Advance Directives: Why You Need a Living Will & How to Prepare

Three years and two intensive care unit (ICU) rooms apart, Sarah Chavez’s parents died, both in their 60s, without completed wills or advance directives – a set of care instructions prepared in case of incapacitation. The experience left Chavez and her sister grappling with decisions determining the course of their parents’ final hours, and a lingering sense of doubt.

Their story is far from unique. According to a 2017 study, fewer than one in three adults in the United States have a completed advance directive document, such as a living will or do-not-resuscitate (DNR) order. A 2018 national survey revealed that only a third of participants had discussed their complete-of-life (EOL) desires with loved ones, preferences that often evolve over time.

Experts say a shift in perspective is needed. Discussing end-of-life wishes isn’t dwelling on mortality, but rather an act of love for both oneself and those who will provide support, according to Sarah Chavez, executive director of The Order of the Good Death, a deathcare education and advocacy organization. “Of course, that can’t erase the pain or the grief, but it can spare people so much … unnecessary pain and confusion, and conflict.”

What is an Advance Directive?

An advance directive is a set of instructions prepared for situations where an individual cannot speak for themselves, such as during a medical emergency. It often forms part of estate planning and may involve legal counsel. Unlike most estate documents, an advance directive is generally used while the person is still alive – for example, during anesthesia if an unexpected event occurs.

An advance directive encompasses several documents, including a healthcare proxy form, which designates someone to make care decisions when the individual is unable. It also includes a living will, offering guidance to the proxy on how best to honor the individual’s wishes. Depending on factors such as age, health, values, beliefs, and local laws, a directive may also cover preferences regarding specific lifesaving or sustaining treatments, palliative care, hospice, and organ donation, according to Sandra D Glazier, an estate attorney in Michigan.

Do I Need an Advance Directive?

Any adult (18 or older) with the capacity to make medical decisions can complete an advance directive. Experts note that unforeseen events can happen at any age, making it a prudent step for everyone. These instruments can be particularly helpful for individuals who lack a default decision-maker, such as those who are solo agers or estranged from family.

Individuals concerned that relatives might not respect their wishes may also benefit from creating an advance directive. For example, a transgender individual might select a member of their chosen family to act as a healthcare proxy and specify their preferred name, pronouns, and presentation in a healthcare setting.

How Do I Know What to Put in an Advance Directive?

Experts advise starting by identifying one’s core values, particularly regarding quality and quantity of life. Some individuals prioritize preserving life at all costs, while others prioritize quality of life. In the latter case, considering what makes life worthwhile – emotional, intellectual, or physical capabilities, or experiential aspects like enjoying simple pleasures – is crucial.

Starting with broad preferences and adding more specific instructions as circumstances change is also recommended. A young, healthy person might generally seek all possible lifesaving measures taken, while someone with a terminal illness might function with their clinical team to complete detailed forms outlining preferences for specific treatments. Physician/Provider Orders for Life-Sustaining Treatment (POLST) or Medical Orders for Life-Sustaining Treatment (MOLST) can provide clear guidance in such situations.

How Do I Pick a Healthcare Proxy?

The key is to find someone who “can and will honor your wishes,” according to Kate DeBartolo, senior director of The Conversation Project, an advance care planning initiative. While a spouse or child might be the default choice, it’s essential to consider whether their values align with yours and whether they can handle the pressure of making difficult decisions. Someone outside the immediate family – a friend, neighbor, or member of a faith community – might be better equipped to ask tough questions and follow through with the individual’s wishes.

It’s crucial to ensure the chosen proxy is aware, willing, and able to fulfill the role. Having one or two backup proxies is also advisable, with clear instructions on when they should step in. Experts caution against co-proxies, as disagreements can create confusion for medical professionals.

How Do I Make an Advance Directive?

Each US state provides free advance directive forms online. Resources like The Conversation Project, The Order of the Good Death, the National Alliance for Care at Home, and MyDirectives.com offer guidance on completing these forms. Consulting with a lawyer and/or medical team is recommended, especially for complex situations or broader estate planning.

Once completed, share the directive with proxies and close loved ones. Some individuals carry it with them, such as on a QR code in their wallet or in their car.

How Often Should I Review My Directive?

Experts recommend treating an advance directive as a living document, reviewing it regularly to ensure it reflects evolving values and circumstances. Reviewing estate documentation every presidential election year is one suggestion. The Conversation Project hosts an annual National Healthcare Decisions Day on April 16th, encouraging individuals to consider their end-of-life wishes.

During review, consider major life changes, such as the birth of a child or a divorce, and confirm that nominated proxies remain appropriate. Signing and dating the revised document confirms the date of the latest approval.

What are Some Hurdles to Honoring Advance Directives?

The lack of a secure national database for end-of-life planning documents often leads to difficulties locating critical wishes when needed. The bipartisan Legacy Act, introduced last year, proposes creating such a database.

State laws that invalidate the advance directives of pregnant people also pose a challenge. These “pregnancy exclusions” have resulted in pregnant women being kept on life-sustaining treatment against their stated wishes. Advocacy groups are challenging these exclusions in several states.

How Do I Encourage Someone to Make an Advance Directive?

The Conversation Project offers guidance for initiating these discussions. Utilizing pop culture and current events, such as storylines in television shows like HBO’s The Pitt, can provide a non-threatening entry point. Framing the conversation as a way to alleviate burden and ensure wishes are honored can also be effective.