67% of Americans don't have one
A document to create before you die—that has nothing to do with money—and could save your family from unnecessary conflict
There is something cosmically absurd about the world feeling like it’s genuinely unraveling, yet the IRS still needs its money by April 15th.
But as Benjamin Franklin famously said, “Nothing is certain except death and taxes.” And, he’s not wrong. However, I’d add a third thing to that list: Nothing is certain except death, taxes, and the human tendency to avoid dealing with both of them until absolutely forced to.
After Tax Day comes National Healthcare Decisions Day
Every year, the day after Tax Day—April 16th—is National Healthcare Decisions Day (NHDD). According to the Conversation Project, the day “exists to inspire, educate, and empower the public and providers about the importance of advance care planning.”
The irony of NHDD falling right after April 15th is not lost on me. One day is a deadline the government forces on you, with penalties for ignoring it. The other is an awareness day—no one is making you do anything. There is no fine or enforcement if you don’t have an advance directive, just great potential for significant emotional and physical consequences.
An advance directive provides instructions on what to do if you experience a life-threatening situation and are incapacitated. Without one, you may leave your next of kin to make impossible decisions, when that’s the last thing they need at that moment.
If you don’t have an advance directive (or are just learning about them), you’re not alone. Studies show that fewer than a third of American adults have documented their healthcare wishes—even though the vast majority say they think it’s important. That gap, between knowing something matters and actually doing something about it, is exactly where advance directives go to die (pun intended), but also where I hope to help you.
So let’s talk about what they actually are, why the current system needs updating, and what you can do about it.
What is an advance directive?
An advance directive is a legal document that outlines your healthcare wishes in case you can’t speak for yourself. It has two parts:
A living will spells out the specific treatments you do or don’t want: resuscitation, ventilators, feeding tubes, and so on. It’s the document that answers the question: What do you want?
A medical power of attorney (also called a healthcare proxy or agent) names a specific person to make decisions on your behalf if you’re incapacitated. It answers the question: Who speaks for you?
Together, these documents are the difference between your wishes being honored and your family standing in a hospital hallway, grief-stricken, fighting over what you “would have wanted” or what they ultimately want for you.
You may also hear the term POLST (Physician Orders for Life-Sustaining Treatment) when discussing advance care planning. Though depending on your state, it might be called MOLST, COLST, POST, or MOST—different names, same idea. A POLST is technically a type of advance directive, but it’s not the same as a living will. It’s a binding medical order, signed by you and your doctor, specifically designed for people who are already seriously ill, have been diagnosed with a terminal illness, or are medically frail. It tells emergency responders and care teams exactly what to do, or not do, in a crisis, and they are legally required to follow it. If you’re generally healthy, you don’t need one. But if you or someone you love is living with a serious or life-limiting illness, it’s one of the most important documents you can have. Talk to your doctor about whether it’s right for your situation.
Why you should have an advance directive
If you watched The Pitt, the HBO medical drama that won five Emmy awards for its first season, then you’ve seen them highlight the importance of advance directives in guiding end-of-life care, while emphasizing the ethical complexities when family members attempt to override them. The show portrays advance directives as they function in emergency medicine: sometimes honored, overridden, or contested. Even with an advance directive in place, there can be conflict between the patient’s documented wishes and their family’s emotional decision-making. Additionally, doctors still play a role in calling the shots, and will often default to “do everything to save” a patient. The point isn’t that advance directives are foolproof—they’re not. But without one, you have no say at all. With one, you at least have a chance that the people making decisions will know what you want.
Specifically, in Season 1, Episode 2: “8:00 A.M.”, doctors navigate a difficult ethical dilemma regarding a patient who has an advance directive refusing intubation and CPR, but his adult children, both holding medical power of attorney, disagree and override his wishes, forcing him to be intubated.
In a recent Hello, Mortal post: 3 types of wills you should know about before you die, we mentioned the Terri Schiavo case as one of the most well-known versions of this story. A woman was in a persistent vegetative state for 15 years, while her husband and parents were locked in a legal battle over whether to remove her feeding tube. It went all the way to the U.S. Supreme Court because her wishes were never clearly documented, and the people who loved her spent years in court instead of being able to grieve in peace.
While that case is extreme, the dynamic behind it, the people who love the person, unable to agree on what that person would have wanted, happens in less publicized ways every single day.
The system is broken
Dr. Ira Byock, one of the leading voices in palliative care and a major source of inspiration for the work we do, said he realized years ago that the way Americans approach advance care planning is flawed.
“It is based in protecting us from things we fear,” he said, noting that most advance directive forms are designed by attorneys and contractual in nature—listing treatments and circumstances we think we would want or want to avoid.
In my experience—helping clients and creating my own advance directive—I’ve found existing templates to be cold, overly clinical, and overwhelming. They typically ask you to think through endless hypothetical scenarios in complex legal and medical language, at a moment when most people are already anxious just thinking about mortality. So people never start, or they start, get overwhelmed, and stop. Or they complete them once and never look at them again—filing them somewhere no one will find them.
Dr. Byock taught me that it all boils down to trust: “most people want future decisions about their care to be made by people they trust and rooted in love. That is covenantal.”
At the end of the day, you must trust the person you name as your medical power of attorney to make a decision that aligns with your values and honors your wishes. Even when you have an advance directive, and it’s accessible, it doesn’t always get followed. In a crisis, a medical professional may never be made aware of your wishes. The rules also vary by state—what’s legally binding in California may not be in Texas, which adds another layer of confusion for families who live in different places than their loved ones.
Who speaks for you—and can they handle it?
Your medical power of attorney (MPA) is the person who will make decisions on your behalf if you can't. Choosing your MPA is one of the most important decisions you’ll make. Most people default to the obvious answer: spouse, oldest child, closest family member, but that’s not always the best decision.
Being someone’s medical power of attorney is one of the hardest things a human being can be asked to do—if the time comes. We joke about “pulling the plug”—it’s become cultural shorthand for something unbearable. But ask anyone who has actually been in that room, holding that responsibility, and they’ll tell you the weight of it doesn’t leave you. The stress comes from not knowing whether you made the right choice or feeling like your decision is why that person is dead. Documenting your wishes is an act of mercy for the person you’re asking to carry that weight.
When the stakes are high and the pressure is overwhelming, sometimes the person who loves you most is not who can make a clear-headed decision on your behalf. Whoever you choose, the most important thing is that you’ve had a real conversation with them (not just handed them a document)—and yourself—about your values and your fears, starting with contemplating what a good death means to you.
And here’s something most people don’t know: if you haven’t named anyone, the state decides for you. Most states have default surrogate laws that kick in when no advance directive exists—a legal hierarchy that determines who speaks for you. The exact order depends on your state, but it typically goes something like this: your spouse first, then your adult children, then a parent, then a sibling. That might sound fine, but consider what it actually means: If you’re estranged from your spouse but never divorced, they’re first in line. If you have three adult children who don’t agree, they may all be required to decide together and they may not be able to reach a consensus. The person who actually knows what you’d want—your best friend, your partner of ten years you never married, the sibling you’re closest to—may have no legal standing at all.
How to create an advance directive
You don’t need a lawyer (though it never hurts to consult one if you can), and you don’t need to spend much money to get this done. First, talk to your doctor. Second, research services to help you create an advance directive.
Inspired by Dr. Byock’s advance care planning work for the Institute for Human Caring and the book Ethical Wills: Putting Your Values on Paper by Barry Baines, we created our own guided form at Hello, Mortal. It walks you through your wishes in plain language, with no overwhelming hypotheticals, and it provides a place to capture not just your medical wishes but what actually matters to you at the end of life. Our digital platform makes it easier to store, share, and update it as your life changes, because your wishes at 35 may not be the same at 65 or 90, and your document should reflect who you actually are right now.
We’re launching our beta soon. If creating an advance directive is something you’ve been meaning to do, or you need to update your existing one, joining the waitlist is your next step and a great one to take today.
If you need something immediately, there are other options available, including: Caring Info, Five Wishes, MyDirectives, and PREPARE for Your Care.
One more thing nobody mentions: once you’ve completed your advance directive, don’t file it in a drawer and forget about it. Give a copy to your doctor, your MPA, and anyone else who might need it. If you’re admitted to a hospital, bring it with you—medical staff won’t always ask, so you or someone you trust may need to advocate for it.
And a few more resources if you’re interested…
Watch: The Pitt for how it portrays advance directives and other situations in emergency medicine (including the role of a death doula!).
Read: Dr. Ira Byock’s Because I’m a Dad; the why behind completing his advance directive
Listen: To this podcast by JAMA Clinical Reviews on advance directives. One of the podcasters, a doctor, described filling hers out before having a baby and making the case that anyone entering an operating room should be required to do the same—it’s a compelling idea.
The world is chaotic—life continues anyway
It’s an incredibly weird time to be alive.
In between news about mysterious meteors, missing persons, and impending nuclear war, the dishwasher needs to be unloaded, taxes are due, kids need to be fed, and dogs need to be walked. Still, people are falling in love, getting married, having babies, and celebrating birthdays. The mundane and the meaningful continue side by side, regardless of whatever new disaster or discovery unfolds next.
And you—and everyone you know—will die one day. That’s not a reason for dread, but rather a reason to live your life intentionally, using your time, energy, resources, and finances in ways that align with your values.
The fact that we will all die may seem morbid to some, but I’m a firm believer that it is the most clarifying truth available to us right now. Because, while we can’t control a lot of what’s happening in the world, we can control whether the people we love are left scrambling in chaos when we die, or whether we provide a little something to guide them and hold onto.
Paying your taxes is not an act of love, but documenting your advance directive is one of the most loving things you can do for the people who might have to make incredibly difficult decisions on your behalf.
Have you filled out an advance directive or tried to and abandoned it halfway through a confusing form? Maybe you were the person left to make decisions without an advance directive…
No matter the circumstance, I want to hear about it. Your experience might be exactly what someone else needs to read.
— Maura
I found out how inadequate those form-letter advanced directives are when my husband became ill and I had to make difficult medical decisions on his behalf. His situation didn’t fit into any of the neat categories on the form, and when I and his sister made the decision to discontinue aggressive interventions, the medical staff questioned us and insinuated that we were shortening his life instead of trying to minimize his suffering. Because of that experience, I wrote a three page attachment to my directive laying out my wishes and hopefully giving guidance to whomever has to make those decisions for me when the time comes.
Excellent message. We all need to plan while we can. Aside from leaving financial security for loved ones, leaving them with clear end-of-life guidance is the ultimate gift of love.