Advance Care Planning

Advance care planning is an important step toward making sure you get the medical care you want when you are unable to speak for yourself and doctors and family members are making decisions for you.  These resources will help you think through how to choose your healthcare proxy and complete your living will as well as how to complete an advance healthcare directive and communicate with your medical team and family.  None of these resources is specific to Parkinson's disease.

Downloadable Documents | Online Resources | Podcasts & Webinars | Books, Games & Movies

Downloadable Documents

Age Page: Getting Your Affairs In Order

Published by the National Institute on Aging

A 4-page printable PDF uses a story format to understand when and why having all your important papers up to date and where your family can find them.  It itemizes what 'important papers' are and lists several organizations that can help, either directly or by helping you find a trustworthy lawyer.  This information is expanded with links to more information and question & answers on this webpage.

Five Wishes

Published by Aging with Dignity

An easy-to-use legal advance directive document written in everyday language that is valid in most states as published and available for as little as $5.  Five Wishes helps all adults consider and document how they want to be cared for at the end of life, considering medical, personal, emotional and spiritual aspects.  It also helps to guide and structure discussions with family and physicians, making conversations easier.

Free Advance Directive Forms

Published by AARP

Select your state to find free, printable (PDF), advance directive forms for each state. You’ll find instructions on how to fill out the forms at each link.

Looking Ahead with Parkinson's

Published by the Michael J. Fox Foundation, January 5, 2021

Movement disorder experts, people living with Parkinson’s, and care partners offer food for thought in determining what's important to you when preparing your advance healthcare directive in this step-by-step guide, with further online resources to help you complete your directive, plan for your financial future, and contribute to Parkinson's research.

My End-of-Life Decisions: An Advance Planning Guide and Toolkit

Published by Compassion & Choices, July 1, 2020

This 36-page booklet helps you think about what matters most to you and who to choose for your as your healthcare proxy.  It guides you through talking with healthcare providers and your family, and finally through putting your wishes into a document that your family and medical institutions will abide by.

Toolkit for Health Care Advance Planning

Published by the American Bar Association, 2020

Good advance planning for health care decisions is, in reality, a continuing conversation—about values, priorities, the meaning of one’s life, and quality of life. To help you in this process, this tool kit contains a variety of self-help worksheets, suggestions, and resources. There are 8 tools in this 20-page booklet (PDF). The tool kit does not create a formal advance directive for you. Instead, it helps you do the much harder job of discovering, clarifying, and communicating what is important to you in the face of serious illness. 

Tools for Planning

Published by End of Life Washington

While the advance directive document available from End of Life Washington is specific to Washington state, this website has downloadable (PDF) values worksheet and healthcare decisions IQ test to help anyone, anywhere, make end-of-life choices, pages that explain specific end-of-life options and downloadable (PDF) pages with general information about advance directives and the process for completing them.

Online Resources

Advance Care Plan Discussion Guide

Published by My Directives

A list of questions to ask yourself and things to discuss with your family and friends ahead of a medical crisis.  Having these difficult conversations will help you determine your own preferences for medical care and whom to appoint as your healthcare agent.  Includes a list of questions to ask your doctor so you understand more about artificial nutrition and hydration, CPR, organ donation, etc. before completing your advance directive.

Advance Care Planning

Published by The Conversation Project

The numerous links on this page explore a variety of resources to help make, discuss and document future healthcare wishes and decisions for your self and your loved ones.

Advance Care Planning Tools and Resources List

Published by the Coalition for Compassionate Care of California

Numerous links to conversation tools, advance directive forms, advance directive FAQs and instructions, and information about POLST, healthcare agents, decision-making capacity, CA healthcare decision law fact sheet, medicare reimbursement for advance care planning, and more!  Some of the resources on this page are in Spanish.

Advance Directives

Published by the National Hospice and Palliative Care Organization

Links to nine informative pages that explain advance directives, choosing your healthcare agent, downloading your state's advance directive, preparing and storing your advance directive, and digital advance directive services.

Advance Directives and Parkinson's

Published by the Davis Phinney Foundation

This short webpage explains what an advance directive is, provides a values worksheet to help you think through what's important to you at the end-of-life, and lists six simple steps to walk you through the process of creating and sharing your advance directive - no lawyer necessary.

Communicate Your End-of-Life Wishes

Published by the National Hospice and Palliative Care Organization

Links to seven informative pages that explain the importance of talking with your loved ones about your end-of-life wishes with tips for how to hold those difficult conversation, how to talk with your healthcare providers, and how to talk with others about their end-of-life wishes.

Don't Let Fear Stop You From End-of-Life Planning

Published by Forbes, January 29, 2017

This short article discusses the many reasons we don't discuss, prepare for, or share our end-of-life preferences.  It provides links to resources that can help overcome those obstacles.

End-of-Life Planning

Published by Our Life Celebrations

This blog post covers a lot of ground, including why you want an end-of-life plan, some tools to help you think it through, how to start the conversation with your doctor and family, what documents you need to complete, where to keep those documents so they can be found, and making funeral arrangements.

How to Prepare Financially for Your Death (No Matter How Young You Are)

Published by NerdWallet, January 17, 2017

The financial steps that will ease the path for your loved ones if you die.

Online Advance Care Planning

Published by My Directives

A free digital advance care planning platform that allows users to record their medical treatment wishes, palliative and hospice care preferences, organ donation status, and other critical information. Upload, store and share already completed advance directives, portable medical orders like POLST or MOLST forms, or the U.S. Veterans Administration Form. Or use thoughtful questions, helpful tools and options that educate and guide users through the process. Options even include audio and video messages to your loved ones or healthcare team.

Prepare For Your Care

Published by The Regents of the University of California

Prepare is a step-by-step program to help you have a voice in your medical care, talk with your doctors, and fill out an advance directive form to put your wishes in writing.  

Stanford Letter Project

Published by Stanford Medicine

Free letter templates specifically designed to help you voice the key information needed to help you write to your doctor, your friends, and your family about what matters most to you at life's end.  Without making your wishes known, family members will struggle to guess what you would want, and ineffective medical procedures may be done causing you to suffer and costing your estate.  Use your letters to complete an advance directive in minutes.

What is Estate Planning?

By Retire Guide, October 26, 2020

This easy to read article explains why one should make an estate plan, the elements that should be included in a good estate plan, and some mistakes to avoid.

Podcasts & Webinars

Caregiving at End-of-Life

By UT Health San Antonio School of Nursing, September 13, 2021

As your loved one enters their end of life their needs change, impacting the demands you will face as their caregiver.  This hour-long webinar by Debbie James, MSN, RN, discusses how best to care for yourself and you loved one as you enter this stage of caregiving.  She explains the difference between palliative and hospice care, dispells myths about pain management, how to prepare for a 'good death', and what to expect at end of life.

End-Of-Life Planning Is A 'Lifetime Gift' To Your Loved Ones

By National Public Radio, June 30, 2020

This 21-minute episode of the Life Kit podcast discusses the costs and benefits of planning for the end of life.  Included are six tips to get you started and ensure you include everything that's important to you.

Let's Talk About Death


In this TED Talk by Peter Saul, an emergency doctor, asks us to think about the end of our lives -- and to question the modern model of slow, intubated death in hospital. He shares two big questions can help you start this tough conversation with your family.

Take Charge! Tips for Advance Care Planning

By Family Caregiver Alliance, February 24, 2021

In this 1-hour talk, author Mary Matthiesen shared why it's important to complete an advance healthcare directive, the four steps involved, the legal parts of an advance directive, and how to complete a Physician Order for Life Sustaining Treatment (POLST) if you have a critical health issue.

Books, Games & Movies

Being Mortal

By Atul Gawande, October 7, 2014

In Being Mortal Gawande, a practicing surgeon, shares eye-opening research and rich storytelling about his own familiy and patients.  He asserts that medicine done properly can comfort and enhance our experience even to the end, providing not only a good life but also a good end.

Defining Hope

By Carolyn Jones, November 2017

Documentary Defining Hope, by Carolyn Jones, is a story about people weighing what matters most at the most fragile junctures in life, and the nurses who guide them. It follows patients with life-threatening illness as they make choices about how they want to live, how much medical technology they can accept, what they hope for and how that hope evolves when life is threatened. It is optimistic and reminds us that we have choices in how we die.

Rent for $3.99 on Amazon or iTunes.

The Go Wish Game

By Coda Alliance

Go Wish cards help you find words to talk about what is important if you were to be living a life that may be shortened by serious illness.  Sorting the cards alone can help you determine your priorities before completing an advance directive.  Playing the game with relatives or best friends can help you learn how you can best comfort your loved ones when they need you most. 

Handbook for Mortals: Guidance for People Facing Serious Illness

By Joanne Lynn, Janice Lynn Schuster, and Joan Harrold, June 3, 2011

Through personal stories Handbook for Mortals provides equal measures of practical information and wise counsel. Readers will learn what decisions they will need to face, what choices are available to them, where to look for help, how to ease pain and other symptoms, what to expect with specific diseases, how the health-care system operates, and how the entire experience affects dying persons, their families, and their friends.

Talking About Death Won't Kill You

By Virginia Morris, March 1, 2001

Talking About Death Won't Kill You is an argument for facing fears. It is an argument for taking the thought of our death out of the shadows of denial and preparing, with our loved ones, the living wills, medical directives, value history forms, and even simple letters that will explain what it truly is we want when the time comes.

Last updated December 2023 by Stanford Parkinson's Community Outreach