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Managing Cancer Care

What Is an Advance Directive?

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An advance directive is a legal document that explains how you want medical decisions about you to be made if you cannot make the decisions yourself. An advance directive is used to guide your health care team and loved ones when they need to make these decisions or to decide who will make decisions for you when you can't. These medical decisions might include special actions or emergency care from your health care team. An advance directive can help you think ahead of time about what kind of care you want.

Advance directives only apply to health care decisions and do not affect financial or money matters. The laws around advance directives are different from state to state. Talk to your health care provider (or your lawyer) about filling out your advance directive when you are still healthy, in case you become too ill or are unable to make medical decisions for yourself in the future.

The Patient Self-Determination Act

The 1990 Patient Self-Determination Act (PSDA) encourages everyone to decide ahead of time about the types and extent of medical care they want to accept or refuse if they become unable to make those decisions due to illness.

The PSDA requires hospitals, skilled nursing facilities, home health agencies, hospice programs, and Health Maintenance Organizations (HMOs):

  • To give patients information on their state laws about their rights to make decisions about their care.
  • To find out if patients have an advance directive.
  • To recognize the advance directive and honor the patient's wishes.
  • To never discriminate against patients based on whether they have filled out an advance directive or not.

Health care facilities can't require patients to have advance directives: It is the patient's choice.

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.

American Hospital Association (AHA). Put it in writing. 2012. Accessed at https://www.aha.org/system/files/2018-01/putitinwriting.pdf on February 19, 2019.

Cancer.net. Putting your health care wishes in writing. 2018. Accessed at https://www.cancer.net/navigating-cancer-care/advanced-cancer/putting-your-health-care-wishes-writing 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.

Congress.gov. H.R. 4449-Patient Self Determination Act of 1990.  1990. Accessed at https://www.congress.gov/bill/101st-congress/house-bill/4449, on February 19, 2019.

National Cancer Institute (NCI). Advance directives. 2015. Accessed at https://www.cancer.gov/about-cancer/managing-care/advance-directives, on February 19, 2019.

National Hospice and Palliative Care Organization (NHPCO). What are advance directives? Accessed at http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3285 on February 19, 2019.

 

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

Aging with Dignity
Toll-free number: 1-888-5WISHES (1-888-594-7437)
Website: www.agingwithdignity.org

On this website, you can learn about and buy the Five Wishes advance directive and planning guide, which is available in 26 languages and in Braille.

American Bar Association – Consumer’s Tool Kit for Health Care Advance Planning 
Website: https://www.americanbar.org/groups/law_aging/resources/health_care_decision_making/

Free online tool kit includes worksheets, tips, guides, and resources to help you think and talk about your values, priorities, the meaning of your life, and your quality of life to help you put together the best advance directive for you

    Caring Connections, from the National Hospice and Palliative Care Organization (NHPCO)
    Toll-free number: 1-800-658-8898 (answers as “End-of-Life Consumer Helpline”)
    Website: What are Advance Directives? | CaringInfo

    Website lists each state's’ requirements for advance directives and has free downloads of “State-Specific Advance Directives” with forms and instructions for each state. It also has tips on selecting your health care agent, and preparing and storing your advance directive.

      Compassion and Choices Toll-free number: 1-800-247-7421

      Website: www.compassionandchoices.org

      Offers worksheets, forms, and help in completing advance directives, and in talking to families, friends, and health care providers about your health care wishes

         

          Cancer Legal Resource Center
          Toll-free number: 1-866-843-2572 (1-866-THE-CLRC)

          Email: CLRC@drlcenter.org (please read email notice on
          Website: www.cancerlegalresources.org

          Offers free and low-cost legal information and referrals to people with cancer. If no one answers the phone, leave a number and message for call back.

           

          Has information on advance planning and advance directives

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

             

            Last Revised: May 10, 2019

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