End-of-life planning isn't just for the elderly

There is a quiet assumption that runs through almost every conversation about end-of-life planning. The assumption that this is something to think about later. When you're older. When you're sick. When you're closer to the end.

After twenty years in the emergency department, I can tell you that assumption costs families dearly. The patients I've seen who needed advance care planning weren't all elderly. Many of them were in their twenties, thirties, and forties. None of them expected to be there.

And I know this not just from the ED. I know it from my own life.

Who I've actually seen need it

The 24-year-old who came in after a single-car accident on a rainy night. The 38-year-old marathon runner who collapsed from a sudden cardiac event. The 45-year-old mother of three who had a catastrophic stroke at her kitchen table. The 31-year-old whose routine surgery had a rare and devastating complication.

Every one of them had families standing in a consultation room being asked to make decisions nobody had ever planned for. Every one of those families said some version of "we’ve never talked about this."

My own husband, Evan, was diagnosed with a terminal brain tumor in the prime of his life. We were both emergency physicians. Neither of us thought we were anywhere close to needing this kind of plan — and then suddenly we were.

End-of-life planning is not a question of when you'll die. It's a question of what happens if you can't speak for yourself. And that question can apply to anyone, at any age.

Why early matters

There is a powerful, freeing reason to think about this early — and it has nothing to do with morbidity. When you make these decisions in the calm of an ordinary day, you make them clearly. You make them in your own voice, in line with your own values, with time to think and time to talk.

When these decisions get made in a crisis, they get made by exhausted people who are scared and guessing. There is no version of that scenario that produces a better outcome than the one where you decided in advance.

Evan's diagnosis gave him time to think — and he used it. He decided what he wanted from his treatment. He documented his wishes. He talked to me, to our children, to his doctors. He made every decision in his own voice. Many of my patients in the ED do not get that opportunity. The accident happens. The stroke happens. There is no time.

This is why I tell my clients that end-of-life planning is something to talk about early and often. Not as a single, heavy conversation when something goes wrong. As a recurring, low-pressure part of being a thoughtful adult — the same way you might think about retirement planning, or who you'd want to raise your kids if something happened, or what you'd want done with your house. It's just one more thing you've thought about, written down, and shared with the people who matter.

What every adult should have in place

In Massachusetts, the foundation for any adult is the health care proxy — the legally binding document that names someone you trust to make medical decisions for you if you can't. It’s the single most important end-of-life document you can have, regardless of age.

Alongside it, a personal directive describes your values and the kinds of care you would or would not want. It's not legally binding here in Massachusetts, but it gives your proxy and your care team clear written guidance.

For people facing serious illness, advanced age, or anyone who already knows clearly what they want at end of life, there's a third document — the MOLST form — that translates wishes into actual physician-signed medical orders.

For most adults under 50 in good health, the health care proxy and personal directive are the right starting place. They take less than an hour to complete. They cost nothing. And they should be revisited every few years as your life evolves — when you marry or divorce, when you have children, when relationships change. Talking about these things early and often means the documents stay current and the conversations stay alive.

If you're a parent of an adult child

Here’s something many parents don't realize. Once your child turns 18, you no longer have automatic legal authority to make medical decisions for them — even if they live at home, even if they're on your insurance, even if you're paying their tuition. If your 19-year-old college student is in a serious accident and can't communicate, you are not looked to the same way you were when they were 17, because you don’t have the same legal authority.

This is one of the most common reasons I encourage parents to have this conversation with their adult children. Not as a frightening one. As a practical one. Having a health care proxy at 18 should be as routine as registering to vote.

How Caregiving Pathways can help

At Caregiving Pathways, my role is to help people of any age understand the options they have at end of life — the decisions they can make, the choices in front of them, and the real day-to-day consequences of each of those choices. I work with clients in their thirties and clients in their nineties. The conversation looks different. The need is the same.

If you've been meaning to think about this — for yourself, for an adult child, for a parent — reach out. This is the conversation I'm here to have. The earlier and more often we have it, the better it works for everyone.