End-of-Life Decision Making

"Do everything you can to save my father." Doctors hear this often. It's the way many families respond as they obviously do not want to lose a loved one, but it's not necessarily what their father would have said. That's why people need to think about advance directives (sometimes called living wills) for medical care and the appointment of a health care agent.

What are advance directives?

Advance directives are documents, written while a person is still able to make decisions, that express their wishes related to life support in case they are not able to express their wishes in the future. These include cardiopulmonary resuscitation (CPR), respirators, and any other measures that the person cares to list.

Why does the advance directive only apply if the person is mentally unable to make decisions?

When the person is still mentally capable, the doctor can just ask the person about his or her preferences concerning treatment. The advance directive is a document that gives the health care team guidance on the patient's wishes only if the patient is unable to express those desires.

Why would someone not want CPR?

Most relatively healthy people would want CPR if their heart were to stop. That's because if CPR is successful, they can expect to recover, leave the hospital, and continue with their active lives for a reasonable period of time. Some elderly or terminally ill people who have become incurably frail might decide not to have measures instituted that will either only extend their lives in a vegetative state or result in their being senseless because of their specific medical condition. Some people decide that they won't want CPR and respirators once they can no longer remember the names of their children (or their own names).

Why would someone want CPR?

Some people might make the opposite decision. They might decide to have CPR and machines to support artificial breathing because they want to live as long as possible. If you make a decision like that, it will be respected by doctors and hospitals. The doctor is expected to make a reasonable decision about which measures might help and are reasonable. The input of the patient in this process is very important. Your personal and religious beliefs will influence these decisions.

• If you check into the hospital for any reason, even if you're not in any life-threatening danger, federal law requires the hospital to ask if you want CPR. You must be offered a document to sign after selecting certain choices about what treatment you want if you lose your mental competence. However, the paper cannot indicate which choices would be the wise ones to make.
• Even if a patient decides they do not want CPR, they may check off that they would still want antibiotic therapy, IV fluid therapy, and artificial feeding through a tube. They do this because they feel as if they can recover.
• On the other hand, if they visualize a time when they can't talk or understand conversation -- signs of the end stages of organic brain syndrome, dementia or senility, they might decide that they wouldn't want IV fluid, antibiotic therapy, or artificial feeding through a tube. They might want the medical team to concentrate on comfort measures rather than life-prolonging measures. A person who is writing advance directives needs to plan for such an end stage of life.
• Another option is to refrain from writing advance directives that specify particular treatments but, instead, to designate a health care agent. The agent would be someone who will make decisions for you when you can no longer make them for yourself. Then, just tell your health care agent what your wishes would be in various situations. The person you name as your health care agent will then make decisions (once you are not able to make them) as per your previous instructions and guidance.

What should the advance directive say?

It's hard to predict your medical situation when an advance directive document takes effect. You could be confined to a bed or a chair. You may not be able to recognize people or have a conversation. You may not be able to read or understand what is said to you. You may feel that if you reached a point when sustaining your life would not be your wish.

• It's nearly impossible to write an advance directive that will take into account the exact circumstances that you will be in at the end of your life. You do not need to write a detailed directive that says what your family should do in each possible situation.
• Discuss your preferences with your family or those close to you whom you'd trust to make the same health care decisions you'd make if you were able to make your own decisions.

Who should be your designated health care decision maker?

In a document separate from your advance directive, name a particular person to be your health care decision maker. Name an alternate in case the first person named is unable to be your health care surrogate when the time comes.

• That document is called a Durable Power of Attorney for Medical Care. It will be your best protection when it comes to implementing your wishes during a difficult time.
• The document naming a health care agent is particularly important if you'd prefer a nonrelative to make your health care decisions for you. If you don't name a nonrelative, the hospital will usually seek out the closest relative or the courts will name a relative if there's one available. This might not be the person you would like as a decision maker.

If you already have an advance directive, but you decide that you want it to say something different, then change it.

Write a new one, give copies to your family, your friends, your doctor, and the hospital you're most likely to use. Tell them to throw out the old one.

Having advance directives gives the family your message when you are no longer able to express the message. It gives them the license to say to the doctor, "Do everything you can to keep my father comfortable, but don't prolong his life artificially with tube feedings and antibiotics."

• Choice in Dying or Partnership for Caring, Inc., is a nonprofit organization that provides advance directives, counsels patients and families, trains professionals, advocates for improved laws, and offers a range of publications and services.
• Read about advance directives in the Patient Education Forum of the American Geriatrics Society.
• The American Academy of Family Physicians discusses advance directives and do not resuscitate orders.
• Last Acts is a national coalition to improve care and caring at the end of life.
• Patient Advanced Educational Resource, also known as PAER, publishes a family guide to advance directives and code status designations entitled What's the Patient's Code Status?
• Five Wishes is a document you can order that helps you think about, and describe for your family, how you'd like your medical priorities to be addressed when you are no longer able to speak for yourself.