End-of-Life Care
Parents are partners with doctors in decisions about their child's end-of-life care.
Even though new and better treatments have increased the chances of a cure or remission, some types of childhood cancer do not get better. When a child's cancer does not get better or comes back, parents may not be sure about whether to continue treatment and, if so, what kind.
Parents who are caring for a child at the end of life need a lot of support that includes family members and the child's health care team. The health care team can help parents understand how different types of treatment can affect their child's quality of life. Parents have to decide if they want their child to continue to receive treatment even if it is not likely to affect the cancer. They also have to decide if they want their child to take part in decisions about end-of-life care.
Parents have reported that they find the most support from cancer treatment doctors who:
- Give clear information.
- Communicate in a caring and sensitive way.
- Communicate directly with their child as needed.
- Let them know what to expect as their child nears death and help them get ready for it.
There may be services that can help with end-of-life care for children.
Some medical centers that specialize in cancer care for children have services that help with palliative and end-of-life care. These support services may include:
- Pediatric palliative care team.
- Pain service.
- Hospice care.
- Psychological and social support team.
- Bereavement program.
- Complementary and alternative medicine (CAM) services.
Other services that are helpful but may be harder to find include:
- Programs for siblings of children who are receiving end-of-life care.
- Hospice programs that accept children who are still receiving chemotherapy.
- Clinical trials that combine complementary and alternative treatment with standard treatment.
Even when palliative care and end-of-life care support services are not available, cancer treatment doctors may suggest other options to parents. If parents have home health care support, many are able to plan and give their child end-of-life care at home. This can have the following positive effects:
- The child may not need to be admitted to the hospital as often.
- The parents feel that they have more control and are better able to accept their child's death.
- If the child does die in the hospital, he or she is less likely to die in an intensive care unit, which often uses invasive treatments.
There are many important ways to improve end-of-life care for children.
When a child nears the end of life, the whole family needs compassionate medical, spiritual, emotional, and practical support. This includes the following types of help:
- Communication that is caring and sensitive to the needs of the child and the family. Communication should be based on the child's age and stage of development.
- Palliative care that includes ways to manage pain and other symptoms at the end of life. Medicines and non-drug treatments can relieve pain, agitation, itching, nausea, vomiting, and seizures. Platelet transfusions may be given to help prevent bleeding.
- Support for the emotional and spiritual needs of the child and the family that are based on differences among family members and on the family's cultural beliefs.
- Bereavement care which may include helping families create memories with the child, such as photo albums or handprints. It also helps the family to know what to expect at the time of death and in the days, weeks, and months that follow. Bereavement support sessions may be offered after the child's death. See the PDQ summary on Grief, Bereavement, and Coping With Loss 1 for more information.
- Advance care planning to help the family make decisions about:
- Types of treatment to be used.
- Whether the family wants the child to die at home.
- Whether the family wants hospice care.
- Funeral arrangements.
- Whether a Do Not Resuscitate (DNR) order will be in place.
- Whether taking part in decisions would help the child.
- Information and advice from the health care team about medical, ethical, and legal issues.
Good end-of-life care includes treatment and support that is based on the special needs of the child and family and improves their quality of life.
See the PDQ summary on Last Days of Life 2 for more information.
Glossary Termsagitation (A-jih-TAY-shun)A condition in which a person is unable to relax and be still. The person may be very tense and irritable, and become easily annoyed by small things. He or she may be eager to have an argument, and be unwilling to work with caregivers to make the situation better.bereavement (beh-REEV-ment) A state of sadness, grief, and mourning after the loss of a loved one.cancer (KAN-ser) 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 a cancer that begins in the skin or in tissues that line or cover internal organs. Sarcoma is a cancer that begins in bone, cartilage, fat, muscle, blood vessels, or other connective or supportive tissue. Leukemia is a 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. Also called malignancy.chemotherapy (KEE-moh-THAYR-uh-pee) Treatment with drugs that kill cancer cells.clinical trial (KLIH-nih-kul TRY-ul) A type of research study that tests how well new medical approaches work in people. These studies test new methods of screening, prevention, diagnosis, or treatment of a disease. Also called clinical study.complementary and alternative medicine (KOM-pleh-MEN-tuh-ree... all-TER-nuh-tiv MEH-dih-sin) Forms of treatment that are used in addition to (complementary) or instead of (alternative) standard treatments. These practices generally are not considered standard medical approaches. Standard treatments go through a long and careful research process to prove they are safe and effective, but less is known about most types of CAM. CAM may include dietary supplements, megadose vitamins, herbal preparations, special teas, acupuncture, massage therapy, magnet therapy, spiritual healing, and meditation. Also called CAM.culture (KUL-cher) 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.cure (kyoor) To heal or restore health; a treatment to restore health.developmental stage (dee-VEH-lup-MEN-tul stayj) The physical, mental, and emotional stages a child goes through as he or she grows and matures.do not resuscitate order (… ree-SUH-sih-TAYT …) 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.drug (drug) Any substance, other than food, that is used to prevent, diagnose, treat or relieve symptoms of a disease or abnormal condition. Also refers to a substance that alters mood or body function, or that can be habit-forming or addictive, especially a narcotic.ethical (EH-thih-kul) Having to do with beliefs about what is right and wrong in terms of how people behave. Also called moral.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.invasive procedure (in-VAY-siv proh-SEE-jer) A medical procedure that invades (enters) the body, usually by cutting or puncturing the skin or by inserting instruments into the body.medicine (MEH-dih-sin) 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.nausea (NAW-zee-uh) A feeling of sickness or discomfort in the stomach that may come with an urge to vomit. Nausea is a side effect of some types of cancer therapy.palliative care (PA-lee-uh-tiv kayr) 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 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.pediatric (pee-dee-A-trik) Having to do with children.platelet (PLAYT-let) A tiny piece of a cell found in the blood that breaks off from a large cell found in the bone marrow. Platelets help wounds heal and prevent bleeding by forming blood clots. Also called thrombocyte.psychological (SY-koh-LAH-jih-kul) Having to do with how the mind works and how thoughts and feelings affect behavior.quality of life (KWAH-lih-tee ... life) 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.remission (reh-MIH-shun) 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.seizure (SEE-zher) Sudden, uncontrolled body movements and changes in behavior that occur because of abnormal electrical activity in the brain. Symptoms include loss of awareness, changes in emotion, loss of muscle control, and shaking. Seizures may be caused by drugs, high fevers, head injuries, and certain diseases, such as epilepsy.sibling (SIB-ling) A person’s brother or sister who has the same parents.social support (SOH-shul suh-PORT) A network of family, friends, neighbors, and community members that is available in times of need to give psychological, physical, and financial help.spirituality (SPEER-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.standard therapy (... THAYR-uh-pee) Treatment that experts agree is appropriate, accepted, and widely used. Also called best practice, standard medical care, and standard of care.symptom (SIMP-tum) An indication that a person has a condition or disease. Some examples of symptoms are headache, fever, fatigue, nausea, vomiting, and pain.transfusion (tranz-FYOO-zhun) A procedure in which a person is given an infusion of whole blood or parts of blood. The blood may be donated by another person, or it may have been taken from the patient earlier and stored until needed. Also called blood transfusion.vomit (VAH-mit) To eject some or all of the contents of the stomach through the mouth. |
Table of Links | |
| 1 | http://www.cancer.gov/cancertopics/pdq/supportivecare/bereavement/Patient |
| 2 | http://www.cancer.gov/cancertopics/pdq/supportivecare/lasthours/patient |
