Key Points for This Section

Planning for the end of life can be both rewarding and difficult. Making end-of-life plans can lower the stress on both the patient and the family. Palliative care relieves symptoms and can improve the quality of life for patients and their families. Hospice programs provide care given by experts on end-of-life issues.

Planning for the end of life can be both rewarding and difficult.

Thinking about and planning for the end-of-life can be a difficult time for patients and their families. Each person will have unique needs and will cope in different ways. This time is easier when patients, families, and health care providers talk openly about end-of-life plans. For many patients and their families, this can be a time of personal growth. These events often give people the chance to find out more about themselves and appreciate what is most important to them.

This summary discusses care during the last days and last hours of life, including treatment of common symptoms and ethical questions that may come up. It may help patients and their families prepare for the kinds of decisions that may be needed during this time.

Making end-of-life plans can lower the stress on both the patient and the family.

When treatment choices and plans are discussed before the last days of life, it can lower the stress on both the patient and the family. Knowing the patient's wishes can help make it easier for family members to make major decisions for the patient during a very emotional time. It is most helpful if end-of life planning and decision-making begin soon after diagnosis and continue during the course of the disease. Having these decisions in writing can make the patient's wishes clear to both the family and the health care team.

End-of-life planning usually includes making choices about the following:

• The goals of care (for example, whether to use certain medicines during the last days of life).
• Where the patient wants to spend his or her final days.
• Which treatments for end-of-life care the patient wishes to receive.
• What type of palliative care and hospice care the patient wishes to receive.

Palliative care relieves symptoms and can improve the quality of life for patients and their families.

The goal of palliative care is to improve the patient's and the family's quality of life by preventing and relieving suffering. This includes treating physical symptoms such as pain, and dealing with emotional, social, and spiritual concerns.

When palliative treatment is given at the end of life, care is taken to make sure the patient's wishes about treatments he or she wants to receive are followed.

Hospice programs provide care given by experts on end-of-life issues.

Hospice is a program that gives care to people who are near the end of life and have stopped treatment to cure or control their cancer. Hospice care is usually meant for patients who are not expected to live longer than six months. Hospice care focuses on quality of life rather than length of life. The goal of hospice is to help patients live each day to the fullest by making them comfortable and relieving their symptoms. This may include palliative care to control pain and other symptoms so the patient can be as alert and comfortable as possible. Services to help and support the emotional, social, and spiritual needs of patients and their families are also an important part of hospice care.

Hospice programs are designed to keep a patient at home with family and friends, but hospice programs also provide services in hospice centers and in some hospitals and nursing home facilities. The hospice team includes doctors, nurses, spiritual advisors, social workers, nutritionists, and volunteers. Team members are specially trained on issues that occur at the end-of-life. After the patient's death, the hospice program continues to offer support, including grief or bereavement counseling.

(See the PDQ summary on Transitional Care Planning ¹ for more information on home care needs.)

Glossary Terms

A state of sadness, grief, and mourning after the loss of a loved one.

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.

To adjust to new situations and overcome problems.

The process by which a professional counselor helps a person cope with mental or emotional distress, and understand and solve personal problems.

To heal or restore health; a treatment to restore health.

The process of identifying a disease, such as cancer, from its signs and symptoms.

The process by which a trained counselor or a support group helps a person work through normal feelings of sorrow after a loss, such as the death of a loved one.

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.

Refers to the practices and procedures used for the prevention, treatment, or relief of symptoms of a diseases or abnormal conditions. This term may also refer to a legal drug used for the same purpose.

A health professional trained to care for people who are ill or disabled.

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.

A health professional with special training in nutrition who can help with dietary choices. Also called dietitian.

Care given to improve the quality of life of patients who have a serious or life-threatening disease. The goal of palliative care is to prevent or treat as early as possible the symptoms of a disease, side effects caused by treatment of a disease, and psychological, social, and spiritual problems related to a disease or its treatment. Also called comfort care, supportive care, and symptom management.

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.

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

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.

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