Patient education: Advance directives (The Basics)

What are advance directives? — These are legal documents in which you write out ahead of time what types of medical care you would want if you ever become unable to speak for yourself. These documents can help ensure that you get the care you want even if you have an unexpected serious illness or accident. They can also make things easier for the people who will need to make decisions for you if you become unable to make them yourself.

Are there different kinds of advance directives? — Yes. The most useful kinds of advance directives are:

●Health care proxy (also called the durable power of attorney for health care) – This document lets you choose someone to make medical decisions for you if you become unable to speak for yourself. This makes your choice of a decision-maker clear to your doctors and family members. When you choose a health care proxy, it is important to talk to the person you choose about the things that you do or don't want. That way, they know what to do later if they have to speak for you.

●Living will – This document tells health care providers what type of care you want if you become unable to speak for yourself. For instance, it lets you record in writing whether you would want a feeding tube put in if you had a serious illness or accident.

●Do not resuscitate/do not intubate order ("DNR/DNI") – If you decide that you do not want your heart restarted if it stops and you do not want a breathing tube put in if you stop breathing, you can ask for a DNR/DNI. This is a form that must be signed by a doctor. It tells all of your health care providers that you have decided you do not want these treatments.

Advance directives work best when they are part of a team effort that includes not only the person making the decisions, but also doctors, emergency health workers, and places like hospitals and nursing homes.

The Physician Orders for Life-Sustaining Treatment ("POLST") is a form for people who already have a serious illness or are very weak and likely to need medical help. It details exactly what care should be given and not given, based on your choices and wishes. It is signed by your doctor, and you can keep a copy at home to be used in an emergency. A copy is also kept on file at any hospital or other place where you might get medical care. Not every state has a POLST program. To find out if your state has one, go online to www.polst.org.

How do I choose a health care proxy? — Choose someone who:

●You know and trust

●Can separate their own wishes from yours

●You know would carry out your wishes if necessary

●Could be easily reached if needed

●Could handle it if other family members or loved ones wanted you to get treated differently than you would want

Some people choose a second person as an alternate proxy, in case their first choice cannot be reached when decisions need to be made.

Who should have an advance directive? — Advance directives are a good idea for anyone, but they are especially important if:

●You are older than 65.

●You have a serious life-threatening illness, such as advanced cancer, or end-stage heart or liver failure.

●You want to make sure that you can choose the person you would like as your health care proxy (decision-maker).

What kinds of decisions will I need to make? — Your advance directives can have as much or as little detail as you want. But many people who have advance directives write down their wishes about the following treatments:

●Breathing tubes – If you stop breathing or are having a very hard time breathing, you can get attached to a machine that will help you breathe. For that to happen, you will have to be "intubated." This means that a tube will be put down your throat and into your lungs. Then, the tube will be connected to a breathing machine. When the tube is in place, you will not be able to talk, at least at first. Plus, you will probably be sedated, meaning that you will be on medicines that make you sleep.

Sometimes, a breathing machine is needed only for a short time. For instance, some people need the breathing machine just while they recover from a lung infection. When deciding about a breathing tube, consider whether you would want it at all, want it only for a short time, or want it no matter what. Also, remember that any time a breathing machine is used, it is hard to know for sure if and when it can be disconnected.

●Cardiopulmonary resuscitation ("CPR") – If your heart stops beating suddenly, doctors might be able to restart it by pumping on your chest, putting in a breathing tube and pushing air into your lungs, giving you an electric shock (called "defibrillation"), and/or giving you special medicines. Some people recover completely after having their heart restarted. Others have permanent brain damage from a lack of blood flow to the brain; this is most likely in people who have an advanced, serious illness.

●Feeding tubes – If you become unable to eat, you can have a tube put into your stomach or intestines that can deliver nutrients. A feeding tube can keep a person's body going while they heal and get strong. But it can also keep a person alive for a long time even if there is no chance the person will recover.

Can I change my mind? — Yes. You can change your mind at any time. If you sign an advance directive and you decide that you want a different kind of treatment or you no longer want the health care proxy you chose, tell your doctor or nurse about your new decision. If you want to name a new health care proxy or want to write down new wishes, you can create new documents.

How do I make an advance directive? — The following table lists resources that can help you learn more about making your own advance directives (table 1).

More on this topic

Patient education: Medical care during advanced illness (The Basics)
Patient education: Breathing tubes and ventilators (The Basics)
Patient education: CPR for adults (The Basics)
Patient education: CPR for children (The Basics)
Patient education: Enteral (tube) feeding (The Basics)
Patient education: How to care for a G tube or G button (The Basics)
Patient education: Palliative care (The Basics)