Key Points for This Section

Choices about care and treatment at the end of life should be made while the patient is able to make them. Nutrition Support The goals of nutrition support for patients in the last days of life are different from the goals during cancer treatment. Making plans for nutrition support in the last days is helpful. Two types of nutrition support are commonly used. Resuscitation Ventilator Use Ventilator use may keep the patient alive after normal breathing stops. Before a ventilator is turned off, family members will be given information about what to expect. Sedation

Choices about care and treatment at the end of life should be made while the patient is able to make them.

In addition to decisions about treating symptoms at the end-of-life, it is also helpful for patients to decide if and when they want this treatment to stop. A patient may wish to receive all possible treatments, only some treatments, or no treatment at all. These decisions may be written down ahead of time in an advance directive, such as a living will. Advance directive is the general term for different types of legal documents that describe the treatment or care a patient wishes to receive or not receive when he or she is no longer able to speak their wishes.

The patient may also name a healthcare proxy to make these decisions when he or she becomes unable to do so. Having advance directives in place makes it easier for family members and caregivers when very important decisions have to be made in the last days, such as whether to give nutrition support, restart the heart, help with breathing, or give sedatives.

When the patient does not make choices about end-of-life care, or does not share his choices with family members, health care proxies, or the health care team, treatment may be given near death against the patient's wishes. As a result, studies show that the patient's quality of life may be worse and the family's grieving process may be more difficult.

Nutrition Support

The goals of nutrition support for patients in the last days of life are different from the goals during cancer treatment.

Nutrition support can improve health and boost healing during cancer treatment. The goals of nutrition therapy for patients during the last hours of life are different from the goals for patients in active cancer treatment and recovery. In the final days of life, patients often lose the desire to eat or drink and may refuse food or fluids that are offered to them. Also, procedures used to put feeding tubes in place and problems that can occur with these types of feedings may be hard on a patient.

Making plans for nutrition support in the last days is helpful.

The goal of end-of-life care is to prevent suffering and relieve symptoms. If nutrition support causes the patient more discomfort than help, then nutrition support near the end of life may be stopped. The needs and best interests of each patient guide the decision to give nutrition support. When decisions and plans about nutrition support are made by the patient, doctors and family members can be sure they are doing what the patient wants.

Two types of nutrition support are commonly used.

If the patient cannot swallow, two types of nutrition support are commonly used:

• Enteral nutrition uses a tube inserted into the stomach or intestine.
• Parenteral nutrition uses an intravenous (IV) catheter inserted into a vein.

Each type of nutrition support has benefits and risks. (See the PDQ summary on Nutrition in Cancer Care ¹ for more information.)

Resuscitation

An important decision for the patient to make is whether to have cardiopulmonary resuscitation (CPR) (trying to restart the heart and breathing when it stops). It is best if patients talk with their family, doctors, and caregivers about their wishes for CPR as early as possible (for example, when being admitted to the hospital or when active cancer treatment is stopped). A do-not-resuscitate (DNR) order is written by a doctor to tell other health professionals not to perform CPR at the moment of death, so that the natural process of dying occurs. If the patient wishes, he or she can ask the doctor to write a DNR order. The patient can ask that the DNR order be changed or removed at any time.

Ventilator Use

Ventilator use may keep the patient alive after normal breathing stops.

A ventilator is a machine that helps patients breathe. Sometimes, using a ventilator will not improve the patient's condition, but will keep the patient alive longer. If the goal of care is to help the patient live longer, a ventilator may be used, according to the patient's wishes. If ventilator support stops helping the patient or is no longer what the patient wants, the patient, family, and health care team may decide to turn the ventilator off.

Some patients may want to be allowed to die when breathing gets difficult or stops. It is important for the patient to tell family members and health care providers, before breathing becomes difficult, of his or her wishes about being kept alive with a ventilator.

Before a ventilator is turned off, family members will be given information about what to expect.

Family members will be given information about how the patient may respond when the ventilator is removed and about pain relief or sedation to keep the patient comfortable. Family members will be given time to contact other loved ones who wish to be there. Chaplains or social workers may be called to give help and support to the family.

Sedation

The decision whether to sedate a patient at the end of life is a difficult one. Sedation may be considered for a patient's comfort or for a physical condition such as uncontrolled pain. A patient's thoughts and feelings about end-of-life sedation may depend greatly on his or her own culture and beliefs. Some patients who become anxious facing the end of life may want to be sedated. Other patients may wish to have no procedures, including sedation, just before death. It is important for the patient to tell family members and health care providers of his or her wishes about sedation at the end of life. When patients make their wishes about sedation known ahead of time, doctors and family members can be sure they are doing what the patient would want.

Glossary Terms

A legal document that states the treatment or care a person wishes to receive or not receive if he or she becomes unable to make medical decisions (for example, due to being unconscious or in a coma). Some types of advance directives are living wills and do-not-resuscitate (DNR) orders.

A term for diseases in which abnormal cells divide without control and can invade nearby tissues. Cancer cells can also spread to other parts of the body through the blood and lymph systems. There are several main types of cancer. Carcinoma is cancer that begins in the skin or in tissues that line or cover internal organs. Sarcoma is cancer that begins in bone, cartilage, fat, muscle, blood vessels, or other connective or supportive tissue. Leukemia is cancer that starts in blood-forming tissue such as the bone marrow, and causes large numbers of abnormal blood cells to be produced and enter the blood. Lymphoma and multiple myeloma are cancers that begin in the cells of the immune system. Central nervous system cancers are cancers that begin in the tissues of the brain and spinal cord.

Having to do with the heart and lungs.

A flexible tube used to deliver fluids into or withdraw fluids from the body.

A member of the clergy in charge of a chapel or who works with the military or with an institution, such as a hospital.

The beliefs, values, and behaviors that are shared within a group, such as a religious group or a nation. Culture includes language, customs, and beliefs about roles and relationships.

A type of advance directive in which a person states that healthcare providers should not perform cardiopulmonary resuscitation (restarting the heart) if his or her heart or breathing stops. Also called DNR order.

A form of nutrition that is delivered into the digestive system as a liquid. Drinking nutrition beverages or formulas and tubefeeding are forms of enteral nutrition. People who are unable to meet their needs with food and beverages alone, and who do not have vomiting or uncontrollable diarrhea may be given tubefeedings. Tubefeeding can be used to add to what a person is able to eat or can be the only source of nutrition. A small feeding tube may be placed through the nose into the stomach or the small intestine, or it may be surgically placed into the stomach or the intestinal tract through an opening made on the outside of the abdomen, depending on how long it will be used.

A substance that flows smoothly and takes the shape of its container. Liquids and gases are fluids.

The normal response to a major loss, such as the death of a loved one. Grief may also be felt by a person with a serious, long-term illness or with a terminal illness. It may include feelings of great sadness, anger, guilt, and despair. Physical problems, such as not being able to sleep and changes in appetite, may also be part of grief.

A type of advance directive that gives a person (such as a relative, lawyer, or friend) the authority to make healthcare decisions for another person. It becomes active when that person loses the ability to make decisions for himself or herself. Also called HCP.

The long, tube-shaped organ in the abdomen that completes the process of digestion. The intestine has two parts, the small intestine and the large intestine. Also called bowel.

Into or within a vein. Intravenous usually refers to a way of giving a drug or other substance through a needle or tube inserted into a vein. Also called IV.

A type of legal advance directive in which a person describes specific treatment guidelines that are to be followed by health care providers if he or she becomes terminally ill and cannot communicate. A living will usually has instructions about whether to use aggressive medical treatment to keep a person alive (such as CPR, artificial nutrition, use of a respirator).

The taking in and use of food and other nourishing material by the body. Nutrition is a 3-part process. First, food or drink is consumed. Second, the body breaks down the food or drink into nutrients. Third, the nutrients travel through the bloodstream to different parts of the body where they are used as "fuel" and for many other purposes. To give the body proper nutrition, a person has to eat and drink enough of the foods that contain key nutrients.

A form of nutrition that is delivered into a vein. Parenteral nutrition does not use the digestive system. It may be given to people who are unable to absorb nutrients through the intestinal tract because of vomiting that won't stop, severe diarrhea, or intestinal disease. It may also be given to those undergoing high-dose chemotherapy or radiation and bone marrow transplantation. It is possible to give all of the protein, calories, vitamins and minerals a person needs using parenteral nutrition. Also called hyperalimentation, total parenteral nutrition, and TPN.

PDQ is an online database developed and maintained by the National Cancer Institute. Designed to make the most current, credible, and accurate cancer information available to health professionals and the public, PDQ contains peer-reviewed summaries on cancer treatment, screening, prevention, genetics, complementary and alternative medicine, and supportive care; a registry of cancer clinical trials from around the world; and directories of physicians, professionals who provide genetics services, and organizations that provide cancer care. Most of this information, and more specific information about PDQ, can be found on the NCI's Web site at http://www.cancer.gov/cancertopics/pdq. Also called Physician Data Query.

The overall enjoyment of life. Many clinical trials assess the effects of cancer and its treatment on the quality of life. These studies measure aspects of an individual’s sense of well-being and ability to carry out various activities.

To become well and healthy again.

A drug or substance used to calm a person down, relieve anxiety, or help a person sleep.

A professional trained to talk with people and their families about emotional or physical needs, and to find them support services.

An organ that is part of the digestive system. The stomach helps digest food by mixing it with digestive juices and churning it into a thin liquid.

An indication that a person has a condition or disease. Some examples of symptoms are headache, fever, fatigue, nausea, vomiting, and pain.

A blood vessel that carries blood to the heart from tissues and organs in the body.

In medicine, a machine used to help a patient breathe. Also called respirator.