Talking About Advance Care Planning

While sudden changes in your life, such as you or a loved one being involved in an accident or becoming seriously ill, can be hard to prepare for emotionally, there are ways to ensure that you receive the type of compassionate care you want – when you need it most.

The Coalition for Compassionate Care of California (CCCC) encourages you to talk to your loved ones now about your wishes for medical care and treatment in the event that you are unable to speak for yourself. Planning ahead for future medical needs is the best way to ensure that your wishes will be respected.

If you’re not sure how to have these difficult conversations, don’t know where to begin or what form to use, here are some resources that can assist you:

Conversation Tools

Conversation Guide

Conversation Guide
This guide offers suggestions on how to raise the issue, responses to concerns your loved one might express and questions to ask.

Finding Your Way: Medical Decisions When They Count Most

For those who are starting the advance care planning process or considering whether to initiate or withdraw life sustaining treatment. Also available in Spanish.
Order in bulk from CCCC’s online store.

Go Wish Cards

An easy, entertaining way to think and talk about what’s important to you if you become seriously ill.
Order in bulk from CCCC’s online store or play Go Wish online.

Mrs. Lee’s Story

Mrs. Lee’s Story

An introduction to end-of-life issues that concern Chinese elders and their families. Brochure includes both Chinese and English text.
Order in bulk from CCCC’s online store.

Conversation Tools

HelpfuPhrases for Having the POLST Conversation / Frases útiles para usar en las conversaciones sobre POLST

This guide walks healthcare providers through the most commonly used phrases in walking a patient and family through conversations about the Physician Orders for Life-Sustaining Treatment form (POLST). The guide includes phrases and questions in English and Spanish.

The Conversation Project Starter Kit

There’s also a toolkit offered through The Conversation Project that includes resources and tips for getting your thoughts together before having the conversation.

Group Discussion Guide
Talking it Over
Talking it Over is a guide to facilitating discussion among informal groups – such as congregations, community organizations, classes or senior groups – to explore personal views about end-of-life care. Though this discussion guide can be used by experienced facilitators and healthcare professionals, it is designed and written so that anyone can use it.
Advance Directive Forms

Take Note: Change in law may affect advance directives notarized after Jan. 1, 2015

Advance Directive FAQs

Answers to the most common questions about Advance HealthCare Directives.

Advance Health Care Directives FAQ web page
Advance HealthCare Directives FAQ PDF

Advance HealthCare Directives FAQ translated into Spanish PDF

Advance Healthcare Directives Factsheet

There are a number of forms and resources available to help you and your loved ones document your wishes for end-of-life care, and to designate a surrogate decision-maker in the event that you are unable to advocate for yourself. You can learn more about Advance Healthcare Directives in the downloadable factsheets below:

Basic Advance Directive

Available in English, Spanish, or Chinese, this form enables you to give instructions about your own healthcare treatment, your end-of-life wishes, and to appoint a healthcare power of attorney.

Easy to Read Advance Directive

Written in plain language, this form is intended to be read and understood easily, even by those who are unable to grasp complex legal language or have limited reading skills. The form is available in the following languages:

  • English
  • Armenian with English translation
  • Chinese with English translation
  • Farsi with English translation
  • Khmer with English translation
  • Korean with English translation
  • Russian with English translation
  • Spanish with English translation
  • Tagalog with English translation
  • Vietnamese with English translation

Click here to download any of these versions.

With Words, Pictures and Symbols

Thinking Ahead is an advance directive workbook and DVD created by CCCC. This advance directive contains words, symbols and pictures that facilitate discussion and decision-making regarding values, goals and treatment preferences at the end of life. The video serves as an instruction manual, containing vignettes that illustrate in simple, graphic format the purpose and use of the materials.

Although it was originally developed for use by persons with developmental disabilities, Thinking Ahead has proven to be a useful tool for all persons in need of articulating treatment preferences at the end of life. Available in English, Spanish, Chinese, and Korean. Learn more about all of the Thinking Ahead materials.

American Bar Association Advance Directive

Giving Someone a Power of Attorney for your Health Care: A Guide with an Easy-to-Use, Legal Form for All Adults. Free.

Five Wishes

Available through Aging with Dignity, this easy-to-use, plain-language workbook helps you express your wishes for end-of-life care in a living will that meets the legal requirements in most states. $5.00 per copy.

Advance Healthcare Directive Kit

Available through the California Medical Association in English and Spanish. $6.00 per kit.

Out-of-State Advance Directive Forms

Available through Caring Connections, this site offers state-specific advance directive forms for download.

Healthcare Agents and Surrogate Decision Makers

Choosing a Healthcare Agent

Choosing A Healthcare Agent
This simple guide helps you determine what to consider when you are selecting a healthcare agent to make decisions you would if you were able.

Choosing A Healthcare Agent translated into Spanish

Help for Healthcare Agents

Help for Healthcare Agents
Making medical decisions for your loved one can be a challenge. This easy-to-read companion piece is here to help you serve as a healthcare agent.

Help for Healthcare Agents translated into Spanish

Decision-Making Capacity

Decision-Making and Capacity

Guide for Assessing Medical Decision‐Making Capacity
The patient with decision-making capacity is the appropriate decision-maker unless the patient has delegated that authority to another.

Determining the Appropriate Decision-Maker
Decision making capacity will be determined by the primary physician or supervising health care provider unless the patient has directed that another make that determination in a written advance directive. Capacity may vary and the patient may have capacity for some decisions and not for others. Patients should be allowed to make as many of the health care decisions as possible.

Laws & Regulation

California Law

California’s Health Care Decisions Law Fact Sheet
This fact sheet is an overview of some of the key elements of the Health Care Decisions Law of 2000. Additional details can be obtained through the resources listed at the end.

Advance Care Planning Tools & Resources List

A collection of useful advance care planning related tools and resources for health care providers and consumers.

Training and Information

Coalition for Compassionate Care of California Trainings/Curriculum
Widely used curricula supporting culturally congruent care (Building Bridges), Advance Care Planning and Physician Orders for Life Sustaining Treatment (POLST). Resources available include guides for starting an ACP conversation, and information for professionals and consumers.

CSU Institute for Palliative Care 
Effective Advance Care Planning: Skill Building for Everyone
 (online coursework series) 
Advance Care Planning: A Guide for Health Care Professionals
 (Guide)

Prepare for Your Care
A web site designed to empower people to make decisions, talk with providers and get medical care that is right for them. Prepare for Your Care walks people through the basic steps in advance care planning and provides prompts and videos to help them get started.

Consumer Reports (Advance Care Planning)
Free, downloadable patient ACP booklet available in English and Spanish.

Respecting Choices
Evidence-informed training program and resources to promote person centered care and ACP.

Caring Connections
Caring Connections is a program of the National Hospice and Palliative Care Organization (NHPCO) that provides free resources and information to help people make decisions about end-of-life care before a crisis. There are links to Advance Directives for all 50 states.

National Institute on Aging
General material, definitions and explanations for Advance Care Planning. Printable Wallet Card. Links to other resources.

American College of Physicians
Document on Advance Care Planning Implementation for Practices

American Bar Association
Tool kit and hand-outs for approaching and completing Advance Directives. Includes sections on “How to Choose an Agent” and “Starting the Conversation,” plus links to state specific Advance Directives.


Conversation Tools & Guides

Chinese American Coalition for Compassionate Care (Heart to Heart®)
Heart to Heart® cards are a bilingual (Chinese/English) communication activity designed to make it easier to understand what people might prefer when their lives are threatened by injury or disease.

Go Wish Cards
Go Wish cards from the Coda Alliance offer a non-threatening way to explore people’s preferences for care when seriously ill.

The Conversation Project
Stories for sharing, tools, and tips for initiating Advance Care Planning. The primary focus of the Conversation Project and their material is to help people overcome barriers to planning and to start talking to family and loved ones.

Advance Care Planning Conversation Guide 
A guide from the Coalition for Compassionate Care of California

The Conversation Project Toolkit, a Discussion Guide
Resources and assistance for people who want to talk with their loved ones about end of life wishes.

Ariadne Labs (Serious Illness Care)
Ariadne Labs consolidates evidence-supported videos, tools and resources to support decision making for the seriously ill.

BeginTheConversation.org
Learn how to take the first steps to begin the conversation. Work book and toolkit available. Information for community engagement and empowerment.

Common Practice (Hello/Gift of Grace)
Website has information on the evidence-based conversation game Hello (formerly Gift of Grace) to assist people in discussing what matters most to them.

American Society of Clinical Oncology (ASCO Answers: Advanced Cancer Care Planning)
A free downloadable decision-making guide for patients and families facing serious illness with information and resources about care options, communication tips and coping at end of life.

A Physician’s Guide to Talking About End-of-Life Care 
Article: J Gen Intern Med. 2000 Mar; 15(3): 195–200.

A Culturally Responsive Approach to Advance Care Planning: A Reflection
Article: Managed Health Care Connect


Advance Care Planning Forms

Five Wishes Advance Directive
The non-profit Aging with Dignity provides people with the practical information, advice and legal tools including the popular, low cost and easy to use Five Wishes Advance Directive.

Prepare for Your Care: Easy to Read Advance Directive

Giving Someone a Power of Attorney for Your Health Care: A Guide with an Easy-to-Use Legal Form for All Adults
Prepared by The Commission on Law and Aging, American Bar Association.

Basic Advance Care Planning Form

California Physician Orders for Life Sustaining Treatment (POLST) Form
Available in English and multiple translations.

National POLST (Physician Orders for Life-Sustaining Treatment) Paradigm
Information and patient resources on each state’s POLST efforts.


Videos

California Health Care Foundation: Advance Care Planning, Death & Dying
Five brief videos depict people as they reflect on their experiences with advance care planning, death and dying.

Dr. Angelo Volandes: ACP Decisions
ACP Decisions Tools and videos by Dr. Angelo Volandes


Billing for Advance Care Planning

Billing for Advance Care Planning Conversations
Web-based training for health providers presented by CSU Institute for Palliative Care and the Coalition for Compassionate Care of California.

Guide to Medicare Advance Care Planning Codes
Medicare Learning Network

2016 Medicare Physician Fee Schedule, Final Rule
Medicare Physician Fee Schedule policy governing ACP services, Pages 70955–70959

Billing for Advance Care Planning – FAQs
Coalition for Compassionate Care of California


Research/Reports/Studies

Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life
2014 Institute of Medicine consensus report on end-of-life care in the United States

Dying in California: A Status Report on End-of-Life Care in California
California Health Care Foundation

Conversation Starters: Research Insights from Clinicians and Patients on Conversations About End-of-Life Care and Wishes
John A. Hartford Foundation, Cambia Health Foundation and California Health Care Foundation.

Conversation Stopper: What’s Preventing Physicians from Talking with Patients about End-of-Life and Advance Care Planning?
John A. Hartford Foundation, Cambia Health Foundation and California Health Care Foundation.

Final Chapter: Californians’ Attitudes and Experiences with Death and Dying (2012)
Lake Research Partners and the Coalition for Compassionate Care of California

Communication About Serious Illness Care Goals: A Review and Synthesis of Best Practices
Bernacki RE, Block SD, for the American College of Physicians High Value Care Task Force. JAMA Intern Med.2014;174(12):1994-2003. doi:10.1001/jamainternmed.2014.5271

Value Snapshots | Advance Care Planning Reduces Health Care Costs (2015)
Kathleen Kerr