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Transitional Care Planning (PDQ®)     
Last Modified: 07/08/2008
Patient Version
End-of-Life Decisions



Caring for a person with cancer starts after symptoms begin and the diagnosis is made and continues until the patient is in remission, is cured, or has died. (See the PDQ summaries on Last Days and Hours of Life 1 and Loss, Grief, and Bereavement 2 for more information.) End-of-life decisions should be made soon after the diagnosis, before there is a need for them. These issues are not pleasant or easy to think about, but planning for them can help relieve the burden on family members to make major decisions for the patient at a time when they are likely to be emotionally upset.

A patient's views may reflect his or her philosophical, moral, religious, or spiritual background. If a person has certain feelings about end-of-life issues, these feelings should be made known so that they can be carried out. Since these are sensitive issues, they are often not discussed by patients, families, or doctors. People often feel that there will be plenty of time to talk later about the issues. Many times, though, when the end-of-life decisions are necessary, they must be made by people who do not know the patient’s wishes. A patient should talk with the doctor and other caregivers about resuscitation decisions as early as possible (for example, when being admitted to the hospital); he or she may not be able to make these decisions later. Advance directives can ensure the patient's wishes are known ahead of time. (See the Legal Assessment 3 section for information about these forms.)

These issues are important to discuss whether a patient is being cared for at home; in a hospital, nursing home, or hospice; or elsewhere.



Glossary Terms

advance directive
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.
cancer (KAN-ser)
A term for diseases in which abnormal cells divide without control. Cancer cells can invade nearby tissues and can 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.
cure
To heal or restore health; a treatment to restore health.
diagnosis
The process of identifying a disease by the signs and symptoms.
hospice (HOS-pis)
A program that provides special care for people who are near the end of life and for their families, either at home, in freestanding facilities, or within hospitals.
nursing home
A place that gives care to people who have physical or mental disabilities and need help with activities of daily living (such as taking a bath, getting dressed, and going to the bathroom) but do not need to be in the hospital.
PDQ
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.
remission
A decrease in or disappearance of signs and symptoms of cancer. In partial remission, some, but not all, signs and symptoms of cancer have disappeared. In complete remission, all signs and symptoms of cancer have disappeared, although cancer still may be in the body.
spirituality (SPIR-ih-choo-A-lih-tee)
Having to do with deep, often religious, feelings and beliefs, including a person’s sense of peace, purpose, connection to others, and beliefs about the meaning of life.
symptom
An indication that a person has a condition or disease. Some examples of symptoms are headache, fever, fatigue, nausea, vomiting, and pain.


Table of Links

1http://cancer.gov/cancertopics/pdq/supportivecare/lasthours/patient
2http://cancer.gov/cancertopics/pdq/supportivecare/bereavement/Patient
3http://cancer.gov/cancertopics/pdq/supportivecare/transitionalcare/Patient/49.c
dr#Section_49