If you have been diagnosed with cancer, putting your health care wishes in writing is important to do.
Thinking and planning for what could happen in the future and talking about it with family, friends, and caregivers can be difficult. Even if it is hard, knowing your wishes are clear can give you and your family peace of mind. Your caregivers may need to make important health care decisions for you when you are sick and knowing your wishes can make this easier on them.
Talking about these decisions is good to do, but it is not enough. It is important to put these priorities in writing. Then, your health care team and loved ones will know what you want, even if you become too sick to make decisions. These efforts are called advance care directives.
What decisions do I need to make about my health care?
Start by focusing on 2 general decisions:
What type of care do I want if I am too sick to tell someone?
Who do I want to speak for me if I'm too sick to make decisions for myself?
A legal document called an advance directive can guide these decisions.
What is an advance directive?
An advance directive is a legal document. It details the type of care you want if you become too sick to tell someone. It tells your family and health care team who you want to speak for you if you become too sick to make decisions for yourself.
An advance directive has 2 parts: a living will and a durable power of attorney for health care.
Living will. This document describes the treatments or procedures that you want if you become seriously ill. It also describes any procedures that you do not want. It will also describe the conditions for when these choices apply.
Durable power of attorney for health care. This document names a person you trust to make decisions about your care. That person would become your "health care representative" (see below).
When you are preparing your advance directive, it is helpful to think about the answers to the questions below in the context of your serious illness. Your cancer care team can guide you on how effective certain medical interventions may be in the setting of your specific disease. This can help guide your answers to these questions:
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? Dialysis is a mechanical process that filters waste from your 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 advance directives help?
Advance directives are an important part of your care. They can help you:
Think ahead of time about what matters most to you in your care.
Describe the care you would want.
Have important conversations with your loved ones ahead of time on difficult topics.
Give you and your loved ones peace of mind.
Guide your loved ones. They will not have to guess your wishes if you cannot tell them.
Give clear permission to your health care representative.
How do I create an advance directive?
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. These can be updated as your health changes.
In the United States, each state has its own rules and guidelines. These are often easy to find online and you can also find it on the National Hospice and Palliative Care Organization's website. You can also ask a member of your health care team to help you get them.
In most states, you must sign your advance directive in front of a notary public. You can also sign it in front of 2 witnesses who are not related to you or employed by your health care system.
When you create an advance directive, tell your family and health care team. Also, tell them where you keep this legal document and if you make changes.
What is 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. First, 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 health care representative
Choose someone who is 18 or older. Your country or state may have other rules, too. Learn what those rules are to make sure the person you choose qualifies. Your health care representative should also be:
Someone you trust and who knows you well
Willing to talk about your wishes ahead of time
Willing to speak up for you in the future, even if it is difficult
Someone who respects your wishes even if they have different opinions
Able to come to your home, hospital, or care facility
Your health care representative might need to handle a disagreement. For example, a family member might disagree with your doctor. In that case, your health care representative would 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.
After you choose your health care representative, fill out your state's health care representative form. Sign it, have it witnessed or notarized, and give your doctor a copy.
Making decisions for urgent or emergency care
In an emergency situation, things can happen very quickly. Your health care representative may not be present to give direction. While you cannot plan for everything, you can let your health care team know what kind of care you want in urgent or emergency care. You can record what you want to happen in this kind of situation using physician orders for life-sustaining treatment (POLST) and, if wanted, a do-not-resuscitate order (DNR).
Physician orders for life-sustaining treatment (POLST). A POLST is a medical order that addresses the type of care you would like in an emergency situation. This includes important information about the level of care you want in an emergency situation. It gives more detailed information about your wishes than a DNR (see below). A POLST must be filled out with the help of a health care professional who can guide you in the context of any serious illness you may have.
You can indicate in a POLST if you want:
Full treatment. The health care team will use all medically effective treatments to try to sustain life. This includes medical and surgical treatments, intensive care, and a breathing machine (ventilator) if necessary.
Selective treatment. The health care team will attempt to restore function, but avoid intensive care and many resuscitation efforts. You may be transferred to a hospital.
Comfort-focused treatment. If you select this, the health care team will make you feel as comfortable as possible and allow a natural death. You will only be transferred to a hospital if they cannot make you comfortable where you are.
On the POLST form, you can also let the health care team know if you want CPR and medically assisted nutrition, like feeding tubes.
In the United States, the POLST form you should use depends on your state. They may be called something else, depending on where you live. You can find a list of the POLST program names here on the National POLST website.
A "do-not-resuscitate" (DNR) order. Another type of medical order that you can keep on file is a "do-not-resuscitate" (DNR) order. A DNR only applies if your heartbeat and breathing stop and you are unresponsive. This directive tells health care professionals that you do not want them to try to start your heartbeat again, called resuscitation, cardiopulmonary resuscitation, or CPR.
If you are considering a DNR, think about if you would want CPR and in what situations. Talk about the possibilities with a member of your health care team if you'd like. CPR rarely works for people with advanced cancer and, if it does work, there may be lasting brain damage. If a person's goal is to live comfortably for as long as possible and then die gently, they may choose a DNR to avoid CPR.
CPR also usually includes a breathing machine called a ventilator. This 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. These are very personal decisions, and different patients make different choices.
Like a POLST, a DNR is a medical order and it must be completed by a member of the health care team.
Can I change my mind about my advance directive, POLST, or DNR?
Yes. You can change your mind about your wishes at any time and make changes to your advance directive, POLST, or DNR. Check the requirements of your state for each of these forms to make the changes. Advance directives and medical orders are available to you so that you can make the best choices for you about your health care. Those choices are always your decision.