If you have been diagnosed with cancer, planning for your health care ahead of time is a good idea. Thinking and planning for what could happen in the future can be a difficult topic for some people to think about or discuss. However, knowing your wishes can give your family peace of mind if they need to make health care decisions for you because you are not able.
It is important to put your decisions and priorities in writing. Then, your health care team and loved ones will know what you want, even if you become too sick to make these decisions.
Consider the following ways to make health care decisions ahead of time.
This section explains how an advance directive and health care representative can help make decisions on your behalf.
Creating an advance directive
An advance directive is a legal document. It tells your family and health care team who you would want to speak for you if you were too sick to make decisions for yourself. It also provides information about the types of care you want if you become too sick to tell them.
There are 2 parts to an advance directive. The first part is called a Durable Power of Attorney for Health Care. In this part you can name people you trust to make decisions about your care. The people you name become your health care representatives. The second part, called a living will, lists the treatments you think you would want if you were seriously ill. It also includes the treatments you think you would not want.
Advance directive forms are slightly different in every state, so you need to find your state’s information. The National Hospice and Palliative Care Organization has free state forms available. You can create your own advance directive or have a lawyer help you. All adults should have advance directives on file with their doctors, even if they are not sick.
In most states, you must sign your advance directive in front of a notary public or 2 witnesses who are not related to you or employed by your health care system. Once you do, health care providers can follow it.
What does an advance directive include?
An advance directive includes answers to questions such as:
If your heart stops beating, do you want doctors to try to start it again?
If you cannot breathe on your own, do you want a breathing machine to do it for you?
If your kidneys no longer work, do you want dialysis? (This is a mechanical process that filters waste from the blood.)
If you cannot eat or drink, do you want to get food and liquid through a tube?
If you die, do you want to donate your organs or other body tissues?
How do I create an advance directive?
Each state has its own rules and guidelines. These are often easy to find online. You can also ask a member of your health care team to help you get them.
When you create an advance directive, tell your family and health care team. Also, tell them where you keep it and if you make changes.
Get an advance directive form for your state.
How can an advance directive help me?
Creating an advance directive can help you:
Think ahead of time about what would matter most to you and the care you would want.
Have peace of mind because you wrote down wishes that can guide your family and doctors in making decisions about your care.
Help your loved ones. They will not have to guess your wishes if you cannot tell them. And they will have clear permission from you to speak your wishes.
When do doctors use my advance directive?
Your doctor and health care team will only use your advance directive if 2 doctors agree you are too sick to make decisions.
What to do with your advance directive
Keep a copy at home.
Give a copy to every place you get treatment. This includes your doctor’s office and hospital.
Share copies (printed or scanned) with the person(s) you name as a health representative and other people you trust.
Tell your family if you change your advance directive. Also, tell your health care team and health care representative, if you have one. The information below explains what a health care representative is.
Choosing a health care representative
A health care representative is someone who tells others what you want. This only happens if you are too sick to do so. Your doctor must put it in writing that you cannot make decisions. Then, your representative can help. If you have an advance directive, this person follows it.
Another name for a health care representative is a "health care proxy.” You might also hear that this person has “power of attorney” or “medical power of attorney.”
How to choose a representative
The person you choose must be 18 or older. Your state might have other rules, too. Learn what they are to make sure the person you choose qualifies.
Your health care representative should also be:
Someone you trust
Someone who knows you well
Willing to talk with you about your wishes
Willing to speak up for you in the future, even if it is difficult
Able to come to your home, hospital, or care facility if needed.
In thinking about who to name as your health care representative, choose someone who respects your wishes, even if he or she has different opinions. For example, your proxy might always choose CPR for herself. But if you do not want CPR, she should be able to tell the health care team and family your wishes.
Your health care representative should be able to handle a disagreement. For example, a family member might disagree with your caregiver. In such cases, your health care proxy should be able to express your wishes to the people who disagree.
Consider choosing a second health care representative, too. This person can help if the first person cannot.
What to do after you choose a representative
Once you choose someone, fill out your state’s health care representative form. Sign it, have it witnessed or notarized, and give your doctor a copy.
Decisions for urgent or emergency care
This section explains the documents that can be used to explain what kind of care you want in emergency situations.
A “do not resuscitate” order
A “do not resuscitate” order is another way to say what kind of care you want. You can create one along with an advance directive. Or you can have one by itself. A “do not resuscitate” order is also called a DNR. Some health care systems use the term “allow natural death,” or AND.
What does a DNR (or AND) mean?
If your heart or breathing stops, the health care team will try to start it again. The medical term for this is “resuscitation.” It is also called “cardiopulmonary resuscitation,” or CPR. The law says that the health care team must do it unless you have a medical order about it. A DNR is this type of medical order. It says what you do and do not want.
Why would I not want CPR?
The main reason is because it does not always work. For example, CPR rarely works for people with advanced cancer. Even if it does, brain damage is possible. CPR may not be wanted if a person’s goal is to live as long as he or she is comfortable, and then to die gently.
CPR usually includes a breathing machine called a ventilator. The machine keeps you breathing if you cannot breathe on your own. Some people do not want CPR because they do not want to permanently stay on a ventilator.
How is a DNR different from an advance directive?
An advance directive is a legal document that says what you want in future situations. A DNR is a medical order that applies as soon as it is written. A DNR order says you do not want CPR if your heart stops beating. Emergency medical services, or EMS, cannot use an advance directive. They have to give CPR. But if you have a DNR, they can follow what it says and not start CPR.
If you are at home, you might want to keep a copy of your DNR order visible. For example, you might put it beside the bed or on the refrigerator. That way, caregivers will see it if they come to your house. In the hospital or care center, your DNR is usually in your medical chart.
How do I get a DNR?
Talk with your doctor. A qualified member of the health care team must complete a DNR for you.
What if I change my mind?
You can change your mind at any time if you have a DNR order and decide you want CPR. Tell your health care team, representative, or another person you want to change it.
Physician Orders for Life-Sustaining Treatment (POLST) form
A form called “physician orders for life-sustaining treatment,” or POLST, is a medical order. A POLST form addresses whether to use CPR in an emergency. Therefore, POLST forms can include DNR orders, but can also state that you want and must be given CPR if your heart stops beating.
Besides CPR, POLST forms can include your wishes on:
Having antibiotics for certain types of infections
Having a breathing or feeding tube
How is a POLST different from an advance directive?
An advance directive is a legal document. It says what you want in the future. A POLST is a medical order. It says what you want if you need immediate care. Emergency medical services staff, or EMS, cannot use an advance directive. But they can use a POLST.
If you are at home, you might want to keep a copy of your POLST form visible. For example, you might put it beside the bed or on the refrigerator. That way, caregivers will see it if they come to your house. In the hospital or care center, your POLST is usually in your medical chart.
How do I get a POLST?
Talk with your doctor. A qualified member of the health care team must complete the POLST for you. You and they must both sign it.
POLST forms are available in about half the United States. But they often have different names. These include MOST, POST, TPOPP, MOLST, and COLST. Ask your doctor, social worker, or another health care team member about POLST in your state.
What if I change my mind?
You can change your POLST at any time. Tell your health care team, representative, or another person that you want to change it. A POLST is yours, and your choices are your decision.
Making Decisions About Cancer Treatment
When You and Your Family Differ on Treatment Choices
National Cancer Institute: Advanced Directives
National Library of Medicine: Do-not-resuscitate order