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November 4, 2019

Advance Care Planning—What Should I Know?

Author Affiliations
  • 1Division of Internal Medicine, Department of Medicine, University of California, San Francisco
  • 2Editorial Fellow, JAMA Internal Medicine
JAMA Intern Med. 2020;180(1):172. doi:10.1001/jamainternmed.2019.0005

What Is Advance Care Planning?

Advance care planning involves communicating your values, goals, and preferences about what kind of medical care you would like to receive if you become ill. When you are seriously ill, you may not be able to make decisions about medical care. Other people sometimes need to make these decisions for you. These decisions can be preferences about the types, location, or intensity of treatment that you would want to receive. Talking with your loved ones about your values and wishes, and documenting them in an advance directive will provide others with guidance to make the best decision for you.

A good place to start the conversation is to describe what in life is most important to you. For some people, this is being physically able to do things that they enjoy. For others, this is being mentally alert enough to spend time with family. Although this may feel uncomfortable, many family and friends say they wish their loved ones had spoken with them earlier about their wishes.

Who Will Make Medical Decisions for Me if I Am Too Sick?

The best way to make sure that you receive the type of medical care that is in agreement with your values is to complete an advance directive. An advance directive is a document that contains your preferences about medical treatment. Physicians will use this to guide the type and intensity of treatments that they offer. Advance directives often include preferences about things including cardiopulmonary resuscitation, life support, and artificial nutrition. In an advance directive, you will identify a medical decision maker. This should be a family member or friend who knows you and your values and wishes well. Your physicians may contact your medical decision maker with questions about the types of medical treatment that you would want to receive if you are too ill to express your own wishes.

If I Am in Good Health, Do I Need an Advance Directive?

It is recommended that everyone create an advance directive and choose a designated medical decision maker in case of an emergency. The best time to make an advance directive is when you are in good health and fully able to express your wishes.

How Do I Make an Advance Directive?

Your primary care physician can help provide you with guidance and resources to prepare your advance directive. There are many internet-based resources that make it easier to prepare your advance directive. A good place to start is the PREPARE For Your Care website. Discussing your preferences with your loved ones and your physician is an important part of the process. In addition to an advance directive, consider completing a provider order for life-sustaining treatment (also called a medical order for life-sustaining treatment, physician order for scope of treatment, or medical order for scope of treatment) form. This document provides instructions to emergency medical workers in the event of a serious medical event.

Can I Change My Advance Directive?

If you are of sound mind, you can change your advance care planning documents at any time.

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Section Editor: Michael Incze, MD, MSEd.
The JAMA Internal Medicine Patient Page is a public service of JAMA Internal Medicine. The information and recommendations appearing on this page are appropriate in most instances, but they are not a substitute for medical diagnosis. For specific information concerning your personal medical condition, JAMA Internal Medicine suggests that you consult your physician. This page may be photocopied noncommercially by physicians and other health care professionals to share with patients. To purchase bulk reprints, email reprints@jamanetwork.com.
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Article Information

Published Online: November 4, 2019. doi:10.1001/jamainternmed.2019.0005

Correction: This article was corrected on December 2, 2019, to fix typographical errors regarding use of the terms advance care planning and advance directive.

Conflict of Interest Disclosures: None reported.

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    1 Comment for this article
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    Patient Page on Advance Care Planning
    Judith Rietjens, PhD | Dept. of Public Health, Erasmus MC Rotterdam
    The article states that "The best way to make sure that you receive the type of medical care that is in agreement with your values is to complete an advance directive". This is a rather old-fashioned approach of advance care planning. A more modern approach is to focus on value identification and the communication of these values to relatives and healthcare professionals. While this element of advance care planning is also mentioned in the patient page, I feel it deserves more attention than the completion of an advance care directive (as the latter is an optional part of advance care planning). What advance care planning exactly is, and how people can engage in it, is recently described in our report of an international consensus study, that also included patient representatives (Rietjens, Sudore et al, the Lancet Oncology 2017).

    The patient page also "recommends that everyone creates an advanced directive [..]. The best time to make an advanced directive is when you are in good health and fully able to express your wishes". This statement needs more nuance too, and more research, because we know people's preferences may change, not everyone is open to engage in ACP so early, and ACP may need adaptation to be of use for people in other socio-legal / cultural settings (such as Asia, where medical decision-making tends to be more family-centered).

    A more nuanced narrative is important. In the end, we are all committed to making sure that people receive care and treatment that fits their values.
    CONFLICT OF INTEREST: None Reported
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