Completing an Advance Directive: Benefits, Pitfalls and Recommendations

By Judith Schwarz, PhD

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This article is part of the End of Life Options: Conversations with Judy series — to learn more about the series, click here.

When completing advance directives, what are some common mistakes I should avoid?

Everyone who has wishes for their medical care if they lose decision-making capacity would be well advised to complete an advance directive. Directives go into effect when a person becomes unable to participate in treatment decision making. This may be permanent, such as when someone develops advanced dementia, or may be temporary such as after a severe injury.

There are several types of medical directives, and they are not equally useful in all circumstances. So, let’s discuss the most frequently used directives within the context of their benefits and challenges, and to make some suggestions about how to avoid their “pitfalls.”

There are two broad categories of advance medical directives — documentation of wishes and appointment of a decision-maker. Living wills are one of the most common written directives and many states have their own form. However, in New York, there is no specific government-issued form that must be used, but the NYS government has created an example form that can be modified as needed. Typically, living wills are created with the assistance of a lawyer.

Many folks write in their living wills that life-sustaining interventions should be stopped/withheld if there is no reasonable expectation of recovery. It should be noted that the decision to forgo treatments requires a physician’s subjective judgement about whether an intervention merely prolongs dying and whether there is a reasonable expectation of recovery. Some clinicians maintain there is always hope for recovery, regardless of the patient’s clinical situation. In addition, if the person who completed a written directive ends up in a medical condition not identified in the document, physicians will have no idea what treatment the patient would want if that is their only source of information. In those situations, the default is almost always to continue treating.

By contrast, the New York State Health Care Proxy Form allows the appointment of a health care agent who is legally permitted to make all health care decisions for the person once they become unable to engage in their own health care decision making. This means that the clinicians will be referring to the agent instead of only to a written document. You can appoint a friend, family member, neighbor or another adult to be a health care agent — the important consideration is that you trust this person. The only legal limitation in NY on the agent’s ability to make treatment decisions concerns the use of medically provided nutrition and hydrations. Unlike other interventions, where the agent can infer what you may have wanted if you did not leave explicit directives, the agent must know your wishes about medically provided nutrition and hydration before being permitted to make a decision about its use.

An appointed health care agent can only be effective if the agent KNOWS the patient’s treatment preferences and/or is able to apply their understanding of the patient’s long held values and end of life wishes to the particular clinical situation at hand. The agent brings to the clinical team that understanding and speaks for the patient when decisions must be made. Thus, a completed health proxy form is only as good as the conversation between agent and patient about values and wishes. As the patient faces new clinical challenges and perhaps must cope with increasing physical challenges, their values and wishes may well change over time. The agent must be informed of those changes; there should be a discussion whenever your circumstances and wishes change.

When documenting one’s wishes there are three types of common mistakes that can have serious ramifications. The first mistake is that when folks are writing their wishes they imagine themselves at a time in the future in different circumstances. The problem with imaginative planning is that we do not know when our directives may go into effect (when we will temporarily or permanently lose decision-making capacity) or the circumstances under which this would happen. Therefore, it is important to discuss what your wishes would be if something were to happen TODAY. As your wishes and circumstances change, you should update the document.

The second mistake is focusing on specific details instead of sharing your core values. It is impossible to predict all the different circumstances we may find ourselves in, and therefore your health care agent may need to make decisions for you in clinical situations you didn’t discuss. In these cases, they will need to rely on what they know about you, and what matters most to you. By discussing what matters to you, your health care agent will be well positioned to make decisions that reflect your values.

The third and last mistake I’ll mention when documenting wishes is that often people write their wishes as absolutes — “I would want everything possible done” or “I wouldn’t want any interventions.” While this truly reflects the wishes for some (for example some folks with a terminal illness wouldn’t want any life-sustaining attempts), most of the time one’s wishes are more nuanced. For example, when some folks have told me they would not want any potential life-sustaining interventions, I have asked what they would want if they got COVID and there was potential for recovery. Frequently, after some reflection, they state that they would want a trial period of ventilator use to see if they might recover. In many cases this goes back to the first mistake, with folks picturing themselves at a different point in life and in an imaginary situation. This is also why sharing your values with your health care agent is so important, so the agent can make decisions based on what matters to you.

With regards to the Health Care Proxy Form, the most significant mistake is not carefully considering who would best serve as your health care agent. Health care agents in NYS have a great deal of authority to make treatment decisions, but are expected to decide as the patient would. The only way to overturn an agent’s role as decision maker when they do not seem to be functioning in the patient’s best interests, is to go to court — a laborious and expensive prospect. Thus, the agent must be carefully chosen. It should be someone who you trust to honor your values and wishes in what may be a challenging and emotionally fraught situation. This may mean that the person you are closest to is not the best person to fill this role. Having honest conversations with folks you are considering as a health care agent can help you identify the best person for the role and ensure they are comfortable serving in this capacity.

Advance directives are one of the most important tools available to ensure our medical care is informed by our wishes and values. Therefore, it is important to complete them thoughtfully. When completing directives, please remember to carefully consider who would be your best health care agent, to focus on what matters to you today (not in the imaginary future), and don’t write in absolutes (unless you truly mean it). By being mindful of these common mistakes, you will be well-positioned to complete clear and effective advance directives.

Judith Schwarz is a PhD prepared nurse, and has provided End of Life Counseling for 20 years for adults with living incurable/progressive or terminal illnesses. As the Clinical Director of End of Life Choices New York (EOLCNY), she answers New Yorkers’ questions about a range of end of life issues.

To learn more about EOLCNY’s support program, click here. To connect with Judy, please email judith@eolcny.org.

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EOLCNY provides advocacy, education, counseling, and support to expand end of life options and improve care for New Yorkers.