End-of-life decisions should be made soon after the diagnosis of a terminal illness, before there is a need for them. These issues are not pleasant or easy to think about. The decisions usually reflect a person's philosophical, moral, religious, or spiritual background. If the patient has certain convictions about end-of-life issues, they should make these feelings known so that they can be carried out. But because these are sensitive issues, patients, families, or doctors do often not discuss them. They tend to put off speaking of these issues in an attempt to put off the inevitable and because it is uncomfortable to discuss one's death. People often feel that there will be plenty of time to talk about these issues later. However, many times when the end-of-life decisions are necessary, the patient and family are not ready or able to make the decisions, and the decisions end up being made by people who may not know the patient's wishes.
A first step in making decisions for the end of life, patients should complete an HCP, a Health Care Proxy form. In the U.S., each state has a different form but they have the same purpose. The HCP allows the patient to identify a person (called a proxy) to make medical decisions if the patient become unable to do so. The form does not have to be notarized, but it must be witnessed by two other people. In some states, the HCP is better than a living will because the patient does not have to specifically say which decisions need to be made, but that the proxy knows "what I would want".
A living will is similar to the HCP except that it allows a person to state in more detail what his or her feelings are about medical care, nutrition, and other medical issues so that the doctors and caregivers can carry out these wishes. Living wills are not available or legal in all states and usually require a lawyer and notarization to be complete in states where they are recognized. Do Not Resuscitate (DNR) orders tell doctors and other caregivers that a patient does not want extreme measure to be taken to save his or her life. The patient will not be resuscitated if his or her heart stops or if he or she stops breathing. People who want a DNR should talk with their doctors and caregivers as early as possible (i.e. when they are admitted into the hospital) instead of waiting until they are unable to make this decision. Even though people with end-stage disease and their families are usually reluctant talking about these issues, doctors and nurses may gently and respectfully introduce these issues when the time is right.
Hospice is a program now available that will allow a patient to die at home. Some states have DNR forms for people wishing to die at home. These advanced directive forms are signed by the patient's doctor and express the patient's wishes and intent not to be resuscitated. These issues are very important to discuss whenever a patient is being cared for, whether at home, in the hospital, in a nursing home, at hospice, or elsewhere.
