‘It can spare people so much pain’: what is an advance directive and should you get one?
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My parents died three years and two ICU rooms apart. Both were still in their 60s. Neither had a finished will, much less an advance directive – a set of care instructions someone prepares in case they become incapacitated – that could have guided my sister and me. In our early 30s, shell shocked by brutal surprise, we made decisions that determined the course of their final hours.
Today, we trust that we honored their wishes, but doubt and distress linger.
Our experience, though devastating, is hardly unique in the US. According to a 2017 study, fewer than one in three adults have a completed advance directive document, such as a living will or do-not-resuscitate (DNR) order. In a 2018 national survey, only a third of participants reported talking with loved ones about their end-of-life (EOL) desires, which often evolve over time.
“We’re so scared of death, yet it is the common factor of every human on this planet,” says Melanie Wilson, death educator, grief guide, and founder of Life and Soul, an EOL planning and project management firm.
Experts say a reframe is in order.
Discussing “what we want done with our bodies in our deaths is really an act of love, not just for ourselves, but the people that support us”, says 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.”
Here’s what you need to know about advance directives in the US.
What is an advance directive?
An advance directive is a set of instructions that you prepare for situations in which you can’t speak for yourself, such as in a medical emergency. A lawyer may be involved in the process, and it is often part of estate planning.
Unlike most other estate documents, the directive is generally used when someone is still alive – for instance, if you’re under anesthesia and something unexpected happens.
An advance directive includes several documents. One is a healthcare proxy form, which designates someone to make care decisions when you’re unable. Another is a living will, which offers your proxy – also sometimes called a medical agent or power of attorney – guidance on how best to honor your 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 and hospice and organ donation, says Sandra D Glazier, an estate attorney in Michigan.
Do I need an advance directive?
If you’re an adult (ie, 18 or older) with the capacity to make medical decisions for yourself, you can complete an advance directive. It’s a good idea to do so because, as Glazier notes, “catastrophes happen to people of all ages”.
These instruments can be especially helpful for solo agers who don’t have a default decision maker like a spouse or child, or people who are estranged from their legal next of kin.
An individual who is concerned that relatives would not carry out their wishes might also benefit, Chavez says. Someone in this position who’s trans, for example, might select a member of their chosen family to act as healthcare proxy, and indicate the name, pronouns, dress and grooming they would want used in a healthcare setting.
How do I know what to put in an advance directive?
Start with your values, especially your stance on quality and quantity of life, experts advise.
Glazier has clients who believe, for example, “that life is of utmost importance and you should do everything possible to preserve it”.
Others may prioritize quality of life. In those cases, Chavez recommends thinking about what makes living worthwhile. So, for example, is it checking practical boxes, like having certain emotional, intellectual and physical capabilities? Or is it more experiential, like the ability to eat chocolate ice cream and watch football?
Some experts recommend starting broad, then adding more specific instructions (and documents) if circumstances change.
For instance, a young, healthy person will likely want to take as many lifesaving measures as possible in an emergency and can indicate this in a living will, says Beau M Romero, a nurse care manager and owner of HealthSense, a senior care management firm in New York City.
In contrast, someone with a terminal illness may work with their clinical team to complete detailed forms covering when to take or forgo life-extending measures. For example, many states have a version of a Physician/Provider Order for Life-Sustaining Treatment (POLST) or Medical Order for Life-Sustaining Treatment (MOLST), which “outlines some very clear conditions or circumstances that a client may find themselves in, and it asks them what they would want”, Romero explains.
How do I pick a healthcare proxy?
Find a proxy who “can and will honor your wishes”, says Kate DeBartolo, senior director of The Conversation Project, an advance care planning initiative of the Institute for Health Care Improvement.
Your spouse or oldest child might be the default choice. But if their values differ to yours, acting under pressure isn’t their strength, or they’d rather just stay by your side, another person might be more suitable.
“Somebody who’s a little outside of that circle – a friend, a neighbor, someone from your church” might be better able to ask the tough questions and “follow through with your wishes”, Chavez says.
Make sure whoever you choose is aware, willing and fit to serve, experts say.
One or two backup proxies can also be useful. Be specific about when they should take over, Glazier advises. If, for example, your first proxy is overseas when you’re incapacitated, do you want your second proxy to step up? Should they step down or stay the course if the first proxy becomes available?
Finally, steer clear of co-proxies, Glazier says. “If they are fighting, the doctors are going to say, ‘I don’t know who I’m supposed to listen to,’” she explains.
Consider who might need your medical records (eg via a Hipaa release) to make informed decisions, Glazier says. A release terminates on the holder’s death, so she typically recommends building in an extension that considers your state’s statute of limitation for bringing an action if medical malpractice is suspected. In Michigan, for example, it’s two years.
Several states require a notary or a witness or two, but costs and barriers to entry are otherwise minimal, Chavez says.
Many experts recommend consulting a lawyer and/or your medical team, especially if many instruments are involved or you are doing broader estate planning.
Once your directive is written, share it with proxies and other close loved ones. “I have it on QR codes in my wallet,” says Dan Morhaim, an internal and emergency medicine physician and author of Preparing for a Better End. “It’s in the glove compartment of my car. My kids have it. My wife has it.”
How often should I review my directive?
Often, an advance directive is completed during estate planning, then tucked away, DeBartolo says. Experts say to instead treat it as a living set of documents that you revisit regularly to ensure it reflects your evolving values and reality.
Glazier advises clients to review estate documentation every presidential election year. The Conversation Project hosts an annual National Healthcare Decisions Day on 16 April, the day after tax day, in honor of Benjamin Franklin’s iconic quote: “Nothing is certain except death and taxes.”
During the review, consider major changes in life circumstances, such as the birth of a child or a divorce, and confirm that your nominated proxies are appropriate. After review, sign and date it, says Glazier. This doesn’t make the document more binding, but confirms when you last approved it.
What are some hurdles to honoring advance directives?
There is no secure national database for end-of-life planning documents. This results in “the common problem of loved ones and health care providers being unable to locate critical end-of-life wishes when they’re needed most”, according to the Order’s website.
Last year, the bipartisan Legacy Act was introduced, proposing to create such a database.
At the state level, patient autonomy advocates are challenging laws that invalidate the advance directives of pregnant people. These “pregnancy exclusions”, which exist in 30 states, have led to pregnant women being kept on life-sustaining medical treatment against their stated wishes – sometimes for months.
“The state gets to decide,” says Jess Pezley, senior staff attorney with the advocacy non-profit Compassion & Choices.
Due to Almerico v Denny, a case the organization helped bring in 2018, Idaho’s pregnancy exclusion “was found to be unconstitutional under the federal constitution”, Pezley says. She’s now seeking changes to state constitutions in Michigan and Kansas, whose exclusions are among the most restrictive in the country.
Regardless, people who are or may become pregnant should still codify their wishes in an advance directive, Pezley says.
How do I encourage someone to make an advance directive?
The Conversation Project offers guidance for a range of scenarios and attitudes.
Pop culture and current events “can be a really good and very non-threatening way” in, Chavez says. In a 2025 survey of HBO Max viewers, 39% of people who watched an EOL storyline on The Pitt – a show celebrated for its realistic portrayal of ER medicine – said they were more likely to seek out related planning information.
Some people opt for a bolder approach, says DeBartolo, recalling a woman who withheld dessert at Thanksgiving one year, saying “no pumpkin pie ‘til you tell me how you want to die”.
When talking with a parent or grandparent, it can be helpful to reference your self-interest. Nobody wants to be a bother, Chavez says. “I suggest flipping the script here and letting them know: ‘This is going to help me … feel as though I’m honoring you.’”
Such conversations can make way for a more death-literate future.
Delaney Rebernik is an independent journalist and editor covering death and digital life
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