Communication in Cancer Care (PDQ®): Supportive care - Patient Information [NCI]
This information is produced and provided by the National Cancer Institute (NCI). The information in this topic may have changed since it was written. For the most current information, contact the National Cancer Institute via the Internet web site at http://cancer.gov or call 1-800-4-CANCER.
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.
End-of life discussions with the health care team may lead to fewer procedures and better quality of life.
Studies have shown that cancer patients who have end-of-life discussions with their doctors choose to have fewer procedures, such as resuscitation or the use of a ventilator. They are also less likely to be in intensive care, and the cost of their health care is lower during their final week of life. Reports from their caregivers show that these patients live as long as patients who choose to have more procedures and that they have a better quality of life in their last days.
This summary is about communication needs in adults and children with cancer. Section titles show when the information is about children.
The Role of Family Caregivers
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.
For more information see the PDQ summary Family Caregivers in Cancer.
The Role of Parents
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 summary on Pediatric Supportive Care for more information about helping children with cancer.
Talking with the Health Care Team
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: Support for Caregivers
- Young People with Cancer: A Handbook for Parents
- Facing Forward: When Someone You Love Has Completed Cancer Treatment
- When Someone You Love Has Advanced Cancer: Support for Caregivers
Current Clinical Trials
Check NCI's list of cancer clinical trials for U.S. supportive and palliative care trials about communication intervention that are now accepting participants. The list of trials can be further narrowed by location, drug, intervention, and other criteria.
General information about clinical trials is also available from the NCI Web site.
Changes to This Summary (03 / 27 / 2015)
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.
Editorial changes were made to this summary.
About This PDQ Summary
Physician Data Query (PDQ) is the National Cancer Institute's (NCI's) comprehensive cancer information database. 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 come in two versions. The health professional versions have detailed information written in technical language. The patient versions are written in easy-to-understand, nontechnical language. Both versions have cancer information that is accurate and up to date and most versions are also available in Spanish.
PDQ is a service of the NCI. The NCI is part of the National Institutes of Health (NIH). NIH is the federal government's center of biomedical research. The PDQ summaries are based on an independent review of the medical literature. They are not policy statements of the NCI or the NIH.
Purpose of This Summary
This PDQ cancer information summary has current information about communicating with the cancer patient and his or her family. It is meant to inform and help patients, families, and caregivers. It does not give formal guidelines or recommendations for making decisions about health care.
Reviewers and Updates
Editorial Boards write the PDQ cancer information summaries and keep them up to date. These Boards are made up of experts in cancer treatment and other specialties related to cancer. The summaries are reviewed regularly and changes are made when there is new information. The date on each summary ("Date Last Modified") is the date of the most recent change.
The information in this patient summary was taken from the health professional version, which is reviewed regularly and updated as needed, by the PDQ Supportive and Palliative Care Editorial Board.
Clinical Trial Information
A clinical trial is a study to answer a scientific question, such as whether one treatment 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. During treatment clinical trials, information is collected about the effects of a new treatment and how well it works. If a clinical trial shows that a new treatment is better than one currently being used, the new treatment may become "standard." Patients may want to think about taking part in a clinical trial. Some clinical trials are open only to patients who have not started treatment.
Clinical trials are listed in PDQ and can be found online at NCI's Web site. 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).
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National Cancer Institute: PDQ® Communication in Cancer Care. Bethesda, MD: National Cancer Institute. Date last modified <MM/DD/YYYY>. Available at: http://www.cancer.gov/cancertopics/pdq/supportivecare/communication/patient. Accessed <MM/DD/YYYY>.
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Last Revised: 2015-03-27
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