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Important Issues and Decisions
Sometimes people with terminal illnesses have to make decisions about how much treatment they want to have and how long they want to prolong life. Family members may have to make these decisions when the individual is too ill to decide. We must respect and support these decisions even if we do not agree with them—adults have the right to make these decisions.
A life-sustaining treatment is anything used to maintain one or more physical functions in a terminally ill person. This includes machines that breathe for the person, usually called respirators or ventilators. It also includes feeding someone by artificial means, such as through the veins or through a tube into the stomach. Therapies like this keep a person alive when he or she can no longer eat or drink or breathe without this kind of assistance.
Withholding and withdrawing treatment
Sometimes a terminally ill person (or the family) may decide to let a doctor start a treatment that will keep the person alive. Then, after a time, it might become obvious that the therapy is not meeting the goals of care or is doing more harm than it is good. For example, feeding someone through the veins or through a stomach tube can cause swelling, choking, difficulty breathing, discomfort, restlessness, nausea, constipation, and increased pain. If the life-sustaining treatment is causing this kind of discomfort for a terminally
ill person, the person and/or the family may decide that they want to stop the therapy and let the illness take its natural course toward death.
Stopping a life-sustaining therapy is legally and ethically acceptable. It is also acceptable not to start the therapy at all, if the terminally ill person and/or the family decide that the treatment is not in the person’s best interests. The benefits of treatment should be compared to the burdens of treatment when making these decisions.
Do not resuscitate
An order for “do not resuscitate” (DNR) means the person does not want cardiopulmonary resuscitation (CPR) performed if his or her heart stops and he or she stops breathing. It does not affect anything else about the person’s care. An individual with a DNR order may still want every other kind of life-sustaining treatment, such as tube feeding.
There is a specific form designed for out-of-hospital DNR that is used in the patient’s home setting. This form should be prominently displayed or immediately available should EMS personnel need it when they arrive at the patient’s home. Each state has their own out-of-hospital DNR regulations.
Advance directives are any oral or written instructions that a person has given about future medical care. These instructions are to be used if the person becomes unable to articulate his or her wishes.
There are two kinds of advance directives: a living will and a medical power of attorney. A living will states the person’s medical treatment wishes in writing. A medical power of attorney (or durable power of attorney for healthcare) appoints someone to make decisions about medical care when the person cannot make them. If there is no living will or medical power of attorney, the spouse, children, or parents of an individual will make medical decisions when the person cannot make them. This person is called a surrogate. The surrogate is supposed to make healthcare decisions that the terminally ill person would have made if possible and to act in the person’s best interests.
Every state has different rules about advance directives. Federal law requires healthcare facilities and agencies that receive Medicaid or Medicare funds to inform patients of their right to issue advance directives.