Overview
The Role of Family Caregivers
The Role of Parents
Talking with the Health Care Team
To Learn More About Communication in Cancer Care
Get More Information From NCI
Changes to This Summary (05/08/2009)
Questions or Comments About This Summary
About PDQ

Overview

Key Points for This Section

Good communication between patients, family caregivers, and the health care team is very important in cancer care. Patients with cancer have special communication needs. Some patients and families want a lot of information and choose to make decisions about care. Communication is important at different points during cancer care.

Good communication between patients, family caregivers, and the health care team is very important in cancer care.

Good communication between patients with cancer, family caregivers, and the health care team helps improve patients' well-being and quality of life. Communicating about concerns and decision making is important during all phases of treatment and supportive care for cancer.

The goals of good communication in cancer care are to:

• Build a trusting relationship between the patient, family caregivers, and the health care team.
• Help the patient, family caregivers, and health care team share information with each other.
• Help the patient and family talk about feelings and concerns.

Patients with cancer have special communication needs.

Patients, their families, and their health care team face many issues when cancer is diagnosed. Cancer is a life-threatening illness, even though advances in treatments have increased the chances of a cure or remission. A patient who is diagnosed with cancer may feel fear and anxiety about treatments that are often difficult, expensive, and complicated. Decisions about the patient's care can be very hard to make. Good communication can help patients, families, and doctors make these decisions together and improve the patient's well-being and quality of life.

Studies show that when patients and doctors communicate well during cancer care, there are many positive results. Patients are usually:

• More satisfied with care and feel more in control.
• More likely to follow through with treatment.
• More informed.
• More likely to take part in a clinical trial.
• Better able to make the change from care that is given to treat the cancer to palliative care.

Some patients and families want a lot of information and choose to make decisions about care.

Patients and their families should let the health care team know how much information they want about the cancer and its treatment. Some patients and families want a lot of detailed information. Others want less detail. Also, the need for information may change as the patient moves through diagnosis and treatment. Some patients with advanced disease want less information about their condition.

There may be differences in how involved patients and families want to be in making decisions about cancer care. Some patients and families may want to be very involved and make their own decisions about cancer care. Others may want to leave decisions to the doctor.

Communication is important at different points during cancer care.

Communication is important throughout cancer care, but especially when important decisions are to be made. These important decision times include:

• When the patient is first diagnosed.
• Any time new decisions about treatment need to be made.
• After treatment, when discussing how well it worked.
• Whenever the goal of care changes.
• When the patient makes his or her wishes known about advance directives, such as a living will.

The Role of Family Caregivers

Key Points for This Section

Family caregivers are partners in communication. Communication with the doctor helps caregivers as well as patients. Language and culture can affect communication. There may be problems with communication.

Family caregivers are partners in communication.

Families can help patients make better decisions about their cancer care. Patients and their family members can join together as partners to communicate with the doctor and health care team. When possible, patients should decide how much help they want from family members when making decisions. Communication between family caregivers and the health care team should continue throughout cancer care. It should include information about the goals of treatment, plans for the patient's care, and what to expect over time.

Communication with the doctor helps caregivers as well as patients.

Communication that includes the patient and family is called family-centered communication. Family-centered communication with the doctor helps the family understand its role in caregiving. Family caregivers who get specific and practical direction from the health care team are more confident about giving care. When caregivers receive this help, they can give the patient better care.

Language and culture can affect communication.

Communication can be more difficult if the doctor does not speak the same language as the patient and family, or if there are cultural differences. Every patient with cancer has the right to get clear information about the diagnosis and treatment so he or she can take full part in making decisions. Most medical centers have trained interpreters or have other ways to help with language differences.

If cultural beliefs will affect decisions about treatment and care, the health care team should be told about these beliefs. For example, a common Western belief is that an informed patient should make the final decision about cancer care.

There may be problems with communication.

There are many things that can block communication between the patient and doctor. This can happen if:

• The patient does not fully understand all the facts about treatment.
• The medical information is not given in a way the patient can understand.
• The patient believes the doctor will tell them the important facts about treatment and doesn't ask questions.
• The patient is afraid to ask too many questions.
• The patient is afraid to take too much of the doctor's time and doesn't ask questions.

Family caregivers can sometimes help when communication problems come up.

The Role of Parents

Key Points for This Section

Children with cancer need information that is right for their age. There are many ways for parents to communicate with their child.

Children with cancer need information that is right for their age.

Studies show that children with cancer want to know about their illness and how it will be treated. The amount of information a child wants depends in part on his or her age. Most children worry about how their illness and treatment will affect their daily lives and the people around them. Studies also show that children have less doubt and fear when they are given information about their illness, even if it is bad news.

There are many ways for parents to communicate with their child.

When a child is seriously ill, parents may find that communication is better when they:

• Talk with the doctor at the beginning of cancer care about open communication with their child and other family members. Parents should discuss how the family feels about sharing medical information with their child, and talk about any concerns they have.
• Talk with their child and share information throughout the course of the illness.
• Find out what their child already knows and wants to know about the illness. This will help clear up any confusion their child may have about the medical facts.
• Explain medical information according to what is right for their child’s age and needs.
• Are sensitive to their child’s emotions and reactions.
• Encourage their child by promising they will be there to listen to and protect him or her.

See the PDQ Pediatric Supportive Care ¹ summary for more information about helping children with cancer.

Talking with the Health Care Team

Key Points for This Section

Patients and family caregivers can get ready for medical appointments. Patients and caregivers can make a checklist of specific questions about treatment.

Patients and family caregivers can get ready for medical appointments.

It is helpful for patients and caregivers to plan ahead for doctor visits. The following may help you get the most out of these visits:

• Keep a file or notebook of the patient’s medical information that includes test and procedure dates, test results, and other records. Bring this file with you to the medical appointment.
• Keep a list of names and doses of medicines and how often they are taken. Bring this list with you.
• Use only trusted sources, such as government and national organizations, if you do research about the medical condition. Bring this research with you to discuss with the doctor.
• Make a list of questions and concerns. List your most important questions first.
• If you have a lot to discuss with the doctor, ask if you can:
  • Schedule a longer appointment.
  • Ask questions by phone or email.
  • Talk with a nurse or other member of the health care team. Nurses are an important part of the health care team and can share information with you and your doctor.
• Bring a tape recorder or take notes so that later on you can listen to or review what you discussed.
• Bring a family caregiver or friend to the doctor visit so they can help you remember important information after the visit.

Patients and family caregivers should talk before the appointment to help get ready for possible bad news or information that is different than expected.

Patients and caregivers can make a checklist of specific questions about treatment.

When talking with the doctor, ask specific questions about any concerns you have. If an answer is not clear to you, ask the doctor to explain it in a way that you can understand. Include the following questions about the patient's treatment:

• What medical records should the patient bring to treatment?
• What can the patient do ahead of time to get ready for treatment?
• How long will the treatment take?
• Can the patient go to and from treatment alone? Should someone else go along?
• Can a family member be with the patient during treatment?
• What can be done to help the patient feel more comfortable during treatment?
• What are the side effects of treatment?
• After treatment, what problems should be watched for? When should a doctor be called?
• Who can help with questions about filing insurance claims?

To Learn More About Communication in Cancer Care

For more information from the National Cancer Institute about communication in cancer care, see the following:

• When Someone You Love is Being Treated for Cancer ²
• Young People with Cancer: A Handbook for Parents ³
• Facing Forward: When Someone You Love Has Completed Cancer Treatment ⁴
• When Someone You Love Has Advanced Cancer: Support for Caregivers ⁵
• Cancer Blogs: A New Way for Patients to Communicate ⁶

Get More Information From NCI

Call 1-800-4-CANCER

For more information, U.S. residents may call the National Cancer Institute's (NCI's) Cancer Information Service toll-free at 1-800-4-CANCER (1-800-422-6237) Monday through Friday from 9:00 a.m. to 4:30 p.m. Deaf and hard-of-hearing callers with TTY equipment may call 1-800-332-8615. The call is free and a trained Cancer Information Specialist is available to answer your questions.

Chat online

The NCI's LiveHelp® ⁷ online chat service provides Internet users with the ability to chat online with an Information Specialist. The service is available from 9:00 a.m. to 11:00 p.m. Eastern time, Monday through Friday. Information Specialists can help Internet users find information on NCI Web sites and answer questions about cancer.

Write to us

For more information from the NCI, please write to this address:

NCI Public Inquiries Office

Suite 3036A

6116 Executive Boulevard, MSC8322

Bethesda, MD 20892-8322

Search the NCI Web site

The NCI Web site ⁸ provides online access to information on cancer, clinical trials, and other Web sites and organizations that offer support and resources for cancer patients and their families. For a quick search, use our “Best Bets” search box in the upper right hand corner of each Web page. The results that are most closely related to your search term will be listed as Best Bets at the top of the list of search results.

There are also many other places to get materials and information about cancer treatment and services. Hospitals in your area may have information about local and regional agencies that have information on finances, getting to and from treatment, receiving care at home, and dealing with problems related to cancer treatment.

Find Publications

The NCI has booklets and other materials for patients, health professionals, and the public. These publications discuss types of cancer, methods of cancer treatment, coping with cancer, and clinical trials. Some publications provide information on tests for cancer, cancer causes and prevention, cancer statistics, and NCI research activities. NCI materials on these and other topics may be ordered online or printed directly from the NCI Publications Locator ⁹. These materials can also be ordered by telephone from the Cancer Information Service toll-free at 1-800-4-CANCER (1-800-422-6237), TTY at 1-800-332-8615.

Changes to This Summary (05/08/2009)

The PDQ cancer information summaries are reviewed regularly and updated as new information becomes available. This section describes the latest changes made to this summary as of the date above.

This is a new summary.

Questions or Comments About This Summary

If you have questions or comments about this summary, please send them to Cancer.gov through the Web site’s Contact Form ¹⁰. We can respond only to email messages written in English.

About PDQ

PDQ is a comprehensive cancer database available on NCI's Web site.

PDQ is the National Cancer Institute's (NCI's) comprehensive cancer information database. Most of the information contained in PDQ is available online at NCI's Web site ⁸. PDQ is provided as a service of the NCI. The NCI is part of the National Institutes of Health, the federal government's focal point for biomedical research.

PDQ contains cancer information summaries.

The PDQ database contains summaries of the latest published information on cancer prevention, detection, genetics, treatment, supportive care, and complementary and alternative medicine. Most summaries are available in two versions. The health professional versions provide detailed information written in technical language. The patient versions are written in easy-to-understand, nontechnical language. Both versions provide current and accurate cancer information.

The PDQ cancer information summaries are developed by cancer experts and reviewed regularly.

Editorial Boards made up of experts in oncology and related specialties are responsible for writing and maintaining the cancer information summaries. The summaries are reviewed regularly and changes are made as new information becomes available. The date on each summary ("Date Last Modified") indicates the time of the most recent change.

PDQ also contains information on clinical trials.

A clinical trial is a study to answer a scientific question, such as whether one method of treating symptoms is better than another. Trials are based on past studies and what has been learned in the laboratory. Each trial answers certain scientific questions in order to find new and better ways to help cancer patients. Some patients have symptoms caused by cancer treatment or by the cancer itself. During supportive care clinical trials, information is collected about how well new ways to treat symptoms of cancer work. The trials also study side effects of treatment and problems that come up during or after treatment. If a clinical trial shows that a new treatment is better than one currently being used, the new treatment may become "standard." Patients who have symptoms related to cancer treatment may want to think about taking part in a clinical trial.

Listings of clinical trials are included in PDQ and are available online at NCI's Web site ¹¹. Descriptions of the trials are available in health professional and patient versions. Many cancer doctors who take part in clinical trials are also listed in PDQ. For more information, call the Cancer Information Service 1-800-4-CANCER (1-800-422-6237); TTY at 1-800-332-8615.

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.

Cancer that has spread to other places in the body and usually cannot be cured or controlled with treatment.

Feelings of fear, dread, and uneasiness that may occur as a reaction to stress. A person with anxiety may sweat, feel restless and tense, and have a rapid heart beat. Extreme anxiety that happens often over time may be a sign of an anxiety disorder.

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.

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.

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.

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 amount of medicine taken, or radiation given, at one time.

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).

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.

The National Cancer Institute, part of the National Institutes of Health of the United States Department of Health and Human Services, is the Federal Government's principal agency for cancer research. The National Cancer Institute conducts, coordinates, and funds cancer research, training, health information dissemination, and other programs with respect to the cause, diagnosis, prevention, and treatment of cancer. Access the National Cancer Institute Web site at http://www.cancer.gov. Also called NCI.

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

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 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.

In clinical trials, the step-by-step plan for how patients are to be treated; for example, the drug or type of radiation therapy that is to be given, the method by which it is to be given, the amount of time between courses, and the total length of treatment.

A problem that occurs when treatment affects healthy tissues or organs. Some common side effects of cancer treatment are fatigue, pain, nausea, vomiting, decreased blood cell counts, hair loss, and mouth sores.

Care given to improve the quality of life of patients who have a serious or life-threatening disease. The goal of supportive 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, palliative care, and symptom management.