This article is for educational purposes only and does not constitute medical, legal, or financial advice. Every family situation is different, and you should consult with appropriate professionals about your specific circumstances.

Advance Directives: The Documents That Speak When They Can't

An advance directive is an umbrella term for documents that tell healthcare providers and family members what your parent wants if they can't speak for themselves. It's the legal framework that lets your parent's voice be heard even if they're unconscious, or confused, or unable to communicate. It's the thing that stands between your parent's wishes and a hospital making decisions based on medical judgment alone.

The term "advance directive" means different things in different states. Sometimes it refers to anything that directs what happens if your parent becomes incapacitated. Sometimes it specifically means healthcare directives. But the core idea is the same everywhere: your parent is planning ahead for a time when they might not be able to decide things themselves.

This article walks you through what an advance directive is, why your parent needs one, and what's involved in putting it together.

Understanding The Basics

An advance directive is a collection of documents that work together to make sure your parent is cared for according to their wishes if they lose the ability to make decisions.

It usually includes a healthcare power of attorney, which gives someone the authority to make medical decisions on your parent's behalf. It includes a living will, where your parent states what they want at the end of life. It might include a HIPAA authorization, which gives someone permission to access your parent's medical records. In some states, it includes a document about organ donation. Some states have a specific form that combines all of these into one document called an advance directive. Other states have separate documents that together constitute an advance directive.

The term can be confusing because different states use it differently. When you talk to your parent's lawyer about an advance directive, the lawyer will explain what documents are included and what each one does.

What they all have in common is that they're about decision-making if your parent can't decide for themselves. They're not about what happens to property or money. That's covered by a financial power of attorney or a will. Advance directives are specifically about healthcare and medical decisions.

Why This Matters For Your Parent

If your parent has an advance directive, they get to decide what happens to them even if they can't communicate. If they don't have one, other people get to decide. Those other people might be doctors who don't know your parent's values. Or they might be family members who have to guess what your parent would have wanted. Or they might be a court-appointed guardian who makes decisions based on what a judge thinks is best, not what your parent would have chosen.

With an advance directive, your parent is in control. They're telling everyone what matters to them. They're telling you what they want you to do if something happens. They're making sure their voice is heard.

This is especially important if your parent is facing cognitive decline. If your parent has dementia or Alzheimer's disease, they might lose the ability to make medical decisions while they're still physically healthy. An advance directive lets them plan ahead and tell everyone what they want now, while they can still communicate clearly.

It's also important if your parent has strong values about medical care. Maybe your parent is deeply opposed to certain treatments on religious grounds. Maybe your parent has very specific ideas about what quality of life means to them. An advance directive is how they make sure those values are respected.

What Questions To Ask Your Parent

Before you put together an advance directive, you need to understand what your parent wants. This is where the conversation comes in.

Ask your parent about their fears. Are they afraid of pain? Of being dependent? Of losing their mind? Different fears lead to different decisions about medical care. Someone who's afraid of prolonged suffering might want comfort care emphasized over aggressive treatment. Someone who's afraid of losing independence might want aggressive rehabilitation to try to recover function.

Ask your parent about their values. What does a good life look like to them? What's important? Is it being with family? Is it being able to read or watch movies? Is it being able to communicate? Is it religious practice? The answer to these questions guides what kinds of medical care make sense.

Ask your parent about specific medical scenarios. If they had a severe stroke and couldn't walk or talk or remember anyone, would they want aggressive rehabilitation to try to recover, or would they want comfort care? If they had advanced dementia and developed an infection, would they want antibiotics and hospitalization, or would they want to avoid aggressive treatment? If their heart stopped, would they want CPR? These questions are hard, but they're important.

Ask your parent about end-of-life care. If your parent was dying and there was no hope of recovery, what would they want? Would they want pain medication even if it might hasten death? Would they want to go home or stay in a hospital? Would they want family there? Would they want life support?

Ask your parent about organ donation. Some people want to donate organs or tissues if it will help someone else. Some people don't. Your parent's advance directive should include their wishes about this.

Ask your parent who they trust to make decisions if they can't. Is it you? Is it a spouse? Is it multiple people? Your parent's advance directive should name whoever they want as their healthcare decision-maker.

Not every advance directive includes answers to all of these questions. Your parent might feel comfortable with some decisions and not others. Your parent might be clear about some things and uncertain about others. That's okay. The advance directive records what your parent is sure about and leaves room for whoever is making decisions to use judgment about things your parent didn't specifically address.

What Documentation You'll Need

Different states require different documents. Some states have an official form that serves as the state's recommended advance directive. Some states don't have an official form and just require whatever documents are legally sufficient.

You'll need a healthcare power of attorney. This document names someone to make medical decisions and states what kinds of authority they have.

You'll need a living will or statement about end-of-life care. This tells doctors and family what your parent wants if they're dying.

You might need a HIPAA authorization. This gives someone permission to access your parent's medical information. Without this, doctors won't talk to you about your parent's condition or medical care. This is important if your parent wants you to be involved in medical decisions.

Your state might have a specific form or format that's required. Your lawyer will know this and will prepare the documents accordingly.

Your parent might need to see a doctor to document that they had capacity when they signed the documents. This is especially important if your parent is older or if there's any question about cognitive function. A doctor can write a letter saying your parent was alert, oriented, and understood the documents being signed.

Taking Next Steps

If your parent doesn't have an advance directive, the time to get one is now. Here's how to proceed.

First, have the conversation with your parent about what they want. Ask the questions. Understand their values. Write down what they say. You don't need a formal document yet. You just need to know what your parent wants.

Second, find a lawyer who does estate planning or elder law. Many lawyers can handle advance directives. If you can't find a lawyer through your network, you can search online for "elder law attorney" in your area or ask your parent's doctor for a referral.

Third, meet with the lawyer. Bring what your parent said they want. The lawyer will draft documents that reflect your parent's wishes. The lawyer will explain the documents and make sure your parent understands what they're signing.

Fourth, have your parent sign the documents. This usually happens at the lawyer's office. The lawyer will make sure the documents are signed and notarized according to your state's requirements.

Fifth, make sure you have copies. Get multiple copies of the signed documents. Your parent might want to keep the original and give you a copy. Your parent might want to give copies to their doctors. Some people keep them in a safe deposit box.

The cost is usually a few hundred dollars. Insurance doesn't cover it, but it's worth the money. It costs less than guardianship proceedings, and it does what guardianship does but respects your parent's wishes and autonomy.

If Your Parent Is Declining

If your parent is already showing signs of cognitive decline, getting an advance directive becomes more urgent. The sooner it's done, the less question there can be about capacity later. If your parent is declining significantly, see a doctor first. Get a professional assessment of whether your parent has capacity to execute the documents. Get documentation of that assessment. This protects the advance directive if it's ever challenged later.

If your parent is already significantly impaired, an advance directive might not be possible. In that case, you'd need to pursue guardianship to get the authority to make decisions.

The Bigger Picture

An advance directive is one piece of your parent's legal and financial plan. It works with a financial power of attorney, which gives someone authority to manage money and property. It works with a will, which determines what happens to property after death. For some people, it works with a living trust, which is a separate legal structure that can handle property and avoid probate.

Your parent doesn't need all of these. But most older adults should have at least a financial power of attorney and an advance directive. These two documents together give you the authority and the guidance to manage both your parent's medical care and their finances if your parent becomes unable to do so.

The Real Reason To Do This

People put off advance directives for the same reason they put off power of attorney documents. It's uncomfortable. It requires thinking about bad scenarios. It requires admitting that your parent is mortal and that someday they might not be able to speak for themselves.

But the alternative is worse. The alternative is a crisis, or a slow decline, or a situation where your parent is being treated in ways that don't match their values because nobody knows what they want. The alternative is confusion and guilt and regret.

An advance directive is how your parent stays in control even if they can't actively control things anymore. It's how they make sure their voice is heard when it matters most. It's one of the kindest things a person can do for the people they love.

How To Help Your Elders is an educational resource. We do not provide medical, legal, or financial advice. The information in this article is general in nature and may not apply to your specific situation. If you are concerned about a loved one's cognitive health or safety, consult with their healthcare provider or contact your local Area Agency on Aging for guidance and support.