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Managing Cancer Care

What Is Informed Consent?

Informed consent is a process of communication between you and your health care provider that often leads to agreement or permission for care, treatment, or services. Every patient has the right to get information and ask questions before procedures and treatments. If adult patients are mentally able to make their own decisions, medical care cannot begin unless they give informed consent. 

The informed consent process makes sure that your health care provider has given you information about your condition along with testing and treatment options before you decide what to do.

This information can include:

  • The name of your condition
  • The name of the procedure or treatment that the health care provider recommends
  • Risks and benefits of the treatment or procedure
  • Risks and benefits of other options, including not getting the treatment or procedure

Signing informed consent means

  • You have received all the information about your treatment options from your health care provider.
  • You understand the information and you have had a chance to ask questions.
  • You use this information to decide if you want to receive the recommended treatment option(s) that have been explained to you. Sometimes, you may choose to receive only part of the recommended care. Talk to your health care provider about your options.
  • If you agree to receive all or some of the treatment options, you give your consent (agree) by signing a consent form. The completed and signed form is a legal document that lets your doctor go ahead with the treatment plan.

The main purpose of the informed consent process is to protect the patient. A consent form is a legal document that ensures an ongoing communication process between you and your health care provider. It implies that your health care provider has given you information about your condition and treatment options and that you have used this information to choose the option that you feel is right for you.

The way in which your treatment options must be given to you (for example, verbally or in writing) may be listed in your state's laws. Your health care provider works with you to figure out the best way to give you the information you need. The provider may choose to use methods other than a verbal discussion or a written document, such as videos, interactive computer modules, audio files or other methods to help you understand the information better. Be sure you understand all the information given, even if it means going over it many times or asking your provider to explain it in different ways.

Can I change my mind after I've signed the consent?

Yes, you can change your mind at any time, even if you have already started treatment. Let your health care provider know of your wishes.

What if I don't want the treatment being offered?

You have the right to refuse any and all treatment options. You may also choose other treatment options that have been presented to you by your health care provider, even if they are not as well proven as the one your health care provider recommends. You may also refuse part of the treatment options, without refusing all care.

For example, you may choose to refuse surgery, but still wish to be treated for pain. In this case, it may be up to you to find another health care provider or facility to treat you with such an approach if your health care provider is not comfortable with it.

If you have decided to refuse treatment or diagnostic tests, your health care provider may tell you about the risks or likely outcomes of this choice, so you can make an informed refusal (meaning, you understand what could happen to your health by refusing the recommended treatment but you still don't want the treatment). In this case, you might be asked to sign a form to state that you received this information and that you still chose not to be treated.

What is shared decision-making?

Shared decision-making is actually part of the informed consent process and allows patients to play an active role in making decisions that affect their health. In shared decision-making, the health care provider and patient work together to choose tests, procedures, and treatments, and then to develop a plan of care. As described by the informed consent process, the provider gives the patient information about their condition and the pros and cons of all the treatment options. The patient then has a chance to ask questions and read more about the options. The patient also tells the health care provider what their preferences, personal values, opinions and such are about their condition and treatment options. The health care provider should always respect the patient's preferences and goals, and use them to help guide the patient's treatment recommendations. This type of decision-making is especially helpful when there is no single "best" treatment option.

What if I want the doctor to make the decisions about my care?

Treatment cannot be given without your consent, Unless care and treatment are needed in an emergency and you are unable to give consent. However, you have the right to refuse information and treatment. Or, in advance, you can assign a person to make decisions for you through an advance directive or other legal document. You can also ask for minimal information and trust your health care provider to make decisions for you. At the same time, informed consent laws do not allow a health care provider to keep a diagnosis from the patient, even at the family's request.

The American Cancer Society medical and editorial content team

Our team is made up of doctors and oncology certified nurses with deep knowledge of cancer care as well as journalists, editors, and translators with extensive experience in medical writing.

Agency for Healthcare Research and Quality. Strategy 61: Shared decisionmaking. 2017. Accessed at https://www.ahrq.gov/cahps/quality-improvement/improvement-guide/6-strategies-for-improving/communication/strategy6i-shared-decisionmaking.html, on February 19, 2019.

Centers for Medicare & Medicaid Services (CMS). Revisions to the hospital interpretive guidelines for informed consent. 2007. Accessed at https://www.cms.gov/Medicare/Provider-Enrollment-and-Certification/SurveyCertificationGenInfo/downloads/SCLetter07-17.pdf on February 19, 2019.

Katz AL, Webb SA, Committee on Bioethics. Informed consent in decision-making in pediatric practice. AAP News & Journals; 2016; 138(2):e1-e13.

MedlinePlus. Informed consent-adults. 2017.Accessed at https://medlineplus.gov/ency/patientinstructions/000445.htm. on February 19, 2019.

Spruit SL, Van de Poel I, Doorn N. Informed consent in asymmetrical relationships: An investigation into relational factors that influence room for reflection. US National Library of Medicine National Institutes of Health; 2016;10:123-138.

Storm C, Casillas J, Grunwald H, Howard DS, McNiff K, Neuss MM.  Informed consent for chemotherapy: ASCO member resources. Journal of Oncology Practice; 2008 (or 2016);6:289-295.

The Joint Commission, Division of Health Care Improvement. Informed consent: More than getting a signature. 2016. Accessed at https://www.jointcommission.org/assets/1/23/Quick_Safety_Issue_Twenty-One_February_2016.pdf on February 19, 2019.

Along with the American Cancer Society, other sources of information include:

American Bar Association
Website: https://www.americanbar.org/

Your community’s Legal Aid Society
If your income is limited, look in your phone book or check the online information at the American Bar Association website; click on your state and look for Free Legal Help

Your state or city Bar Association
Check your local phone book or find it online at the American Bar Association

American Hospital Association
Website: www.aha.org

Read their Patient Care Partnership brochure online for more on patients’ rights and responsibilities in the hospital. Also available in Spanish, Arabic, Chinese, Tagalog, Vietnamese, and Russian

Cancer Legal Resource Center

Toll-free number: 1-866-843-2572 
Email: CLRC@drlcenter.org (please read email notice)

Website: www.cancerlegalresources.org

Offers free, confidential information and resources on cancer-related legal issues

National Cancer Institute
Toll-free number: 1-800-4-CANCER (1-800-422-6237)
TTY: 1-800-332-8615
Website: www.cancer.gov

Offers current information about cancer and cancer treatment, living with cancer, clinical trials, and research

*Inclusion on this list does not imply endorsement by the American Cancer Society.

Last Revised: May 13, 2019

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