What Are End-of-Life and Advance Directive Documents?

End-of-life documents, or advance directives, help ensure your healthcare wishes are carried out as you near death and after you die. They’re also used if you’re incapacitated, meaning you are unable to tend to matters regarding your own well-being (e.g., in a coma).

Advance directives include proxies, living wills, do-not-resuscitate (DNR) orders, and organ donor cards, all of which are meant to protect you when you can’t speak for yourself.

While often thought of as something only older adults need to have in place, the COVID-19 pandemic put a spotlight on the importance of these documents for all adults.

This article will walk you through why you need these documents, the situations they’re intended for, what you should consider, and how you can get started getting them in place.

Types of Documents

Legal requirements for end-of-life documents and the names of those documents vary from state to state. Some require signatures from witnesses who aren’t family members. Sometimes the documents must be notarized.

Both the documents and the requirements for them are there for your protection. The stricter the regulations, the more difficult it is for someone to go against your wishes.

Requirements also protect the person you designate to carry out your wishes, called your proxy. These documents give them a clear-cut set of rules that they are to follow, so there is no question about your intent or their judgment.

Durable Power of Attorney

Power of attorney (POA) gives a designated proxy the authority to make decisions for and about you up until a point at which you become incapacitated. The scope of these decisions can be limited to health care or more general, encompassing health care, legal, and financial decisions.

Durable power of attorney (DPOA) extends this authority so that the proxy can make decisions on your behalf even if you are incapacitated or have declining mental function.

This could be due to things like:

• Declining mental faculties, such as dementia
• Mental illness
• Incompetency
• Unconsciousness
• Coma
• Vegetative state
• Being medicated or intoxicated

Your proxy is legally bound to oversee decisions about your health care and follow your preferences as much as possible. However, while a DPOA says who will make decisions, it doesn’t specify what those exact decisions will be. For that, you need a living will.

A power of attorney’s authority is greater than that of anyone else who would typically have the power to make those decisions.

You may have a lot of reasons for giving this authority to a specific person, such as:

• Disagreeing with your closest relative about health care
• Wanting to spare your adult children from bearing the burden of making such decisions
• Preventing strain on familial relationships during what will already be a difficult time
• Not being legally married to a life partner who you want making the decisions
• Being separated from a spouse but still legally married
• Not trusting the person or people who would otherwise be making those decisions

Without a DPOA, your medical decisions will be made by your family, often with help from your doctor and possibly a hospital ethics committee.

If a family member thinks the proxy isn’t acting in your best interest or according to your instructions, they can file a petition in court. If the court agrees with the petitioner, they can revoke the authority and appoint a guardian to make decisions for you.

Living Will

A living will details your wishes for life-extending treatments. This document is useful if you become permanently unconscious or in a vegetative state, or if you’re dying from an illness.

Basically, a living will outlines the conditions under which you want to be kept alive or allowed to die. They include your wishes about such things as:

• Being put on a feeding tube or respirator (life support)
• Having your heart restarted
• Having emergency surgery
• How aggressively to manage pain and infections
• Whether you want dialysis
• Whether to prolong your life if you’re comatose
• Organ and tissue donation, or donating your body to science
• Cultural, religious, or personal preferences

If you don’t have a living will, know that doctors and hospitals will do all they can to keep you alive. That could mean, for example, keeping you in a vegetative state long term.

Your family will also have input on your medical care. However, that can lead to conflict between family members who disagree about what’s best.

Leaving your family members to make life-or-death choices during a difficult time can lead to guilt as well. A living will relieves them of this.

Your family can contest a living will in certain circumstances, such as:

• When instructions are ambiguous and need to be interpreted
• If medical advancements made after it was drafted change the available options

If your family wants to challenge your living will, they have to go to court and leave it up to the judge.

Do-Not-Resuscitate

A do-not-resuscitate (DNR) order spells out the conditions under which you prefer not to have your life saved by cardiopulmonary resuscitation, or CPR. That means if your heart stops, you won’t be revived.

To put a DNR in place, you have to talk to a healthcare practitioner. Only they can write the order.

Once it’s in place, medical personnel can’t try to revive you even if there’s a good chance they could save your life.

No one other than you can override a DNR that you put in place. However, a healthcare proxy or family member can both ask for and revoke a DNR order if you’re unable to communicate your wishes.

DNR vs. POLST

A physician orders for life-sustaining treatment (POLST) is a doctor’s order, like a DNR. But it covers more than just re-starting your heart and applies even when you’re aware and responsive.

POLSTs can be put in place when you’re expected to live for less than a year. They include your instructions for situations specific to your illness, including whether you want to be admitted to the hospital, resuscitated, or given a feeding tube.

Organ Donor Card

Another important end-of-life document is an organ donor card. Your body could provide numerous donated organs, tissues, and cells, including the:

• Eyes
• Heart
• Liver
  
• Skin
• Bone
• Bone marrow
• Stem cells
• Connective tissue, such as cartilage, tendons, and ligaments
  

For some, deciding to be an organ donor is simple. Others find it more difficult for a variety of reasons, including religious beliefs.​

Each state has different laws about how you record your donor status. For example, in some states, it just takes a signature on your driver’s license.

Be sure you understand the requirements in your state if you do choose to be a donor.

Getting Started

Experts recommend that everyone have a DPOA and living will.

Whether or not to secure a DNR or organ donation card is a personal decision only you can make. If you feel passionate about not being revived and/or donating organs after you die, getting these documents in place can ensure your wishes are followed.

These resources are a great place to start as you orient yourself in this process:

• Put It In Writing from the American Hospital Association
• Caring Connections from the National Hospice and Palliative Care Organization

State Requirements

Look into your state’s laws about these documents by contacting its department of aging. You can find contact information for yours on the Department of Health and Human Services’ website.

To make them legally binding, you may need to:

• Use specific forms
• Get documents signed
• Get documents notarized
• Secure witnesses, possibly who aren’t family members
  

If you reside in more than one state—for example, you winter in Florida and summer in New Jersey—you may need some documents drawn up in each state. For the most part, though, states recognize each others’ legal documents.

Where to Get End-of-Life Documents

You don’t have to have a lawyer draw these up. Many standard forms for each state are available online. They include some interactive forms that will ask you questions and generate a document tailored to the information you provide.

Some hospitals and healthcare providers can provide you with forms if you request them as well.

For organ donation, all you need to do is sign up online or at your state’s motor vehicle department. Visit the Health Resources and Services Administration’s website to learn what specific steps you need to take in your state.

End-of-life documents that are specifically for the elderly or terminally ill—a DNR, POLST, and similar documents—are medical orders that you must ask your doctor to draft for you.

While you can do all of this without any legal consult, there are benefits to hiring an attorney. They can help ensure that the language used is clear and the scope is comprehensive so your wishes are carried out and the documents aren’t contested.

Who to Involve

You may want to involve people close to you in the process of drawing up these documents. However, there are times when involving others may complicate the process and lead to conflict.

Carefully consider who you include and what contributions—negative or positive—they might make.

You might especially consider involving your proxy at this stage. If they understand your wishes from the beginning, it will be easier for them to ensure they are followed when the time comes. The drafting process also gives them time to absorb what role they will be taking on if they say “yes.”

When choosing the proxy who will have power of attorney, think about:

• Who you can trust to make these decisions
• Who will be comfortable taking on the role and best able to take on its responsibilities when the time comes
• Who will be able to make decisions for you based on your expressed wishes and best interests, rather than their emotions and personal opinions
• Who is best able to make decisions under pressure
• Who will be able to firmly defend the decisions being made to others, should the need arise

A proxy can be a spouse, other family member, or friend. While they can live anywhere, it can be helpful to choose someone nearby, as it will be easier for them to interact with doctors in person if needed.

It's wise to also specify a secondary proxy in your DPOA document. This is the person you’d like to become your proxy in the event your primary designee dies first or is otherwise unable to speak for you.

What to Include

As you work through deciding what documents to get and what they should say, think about questions such as:

• Do I want to extend my life by any means? If not all means, which?
• Under what circumstances would I rather not be kept alive?
• What cultural, religious, or ethical matters should be considered?

You may want to have your healthcare provider weigh in. They may have valuable input and insight into what situations your loved ones could face based on your illness(es).

Informing Loved Ones

When you let others know about the finalized documents is up to you.

Regardless of what others may expect, remind yourself that who will know what and when is entirely up to your discretion.

That said, you should make sure someone knows about your advance directive(s) before they’re needed. For documents that involve one, a proxy is the most logical choice.

When you are ready to tell a loved one:

• Talk them through your wishes to minimize confusion about your intentions.
• Let them know why you’ve made these decisions to help them understand.
• Explain the different roles people will play (e.g., your proxy versus other family members).
• Allow them to ask questions.
• Acknowledge their feelings on the matter, but remind them that these are your decisions to make for yourself.

This can be an uncomfortable or even scary situation. Facing your own mortality is hard, and forcing your loved ones to face it isn’t any easier. But in the end, both sides may find comfort knowing that a plan that respects your wishes is in place.

Storing and Updating Documents

File or store any paperwork or electronic files containing the documents. Tell your proxy, spouse, children, or whomever you deem appropriate where the documents are kept, and distribute copies to them as well.

You might consider putting your documents in a home safe, safe deposit box, or fireproof bag so they are protected and all in one easy-to-find place.

To let emergency medical workers know about your documents, consider printing out a notification card to carry in your wallet. The American Hospital Association has one available online.

Print out copies of your documents for yourself and consider taking them with you whenever you travel.

You can change your mind about your wishes after the paperwork has been drawn up. Get new documents to replace them (make sure they are dated, so it is clear they override previous versions) and inform your loved ones about the changes.

To be safe, you might want to destroy outdated copies of your directives.

Summary

A durable power of attorney lets you choose who will make decisions for you when you are incapacitated or near end-of-life. Living wills guide specific medical decisions. Having a lawyer help you with these documents is not required, but it may prevent them from being contested due to unclear language.

Do-not-resuscitate orders and similar documents (POLST, MOLST, etc.) outline when you do or don’t want treatments that would extend your life. Your doctor drafts theses.

Organ donor paperwork allows for your organs and tissues to go to someone who needs them after your death. This is easy to file through your state.

Laws and procedures for these, and the names of documents, vary by where you live. Make sure you understand your state’s laws regarding them. Let your loved ones know about these documents and get copies to those most likely to need them.

A Word From Verywell

You may have a hard time thinking about the circumstances that require these documents. However, it’s easier on everyone if you take care of them while you can.

Your decisions now can ease the burden on your loved ones at a difficult time and help them feel secure that you’re getting the type of care you want at the end of life.