Additional Resources For Advance Directives

Recommended National Resources 

Compassion & Choices 

The country’s oldest nonprofit dedicated to helping improve care and expand choices at end of life, Compassion & Choices provides a number of helpful tools, including the My End of Life Decisions: An Advance Planning Guide and Toolkit, Dementia Values & Priorities Tool and other end of life planning resources, which help you define your priorities and clarify your wishes about end of life care. You can find all of these resources on the Compassion & Choices website. 

The American Bar Association

The American Bar Association is a comprehensive resource for consumers and legal professionals on many issues related to aging and end of life. Through the ABA Commission on Law and Aging, the organization seeks to strengthen and secure the “legal rights, dignity, autonomy, quality of life and quality of care of older adults.” As part of this initiative, it offers resources for consumers on healthcare decision making.

To learn more, contact

Commission on Law and Aging
American Bar Association
1050 Connecticut Ave. NW, Suite 400
Washington, DC 20036

E-mail: aging@americanbar.org
Phone: (202) 662-8690

Online Resources

The Conversation Project 

The Conversation Project is an organization dedicated to helping people begin meaningful conversations about their end-of-life goals. Its Conversation Starter Guide is an easy-to-follow guide that walks you through the process — from preparing to have the conversation to actually speaking with your loved ones about end of life. It also offers information on how to choose a healthcare proxy and write a living will. 

CaringInfo

A resource offered by the National Hospice and Palliative Care Organization, CaringInfo is a comprehensive guide for those needing information about end of life. The website includes information on hospice, palliative care, caregiving and advance directives, and answers important questions such as how to speak with your family about goals of care.

PREPARE for your care

Developed by Dr. Rebecca Sudore, M.D., a geriatrician, palliative care physician and professor of medicine at the UCSF School of Medicine in San Francisco, California, PREPARE is an online tool that walks you through the steps necessary to develop a meaningful advance healthcare directive that accurately reflects your wishes. The website is free to use, and also allows users to download an easy-to-read advance directive for all 50 states. 

The Stanford Letter Project

The Stanford Letter Project is a free website from Stanford Health in Palo Alto, California, that offers three tools for consumers to convey their values, preferences and healthcare goals to their loved ones and care providers. They include:

• The “What-Matters-Most” letter template, which provides a simple outline that patients can follow to write to their doctor about their care choices and preferences
• The “Who Matters Most” template, which outlines the seven tasks of a life review and provides a format to share thoughts, feelings, values and goals with loved ones.
• The “I-Matter-Too” tool which helps patients identify their life goals.

Advance Directive for Dementia

Developed by Dr. Barak Gasper, M.D., a primary care physician at UW Medical Center in Seattle, Washington, the Advance Directive for Dementia is an Alzheimer’s specific living will. It describes the various stages of dementia and asks the user specific questions about what their goals of care would be when they reach each stage. 

National POLST Patient Resources

A project of the Tides Center, National POLST is a nonprofit advocacy organization that provides information and resources for seriously ill or medically frail individuals who are planning for end of life. Its Patient Resources section includes extensive information about out- of- hospital medical orders: what they are; what they are called in different states; and how to discuss them with your doctor. 

End of Life Games

Go Wish

SevenPonds’ favorite conversation starter, Go Wish cards give you an easy, entertaining way to talk about what is most important to you. The cards help you and your family find words to share your thoughts about what would be most important if you were living with a life-limiting illness. You can play Go Wish online for free or purchase the cards on the Go Wish website. 

Hello

Hello is a conversation game that helps you, your friends and your family share what’s most important to you. The game comes with five booklets containing questions like “Who haven’t you talked with in six months that you would want to talk with before you die?” and “What would you like done with your body after you die?” The game is available on the Common Practice website.

Bucket List

Created by Exit Matters, Bucket List is a board game that helps players explore what they really want to do and accomplish before they die. Suitable for up to 6 players, it is a little hard to learn but can spark meaningful conversations as the players master the ins and outs of the game. The game is available for purchase on the Exit Matters website.  

Elephant in the Room

Similar to Go Wish cards, Elephant in the Room is a series of conversation prompts aimed at encouraging players to explore what they would want or not want if they were approaching the end of their lives. It is available for purchase on Amazon.com.

The Death Deck 

The Death Deck is another conversation game that provides a fun and thought-provoking way to explore perspectives surrounding the topic of death. Since the creation of the original deck, the Death Deck has expanded to include other decks including the End of Life Deck and the Dementia Deck.

Experts in End of Life Planning and Care

Dr. Rebecca Sudore

Rebecca Sudore, M.D. is a geriatrician, palliative medicine physician, and the director of the  Innovation and Implementation Center in Aging & Palliative Care and the Vulnerable Populations Aging Research Core at the University of California San Francisco’s Pepper Center. Dr. Sudore conducts research to improve advance care planning and medical decision making for older adults. 

Contact information: 

490 Illinois Street, San Francisco, CA 94158

415-221-4810 ext. 23475

Email: Rebecca.Sudore@ucsf.edu

Dr. Barak Gaspar

Dr. Barak Gaster, M.D. is a professor of Medicine at the University of Washington and a board certified internist with a particular interest in the diagnosis and prevention of dementia. He acts as liaison and core educator at the UW Alzheimer’s Disease Research Center and was instrumental in developing one of the first advance directives for dementia in the U.S. 

Contact information:

4245 Roosevelt Way NE, Seattle, WA 98105

206.598.8750

Email: barakg@uw.edu.

Dr. Ira Byock, M.D. 

Ira Byock, M.D. is a leading authority and advocate for improving care for people living with life-limiting illness, He is an emeritus professor of medicine and community & family medicine at Dartmouth’s Geisel School of Medicine. He is also the founder of the Institute for Human Caring within the Providence health system, an organization that “drives transformation in clinical systems and culture to make caring for whole persons the new normal.” 

Contact information: 

Providence Institute for Human Caring 

879 W. 190th St., Suite 1000. Gardena, CA 90248

424) 212-5400 

Email: ira.byock@gmail.com

Thaddeus Madison Pope, J.D., Ph.D. 

Professor Thaddeus Pope is a fellow at the Hastings Center and one of the world’s foremost experts on medical law and clinical ethics. Educated at Georgetown University, where he earned his J.D. and Ph.D., his primary focus is on patient’s rights and medical decision making. Pope is a world-renowned expert on end-of-life issues, including medical aid in dying and voluntarily stopping eating and drinking. 

Contact information

Mitchell Hamline School of Law

875 Summit Ave, St Paul, MN 55105

651-695-7661

Email: thaddeus.pope@mitchellhamline.edu

Dr. Atul Gawande, MD, MPH

Dr. Atul Gawande is physician, author, public health advocate and assistant administrator for global health at USAID since January 2022. Prior to joining the Biden-Harris administration, he was a practicing general and endocrine surgeon at Brigham and Women’s Hospital and a professor at Harvard Medical School and the Harvard T.H. Chan School of Public Health. An experienced journalist, Dr. Gawande has written numerous articles for the New Yorker and  NY Times and authored several books, including the best-seller “Being Mortal”. 

Contact Information:

677 Huntington Avenue,HPM Department,Boston, MA 02115

Email: agawande@partners.org

Dr. Dawn Gross, M.D., Ph.D. 

Dawn Gross, M.D., Ph.D., is a hospice and palliative medicine physician at the University of San Francisco and the Hospice Director at ANX Home Health and Hospice. She is a passionate advocate for end-of-life decision making and empowering patients to live the end of their lives in a way that is congruent with their values and goals. She has been involved with palliative care for over two decades and is the founder and host of the groundbreaking radio show and podcast, Dying to Talk.

Contact information:

Email: Dawn@DrAsYouWish.com