What Is an Advance Directive?

May 7th, 2024

Written by: Kathleen Clohessy, RN
End of Life Content Writer

Professionally reviewed by: Jessica Empeño, MSW
National Director, Clinical Engagement, Compassion and Choices

A family playing an end-of-life game to easily figure out wishes for an advance directive

An advance directive is a legal document that spells out how you wish to be cared for if you are unable to make your own healthcare decisions. It also designates the person who can make healthcare decisions for you if you cannot make them yourself. Advance directives come in various formats, often differing from state to state. However, the two most common components of any advance directive are a living will (also called an advance healthcare directive) and a durable power of attorney for health care, according to the legal resource website Nolo.

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Types of Advance Directives

The four main types of advance directives (which may have different names in different U.S. states) are an advance healthcare directive or living will, a durable power of attorney for healthcare, portable orders for life-sustaining treatment (POLST) and an out-of-hospital DNR.

Advance Healthcare Directive or Living Will

An advance healthcare directive or living will is a written declaration regarding the medical care you do or do not want to receive should you become unable to speak for yourself. For example, if you entered a hospital in a coma or were living with advanced dementia, your advance healthcare directive would provide staff with information about your preferences concerning life-sustaining treatments. Some treatment options commonly seen at the end-of-life include:

Cardiopulmonary resuscitation (CPR) — a lifesaving technique that uses external compressions and electrical shocks to restart the heart when it has stopped beating effectively.
Intubation — the insertion of a breathing tube into your trachea.
Mechanical ventilation — a machine called a ventilator takes over the work of breathing for you.
Artificial feeding or hydration — supplies your body with nutrients and fluids intravenously or via a tube in the stomach.
Kidney dialysis — removes waste from your blood and manages your fluid and electrolyte balance when your kidneys are not working effectively.
Antibiotics or antiviral medications — medications that can treat many infections.
Comfort care — includes many interventions that may be used to keep you comfortable and manage pain while honoring your wishes about treatments you want to avoid. Comfort care may include pain medication, positioning, supplemental oxygen to help with shortness of breath and medicines to manage symptoms such as nausea, vomiting, constipation, diarrhea and fever.

Keep in mind as you consider your decisions that all of these options may not be available at the time you become ill, nor will offered life-sustaining treatments necessarily extend your life. In particular, your chances of surviving a cardiac arrest — even if it occurs in a hospital — are typically quite small. According to one 2023 study published in BJM, only 22% of patients whose heartbeat returned after less than one minute of CPR survived to hospital discharge and were functionally intact after the event. That percentage dropped to less than 10% after 10 minutes of CPR. The likelihood of surviving CPR also decreases significantly with age. Furthermore, people who undergo CPR are at risk for broken ribs, damaged internal organs, brain damage due to lack of oxygen and increased physical disability even if they do survive.

Similarly, a prolonged stay in the intensive care unit can result in a number of adverse physical and psychological outcomes. Known as post-intensive care syndrome or PICS, these can include profound weakness, problems with thinking and memory, and mental health problems such as anxiety, depression and symptoms of post-traumatic stress.

It is vital to take all of these potential outcomes into account as you make decisions about your healthcare.

In addition to decisions about end of life care, your advance healthcare directive can also include instructions regarding:

Organ and tissue donation — you can specify your wish to donate organs or tissue in your living will. You should also register as an organ donor through your state’s registry or through Donate Life America.
Donating your body to science — you can specify your wish to donate your body for scientific research in your living will. But you should always contact the organization you wish to donate to and register in advance.

Experts emphasize that while an advance directive serves as a guide for your healthcare team and surrogate decision-makers, it cannot possibly address every scenario that might occur. In fact, despite the best efforts of those who create them, many advance directives are so ambiguous or contradictory that doctors have a great deal of difficulty deciding what a patient who cannot speak for themselves actually wants. For that reason, it is imperative that, in addition to creating a written document, you talk to your loved ones about your values, goals and wishes around the end of life. The more your loved ones know about your preferences, the more prepared they will be to advocate for you with the healthcare team.

Durable Power of Attorney for Health Care

Also known as a medical power of attorney, this document designates the person who can make decisions for you when you cannot make them yourself. This person may also be called a:

Healthcare agent
Healthcare proxy
Healthcare surrogate
Healthcare representative
Healthcare attorney-in-fact
Patient advocate

Healthcare Agent Qualifications

In every state in the U.S., the only legal requirement for someone to serve as your healthcare surrogate is that they are over 18 years of age (except in Alabama, where the minimum age is 19.) The person does not need to be a relative. In fact, sometimes those people who are closest to you are not the best choice because they are too emotionally invested in what happens to you. When it comes to medical decision-making, the best healthcare agent is someone who is:

Calm in a crisis
Knowledgeable about your values and goals
Knowledgeable about your medical condition
Able to communicate effectively with healthcare providers
Willing and able to advocate for you when it becomes necessary

In addition to your primary healthcare surrogate, you may also choose one or more alternate decision-makers. These secondary designees can step in if your primary agent is unavailable. They may also help the primary decision maker sort through difficult information, negotiate family conflicts and communicate effectively with the medical team.

Both your living will, and your durable power of attorney for healthcare should be stored in a safe place, updated as life or circumstances change and copies should be distributed to your doctor, attorney and the people closest to you.

POLST and Out-of-Hospital DNR

In addition to a living will and durable power of attorney for healthcare, some individuals may wish to speak with their doctor about implementing orders to avoid life-saving procedures if they become gravely ill or suffer a cardiopulmonary arrest. Two documents may facilitate this: POLST, an acronym for “providers orders for life-sustaining treatment,” and an out-of-hospital DNR. Both of these documents are suitable only for individuals who are seriously ill, very elderly or medically frail who — in consultation with their physician — have decided that they want to allow their deaths to occur naturally rather than opt for invasive measures to prolong their lives.

Unlike a living will, a POLST or out-of-hospital DNR is a valid medical order that EMS and hospital personnel are legally obligated to follow in most circumstances. Additionally, unlike a DNR order written in a hospital, which is valid only for a single hospitalization, POLST and out-of-hospital DNR are portable — that is, they follow the patient and remain valid no matter where they are receiving care.

How Do I Create an Advance Healthcare Directive

Creating an advance healthcare directive, living will and power of attorney for healthcare is relatively straightforward. All 50 states and the District of Columbia have legislation that outlines their requirements for advance directives, and most states have implemented POLST standards to some extent. That said, there is as yet no overarching national consensus about what an advance directive must contain or how it should be executed. So, anyone who is creating an advance directive must familiarize themselves with the laws of their state. A guide to your state laws can be found on the website CaringInfo, where you can also download a copy of the statutory form for your state.

After you have completed your advance directives, it is imperative that you ensure they are available to those who will be most likely to need them if you become seriously ill. To accomplish this, follow this advice:

Keep the originals in a safe but easily accessible place, such as an unlocked desk drawer.
Give a copy to your healthcare team.
Give a copy to your healthcare agent and any alternates.
Carry a wallet-sized card that indicates you have advance directives, identifies your healthcare agent and states where a copy of your directives can be found.
If you have a POLST or Out-of-Hospital DNR, display it in a prominent place such as your refrigerator or bedroom door, where Emergency Medical Personnel will see it if they respond to an emergency.
Keep a copy with you when traveling.
Give a copy to your palliative care or hospice team (if applicable).

Additionally, the importance of speaking with your loved ones about your values and goals around the end of life cannot be overemphasized. Advance directives, especially living wills, are essential but flawed documents. They can be ambiguous and sometimes conflict with other instructions, such as a POLST. Knowing your values — what is important to you, what makes your life worth living and what you can’t imagine living without — is the only way your loved ones and care team can provide the kind of care that will truly meet your end-of-life goals.

Reviewing and Revising Advance Healthcare Directives

Advance directives for healthcare are not meant to be static documents. On the contrary, they should be reviewed regularly and updated when significant life events or changes to your health occur. Some common circumstances that may prompt a revision of your advance directive include:

New diagnosis or change in disease status: Any significant change in your health status such as a new diagnosis of a life-limiting disease or a change in prognosis should prompt a review of your advance healthcare directive. Review your treatment options and goals of care with your doctor to determine if a change is warranted.
Change of marital status: You may wish to change your healthcare agent if you divorce, are widowed or remarry.
At least every 10 years: Your values and preferences may change significantly over time, especially in regards to care at the end of life. As you age, you may wish to review your living will more often to ensure that it is still consistent with your end-of-life goals.

Advance Healthcare Directives and Dementia

Since the early part of the 21st century, the possibility of disability, decline and death from Alzheimer’s disease or another form of dementia has been a growing concern. Nearly 7 million people in the United States are known to be living with Alzheimer’s disease. As the American population continues to grow older (age is the greatest risk factor for Alzheimer’s disease), researchers predict that number will reach 13.8 million by 2060, barring the emergence of an effective treatment.

Alzheimer’s disease is a disease that gradually gets worse over time — anywhere from 2 to 25 years depending on a person’s age and other health conditions — that currently has no cure. Changes caused by this brain disease tend to be subtle at first, often not significant enough to interfere with daily life. Over time, physical and cognitive changes will result in the need for around-the-clock supervision and assistance.

Advance care planning conversations and the completion of advance directives are especially important for a person living with dementia since given time, they will lose the ability to make decisions and communicate their wishes. However, since standard advance directive documents do not address the unique needs of a person living with dementia, a growing number of experts are encouraging the completion of a dementia directive as part of the advance care planning process.

A dementia directive is a way for people to communicate their wishes for future care and assist loved ones with decisions that support their goals as dementia progresses. It is intended to be completed in advance of a diagnosis or early in the disease process.

Several different dementia directives are available, such as those offered by Compassion & Choices and End of Life Choices New York and the Advance Directive for Dementia developed by Barak Gaster, MD and colleagues at the University of Washington.

That said, it’s essential to be aware that the simple existence of an advance directive for dementia does not guarantee that providers will follow it. The best way to improve the chance of wishes being honored is to talk openly with the physician and health care team, along with loved ones and the person(s) named as surrogate decision makers about goals, priorities and hopes for future care.

Conclusion

In summary, advance healthcare directives are essential documents that help ensure your values and wishes are honored when you cannot express them yourself. Although they cannot address every end-of-life scenario, they are valuable tools that augment conversations with your loved ones and healthcare providers about what care you do and do not want to receive if you are seriously ill.