Advance Care Planning: What Is It and When Should It Be Done?

Have you ever had to make difficult medical decisions for yourself or someone else? Studies show that making medical decisions during serious illness can cause significant stress, and even more so when people need to make medical decisions for someone else.¹ Studies also show that up to 75% of people will need someone to help make medical decisions at some point in their life.²

Yet preparation and guidance for these complex decisions is often lacking. The process of advance care planning and new, free, easy-to-use tools can help.³

What is advance care planning?

Advance care planning is preparation for communication and medical decision-making.⁴ The advance care planning process supports adults at any age and at any stage of health in understanding and sharing their personal values, life goals, and preferences regarding their current and future medical care.⁵

Why is advance care planning important?

Studies show advance care planning can decrease the stress, burden, and grief experienced by those who may need to make medical decisions for others. Such planning also decreases medical providers' moral distress when they know what is important to their patients.⁶

That’s why patients and caregivers, as well as medical providers, think advance care planning is important and they want to talk about it well before a medical crisis.⁷ Advance care planning involves many behaviors, including:

• identifying one's wishes
• discussing one's wishes with family, friends, and clinicians
• documenting one's wishes

However, only about 30% of older adults in the U.S. have documented their medical wishes.⁸

New and improved advance care planning

In the past, you may have heard that advance care planning was only about advance directives—legal forms that allow people to write down their wishes for treatments such as cardiopulmonary resuscitation (CPR).

Although advance directives are important, the new and improved advance care planning process includes much more than that and really focuses on your quality of life. The process has evolved to include preparing people with skills so they know how to identify what is most important for their life and for their health care and to be able to talk with family, friends, and medical providers about their wishes.

At the end of the day, it is about your quality of life and what is most important to you.

What types of advance care planning can you do?

Choose a Medical Decision-Maker: Select the people who will speak for you if you cannot speak for yourself. Also known as a health care proxy, this person or people can make sure doctors know about the care you want.

Share Your Wishes: Think about what is most important in your life and for your medical care, and share this with your family, friends, and medical providers. You can share by phone, video call, a selfie video.

Fill out an Advance Directive: Look for easy-to-read forms that focus on new and improved advance care planning and your quality of life. Give one copy of the form to your family and friends, and have one copy ready for your health care team.

Encourage Family and Friends to Prepare: Encourage your family and friends to prepare too! Ask them if they have a medical decision-maker. Help them fill out an advance directive.

Free, easy-to-use advance care planning program

To help you get stared, you can try the improved advance care planning PREPARE for Your Care program. The free, step-by-step program uses video stories to help you learn how to have a voice in your medical care. The program helps you:

With concrete examples of how to start and have these planning conversations, PREPARE makes it easier for people of all backgrounds to participate in the process. 

Free, easy-to-use advance directives

PREPARE also provides easy-to-read, improved advance directive forms. The forms allow you to name the people you want to help make your medical decisions if you can no longer speak for yourself and focus on your quality of life and what is most important to you. The forms are legal in every US state and available in English, Spanish, and, for a growing number of states, in Chinese. The forms can be printed, or the PREPARE program can walk you through step-by-step to fill them out online. You can share the forms with trusted family and friends and your medical providers so everyone will know what is important to you.

If you have additional questions about advance care planning or advance directive forms, ask your health care providers. Doing advance care planning now is a great way to have a voice in your health care, prepare for medical decision-making, and prepare your family and friends to be your advocate.

Sources

1. McMahan RD, Knight SJ, Fried TR, Sudore RL. Advance care planning beyond advance directives: perspectives from patients and surrogates. J Pain Symptom Manage. 2013;46(3):355-365. Found on the internet at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4111444/

2. Silveira MJ, Kim SY, Langa KM. Advance directives and outcomes of surrogate decision making before death. N Engl J Med. 2010;362(13):1211-1218. Found on the internet at https://www.nejm.org/doi/full/10.1056/nejmsa0907901

3. Sudore RL, Schillinger D, Katen MT, Shi Y, Boscardin WJ, Osua S, Barnes DE. Engaging Diverse English- and Spanish-Speaking Older Adults in Advance Care Planning: The PREPARE Randomized Clinical Trial. JAMA Intern Med. 2018; 178(12):1616-1625. PMID: 30383086; PMCID: PMC6342283. Found on the internet at https://pubmed.ncbi.nlm.nih.gov/30383086/

4. Sudore RL, Fried T. Redefining the “Planning” in Advance Care Planning: Preparing for End-of-Life Decision Making. Ann Intern Med. 2010;153:256-61. PMID: 20713793; PMCID: PMC2935810. Found on the internet at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2935810/

5. Sudore RL, Lum HD, You JJ, Hanson LC, Meier DE, Pantilat SZ, Matlock DD, Rietjens JAC, Korfage IJ, Ritchie CS, Kutner JS, Teno JM, Thomas J, McMahan RD, Heyland DK. Defining Advance Care Planning for Adults: A Consensus Definition From a Multidisciplinary Delphi Panel. J Pain Symptom Manage. 2017 May;53(5):821-832.e1. doi: 10.1016/j.jpainsymman.2016.12.331. Epub 2017 Jan 3. PMID: 28062339; PMCID: PMC5728651. Found on the internet at https://pubmed.ncbi.nlm.nih.gov/28062339/

6. McMahan RD, Tellez I, Sudore RL. Deconstructing the Complexities of Advance Care Planning Outcomes: What Do We Know and Where Do We Go? A Scoping Review. J Am Geriatr Soc. 2021 Jan;69(1):234-244. doi: 10.1111/jgs.16801. Epub 2020 Sep 7. PMID: 32894787; PMCID: PMC7856112. Found on the internet at https://pubmed.ncbi.nlm.nih.gov/32894787/

7. Freytag J, Street RL Jr, Barnes DE, Shi Y, Volow AM, Shim JK, Alexander SC, Sudore RL. Empowering Older Adults to Discuss Advance Care Planning During Clinical Visits: The PREPARE Randomized Trial. J Am Geriatr Soc. 2020 Jun;68(6):1210-1217. doi: 10.1111/jgs.16405. Epub 2020 Mar 10. PMID: 32157684; PMCID: PMC7787080. Found on the internet at https://pubmed.ncbi.nlm.nih.gov/32157684/

8. Approximately one in three US Adults Completes Any Type of Advance Directive for End-of-Life Care. Health Affairs. Vol. 36, No. 7. Found on the internet at https://www.healthaffairs.org/doi/10.1377/hlthaff.2017.0175