For Individuals
“The very least you can do in your life is figure out what you hope for. And the most you can do is live inside that hope. Not admire it from a distance but live right in it, under its roof.”
TAKE ACTION: Start Advance Care Planning
EVERYONE STARTs SOMEWHERE.
The Conversation Project isn’t about filling out Advance Directives or other medical forms. It’s about getting the conversation started. The "Starter Kit" helps you get your thoughts together and begin a conversation with your loved ones about what you or they want for care near the end of life.
A Game that helps you start the conversation.
My Gift of Grace is a game that helps you start the conversation about things that matter most. During each turn, all the players have a chance to share their answers to questions about living and dying well. The games can last anywhere from 20 minutes to three hours or more, depending on comfort and how long a group wishes to play. The game involves a deck of cards and "thank you" chips, and costs $24.95.
Getting started Online with Easy Language and Videos.
PREPARE is a website that uses videos and stories to teach people how to identify their values and goals for medical care and to make medical decisions. The site was designed with and for people from diverse backgrounds to be easy to use. It is available in English and Spanish, written at a 5th grade reading level, and includes voice-overs of all text and closed captioning of all videos.
Ready to make your advance directive?
OurDirectives is an online tool that helps you to choose, share, and maintain your preferences for future medical care. The platform was created by Penn Medicine, but can be used by anyone, anywhere, regardless of where you receive your care. OurDirectives allows you to save your advance directive on a secure server, share your preferences with others online, and access your preferences at anytime. To be legal, your completed advance directive will need to be either witnessed (signed by you and another person) or professionally notarized, which means you will need to print it out.
Advance Directives that can be Electronically Signed.
MyDirectives is a free web-based service that walks you through the process of creating an advance digital directive, which can be electronically signed. The directive is encrypted and stored in their secure database, available to you and your medical providers at any time.
More: Advance Care Planning Resources
State Specific Requirements for Advance Directives.
Caring Info offers state-specific information about advance directives and allows you directly download a copy of your state’s legally compliant advance directive form. Most of the other services that offer advance directives online (OurDirectives, MyDirectives, etc) are compliant with the majority of state requirements and tend to be easier to complete than the more vague and legally worded documents you will find here. You might just want to double check your state-specific AD to be sure you have all the bases covered.
Information about portable medical orders and who uses them.
A POLST Form (Physician Orders for Life-Sustaining Treatment) is made up of a set of medical orders by your doctor that are portable and travel with you between care settings. POLST forms are specifically for patients who are seriously ill and/or frail and are completed very closely with your doctor based on conversations about your goals of care. What makes POLST forms different from advance directives is that they are associated with actual written medical orders, and, as such, they may be more successful in honoring patient wishes for treatment. Not all states use POLST forms.
A toolkit for those who are legally-minded.
This is a list of tools compiled by the American Bar Association (ABA) Commission on Law and Aging. To help you in this process of planning for future medical decisions, this toolkit contains a variety of self-help worksheets, suggestions, and resources. You’ll find things like a worksheet in which you consider conditions worse than death and another sheet where you weigh survival odds. There’s also a quiz to ensure that your health care proxy is getting it right.
General information and more resources about ACP.
National Healthcare Decisions Day aims to help people across the US understand the value of advance healthcare planning.
What is palliative care and is it right for me?
Get Palliative Care provides clear, comprehensive palliative care information for people coping with serious, complex illness. Key features of the site include a Palliative Care Provider Directory of Hospitals, a definition of palliative care and detailed descriptions of what palliative care does and how to get it. It also provides an interactive questionnaire to assist you in determining whether palliative care might be appropriate for you or a loved one.
Looking for something well, written and very comprehensive?
Handbook for Mortals is warmly addressed to all those who wish to approach the final years of life with greater awareness of what to expect and greater confidence about how to make the end of their lives a time of growth, comfort, and meaningful reflection. Written by Dr. Joanne Lynn and a team of experts, this book 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 experience of serious illness affects people, their families, and their friends.
Excellent general information.
Growth House gives you free access to over 4,000 pages of high-quality education materials about end-of-life care, palliative medicine, and hospice care, including the full text of several books. It provides education both for the general public and for health care professionals. The content is provided through syndication arrangements with over forty major health care organizations and publishing houses.