"My family knows what I want" is not a plan

It's one of the most common things I hear when I bring up end-of-life planning with patients and their families. A reassuring wave of the hand. A small smile. "Oh, my family knows what I want."

I wish that were enough. After twenty years in the emergency department — and after living through this myself — I can tell you that it almost never is.

What actually happens in the moment

Here's the scene I've witnessed more times than I can count. A patient arrives in crisis — a stroke, a cardiac arrest, a severe accident. They can't speak for themselves. The family is gathered in a small consultation room, faces pale, hands shaking. I'm standing there explaining what's happening and what decisions need to be made right now.

And someone says, "I think she said once that she wouldn't want this."

And someone else says, "No — she told me she'd want everything done."

And then everyone looks at each other. And nobody is sure.

This isn't because the family doesn't love the patient. It's because memory is imperfect, conversations get reinterpreted, and people genuinely hear different things in the same sentence. "I don't want to be kept alive on machines" means something very different depending on whether you're the optimistic son or the pragmatic daughter. Without a document, it becomes a question of whose memory wins.

Why "knowing what you want" isn't enough

Three things happen when there is no written plan and no legally designated decision-maker:

The family disagrees. Even the most loving families often hold different interpretations of vague conversations. Siblings who have managed to agree on everything for decades can fracture over a ventilator decision. I have seen it destroy relationships.

The legal default takes over — and the loudest voice often wins. In Massachusetts, without a health care proxy, there is no single family member with automatic legal authority. Hospitals must work through next-of-kin hierarchies, and in some cases, decisions may escalate to legal proceedings. But here's what I've watched happen in practice, more times than I want to count: when a family is gathered in crisis and there's no document and no designated decision-maker, the family member with the strongest personality often becomes the de facto voice. Not the one who knew the patient best. Not the one whose values most aligned with the patient. The loudest. And once they've spoken, the rest of the family rarely pushes back in the moment. Without documentation, your care can end up reflecting your most assertive relative's beliefs — not your own.

The default in medicine is to do everything. When your wishes are not clearly documented and no proxy can advocate for you, the medical team's default — appropriately — is to provide all possible treatment. For some people, that matches what they would want. For many others, it doesn’t.

What it looks like when there’s a plan

I know what the alternative looks like, because I've lived it.

My husband Evan was diagnosed with a brain tumor several years ago. We were both emergency medicine physicians. We both knew immediately what his diagnosis meant. And what he did from that moment forward changed how I think about all of this.

Evan didn't leave anyone guessing. He decided what he wanted. He told me, clearly and specifically. He documented it. He made his choices about treatment in the calm of ordinary days, not in the chaos of a hospital room.

Every time a new option was offered to him, he asked the same two questions:

How will this affect my ability to be a father? How will this affect my ability to be a husband?

Those two questions became his compass. They told the rest of us — me, his children, his doctors — exactly how to advocate for him when the time came. Nobody had to guess. Nobody had to argue. Nobody was paralyzed in a hallway debating what he would have wanted, because he had already told us.

That is what a plan looks like. That is what a real plan does.

What a real plan looks like in Massachusetts

A real plan has three parts: the document, the designated person, and the conversation. You need all three.

In Massachusetts, the foundational document is the health care proxy — the form that legally designates the person who can speak for you. Alongside it, a personal directive (also called an advance directive) describes your values and the kinds of care you would or would not want. It guides the decisions the person will make. Together, these are the documents almost every adult should have in place.

For people facing serious illness, advanced age, or anyone who already knows clearly what they want at end of life, there is a third document: the MOLST form (Medical Orders for Life-Sustaining Treatment). Unlike the personal directive, the MOLST is not a wish — it is a medical order, signed by you and your physician. It tells the medical team exactly what to do and what not to do regarding CPR, intubation, artificial nutrition, and other emergency and end-of-life care options. And critically, it travels with you across care settings, so the same orders that apply at home apply in the ambulance, the ER, and the hospital.

Your family loving you is not a plan. Your family hoping to do the right thing is not a plan. A plan is written, legal, and specific.

How Caregiving Pathways can help

At Caregiving Pathways, my role is to help you understand what options you actually have at the end of life — the decisions you can make, the choices in front of you, and the real consequences of each of those choices. I help clients think through whether a health care proxy and personal directive are the right foundation for them, or whether their situation calls for a MOLST as well. And I sit with clients and often with their healthcare proxies together, because the document is only as strong as the conversation behind it.

If you've been meaning to get this in place but haven't found the right entry point, reach out. This is the exact conversation I'm here to have.