Advance Directives: What They Are and How to Get Started

An advance directive is a set of forms you fill out while you are well. The forms say what kind of care you want if you get too sick to speak for yourself. They also name the person who can speak for you. This guide explains the two main forms, why they help, and the steps to get yours done.

This guide is part of our Aging at Home hub. Its sister guides cover living will versus medical power of attorney, choosing a health care agent and discussing your wishes, and DNR orders: what they address and how they differ from advance directives. A related guide is updating, storing, and sharing your care planning documents.

Key takeaways

• An advance directive has two main parts: a living will, which states the care you do or do not want, and a health care power of attorney, which names the person who can decide for you.
• In a large review of studies, 45.6 percent of adults age 65 and over had done some kind of advance directive. That means more than half had not.
• The forms are set by state law. Free state forms exist, and most people do not need a lawyer to fill one out.
• A form helps only if people can find it. Give copies to your agent, your doctor, and your family, and keep one where it can be found fast.
• Medicare Part B pays for a talk with your doctor about advance care planning. The talk can be part of your yearly wellness visit.

The two main forms

A living will states your wishes for care near the end of life. It can say whether you want machines to help you breathe, tubes to feed you, or care that aims only at comfort. It speaks only when you cannot speak for yourself and meet the terms the form sets out.

A health care power of attorney names your agent. Some states call this person a proxy, a surrogate, or a health care representative. Your agent talks with your care team and makes choices that match your wishes. Pick a person who knows you well, who can stay calm in a hard talk, and who will say what you want, not what they want.

Many states join both parts in one form. Some states use other names for the same forms. The point stays the same: write down the care you want, and name the person who will speak for you.

Why this matters

If you cannot speak for yourself and you have no form, your family may have to guess what you would want. They may not agree with each other. A court may even have to name a person to decide for you. A clear form cuts that risk. It gives your agent and your care team a firm base to work from.

Use of these forms has grown, but gaps stay wide. A review of 150 studies, printed in the journal Health Affairs in 2017, found that 36.7 percent of adults in the United States had done some kind of advance directive. Among adults age 65 and over, the share was 45.6 percent. In the Health and Retirement Study, among adults age 60 and over who died, the share who had set out end-of-life instructions rose from 47 percent in 2000 to 72 percent in 2010. Even with that growth, many older adults still have no form on file.

Federal law adds one more push. Hospitals and nursing homes that take part in Medicare must tell you about your rights under state law to accept or refuse care and to make an advance directive. They must also ask if you have one. That question at check-in is much easier to answer when the form is already done.

Steps to get started

First, think about what matters to you. Ask what kind of life you would find worth living, and what you would not want done to extend it. There are no right or wrong answers. Your answers guide the rest of the work.

Second, talk with the people close to you. Tell your agent what you want before a crisis hits. A form plus a frank talk works far better than a form alone, since no form can list every case that may come up.

Third, get your state form. State health offices, hospitals, and your local Area Agency on Aging can give you the right form for free. Forms differ by state, so use the form for the state where you live and get most of your care.

Fourth, fill it out and sign it the way your state asks. Most states ask for adult witnesses, a notary, or both. Read the first page of the form with care, since it lists the rules for your state. You can change or cancel the form at any time while you can still make your own choices.

Fifth, share it. Give a copy to your agent, to each of your doctors, and to the hospital you would most likely use. Keep a copy at home where family can find it in a rush. Tell your family where it is. A form locked in a safe that no one can open does no one any good.

Sixth, review it once a year and after any big change in your health or your family. If your agent moves away, or your wishes change, make a new form and share the new one the same way.

Who covers what

• Original Medicare: pays for a voluntary talk with your doctor or other qualified health care professional about advance care planning, under Medicare Part B. The talk can stand alone or form part of your yearly wellness visit, and it may or may not end with a form filled out. Medicare does not pay a lawyer to draft forms for you.
• Medicaid: does not pay to prepare advance directives. The state forms are free, so cost should not block you. Medicaid health care you later get is still guided by the wishes your form sets out.
• Private pay: most people pay nothing, since state forms are free. If you want a lawyer to help you draft your forms, you pay that fee out of pocket. Ask for the fee in writing before the work starts.

Sample Situation

Rosa, age 71, has heart disease and lives alone. Her daughter lives one town away. Rosa picks up her state form at her clinic, fills out the living will part at her kitchen table, and names her daughter as her agent. She signs the form in front of two adult witnesses, as her state asks. She gives copies to her daughter, her heart doctor, and her local hospital, and keeps one in a labeled folder by her phone. At her next wellness visit, she and her doctor talk through her wishes, and the doctor notes the form in her chart. Rosa now knows her wishes are on record in the places that would need them.

Your next step

Advance directives are one part of planning for care at the end of life. Our Hospice section explains what hospice care is, who it serves, and how it is paid for.

Sources

• https://pubmed.ncbi.nlm.nih.gov/24697553/