic inclusion of “no heroic” clauses in power of attorney documents has not been altered for years, such clauses as currently written are not particularly helpful in clinical practice. For advance directives to speak clearly, truly respect autonomy and provide meaningful guidance, the text of legal documents must improve—the time for them to do so is now.
This series therefore aims to set out an intensivist's perspectives on the top ten ways estate lawyers can improve the content and scope of advance directives, the wording of any “standardized” no heroics clauses, the process to ensure these wishes and values are respected and, as a result, improve the advice they provide to their clients and the quality of end of care they ultimately receive.
The author wishes to encourage and engage in discussion regarding the directives she proposes here. Please take a moment to express your thoughts and critical commentary in the comments section below.