Beyond directives: Advance care plans must consider patient’s story

Planning for end-of-life medical treatment has received national attention as a “hot topic” recently. The Institute of Medicine (IOM) called for a restructuring of the national healthcare system to encourage doctors to have end-of-life planning conversations with their patients. In January 2016, Medicare also started reimbursing physicians for providing guidance about this type of planning.

End-of-life planning for medical treatment is more commonly known as advance care planning. Advance care planning helps clarify what medical treatment patients would and would not want at the end-of-life. Further, advance care planning helps patients talk about which personal values, like dignity and independence, are most important.

Much of the attention that advance care planning receives is focused on the importance of completing advance directives, which are legal documents that indicate the individual’s preferences for medical treatment at the end-of-life or designate an individual to make medical decisions on behalf of the patient if he or she is unable to do so.

Given that 70 percent of patients will be unable to make medical decisions for themselves during the final days of their lives, this kind of preparation is undeniably important.

Yet despite recognizing the importance of planning for the end-of-life, most people do not actually engage in advance care planning. A recent study concluded that about 39 percent of adults have completed an advance directive, which is a remarkably low number.

A few reasons why people may not complete directives are:

• Not wanting to think about and discuss death
• Preferences for treatment may change over time
• Assuming that their loved ones would already know their preferences for medical treatment
• Worrying that physicians will not give them medical treatment they may prefer, such as cardiopulmonary resuscitation

While all are reasonable concerns, another reason may also be the tools that currently exist, like advance directives, fall short of capturing some essential information: a person’s story. That is, what if the tools do not ask the right questions to help make advance care planning more about the person rather than preferences?

For example, one issue with advance directives is that they are difficult to interpret and apply to real-life conditions. A directive cannot describe a person’s day-to-day life or the activities that make life meaningful for that person. Essentially, a directive cannot give a complete picture of individual.

While government agencies and professional organizations endorse advance care planning, guidance about how to have these types of conversations is lacking. Tools like the Conversation Project helps people talk about end-of-life decisions beyond the directives. They help patients craft advance care plans that clarify preferences by asking about values.

For example, comprehensive advance care planning tools may ask, “Is it important for you to perform daily life activities independently?” or “What would you think about your quality of life if you were unable to talk or interact meaningfully with your loved ones?” These types of questions elicit values and meaning, rather than a preference for a future medical decision.

Everyone has a story, and much like any story, our stories have a beginning, a middle, and an end. Advance care planning helps patients author the end of their story by discussing values and preferences that can help guide future medical decision-making. In advance care planning, we should move beyond the directives to explore who the patient is as a person.

-By Adam M. Pena, M.A., instructor in the Center for Medical Ethics and Health Policy at Baylor College of Medicine