PREPARE for Your Care™
PREPARE for Your Care™. PREPARE is an online resource in English and Spanish that helps people learn about and prepare for medical decision making. This evidenced-based tool features video stories and examples and guides people as they explore their wishes and learn how to discuss them with family, friends, and medical providers. The result is a ‘Summary of My Wishes’ document which can be shared with family and friends, caregivers and medical providers. PREPARE also offers easy-to-read, legally-binding advance directives for all 50 states in English and Spanish. www.prepareforyourcare.org.
The Conversation Project
The Conversation Project, an initiative begun in 2010 dedicated to helping people talk about their wishes for end-of-life care. Their Conversation Starter Kit is a useful tool to help you have the conversation with a family member, friend, or other loved one about your – or their – wishes regarding end-of-life care. It is available in several languages. www.theconversationproject.org.
Consumer's Tool Kit for Health Care Advance Planning
Consumer's Tool Kit for Health Care Advance Planning, by the American Bar Association Commission on Law and Aging is available for free download. http://ambar.org/agingtoolkit.
The Stanford Letter Project
The Stanford Letter Project. This free website offers three tools available in several languages and formats with real patient videos, at http://med.stanford.edu/letter.
- The “What-Matters-Most” letter template. Simple letter template any one can use to write to their doctor about their care choices and preference
- The “Who-Matters-Most” letter template. Simple letter template any one can use to complete the seven tasks of life review and write to their loved ones.
- The “I-Matter-Too” tool. Allows patients to identify their life goals from six common choices.
CaringInfo, a program of the National Hospice and Palliative Care Organization, provides free resources to help people make decisions about end-of-life care and services before a crisis. www.caringinfo.org
Go Wish Game
The Go Wish Game, a card game for sorting out values related to end-of-life decision-making, created by the Coda Alliance. The cards help you find words to talk family or friends about what is important if you were to be living a life that may be shortened by serious illness. Although there is a charge for ordering the card decks, Go Wish can be played online for free. www.gowish.org ADVANCE CARE PLANNING TOOLS FOR CLIENTS 10 MyDirectives.com.
MyDirectives is a free web-based service that walks you through the process of creating an “advance digital directive” which can be electronically signed. Includes a smartphone app. The directive is encrypted and stored in their secure database, available to you and your medical treatment providers 24/7. https://mydirectives.com
Advance Care Planning Decisions
Advance Care Planning Decisions, produces short, evidence-based videos exclusively for health care providers to assist patients and providers in decision-making in clinical settings. A limited number of videos for consumers are available free in multiple languages. Topics include: The Conversation; POLST; What is Palliative Care; Talking to Your Doctor; and A Patient Checklist. https://acpdecisions.org/patients.
Compassion and Choices
Compassion and Choices - Tools to Plan for your Care. This web page offers a multitude of useful tools aimed at ensuring you get the care you want. https://www.compassionandchoices.org/eolc-tools/ .
Thinking Ahead: My Way, My Choice, My Life at the End
Thinking Ahead: My Way, My Choice, My Life at the End. This workbook and video were created by California advocates with developmental disabilities and distributed by the Coalition for Compassionate Care of California. However, it is a good tool for anyone who wants a simple, easy-to-follow workbook. http://coalitionccc.org/tools-resources/people-with-developmental-disabilities.
Five Wishes. An advance care planning program of Aging with Dignity. Easy to use resources include the Five Wishes advance directive (available in 29 languages and Braille), conversation guides, clinician guides and training programs. Five wishes addresses emotional, spiritual and personal aspects of care, along with appointing an agent and providing instructions. A free discussion starter is available. Other resources are available for a small fee. www.fivewishes.org.
Guides For Health Care Agents
How to Choose a Health Care Proxy & How to Be a Health Care Proxy, by the Conversation Project. https://theconversationproject.org/wp-content/uploads/2017/03/ConversationProject-ProxyKit-English.pdf.
Making Decisions for Someone Else: A How-To Guide, published by the ABA Commission on Law and Aging, this guide is for anyone serving in the role of health care decision maker for someone else: http://ambar.org/agingproxyguide.
Guides for Talking to One's Physician
How to Talk to Your Doctor: Discussing End-of-life Care with Your Doctor, Nurse, or Other Health Care Provider. The Conversation Project.
NIH Resources for “Talking to your Doctor,” National Institutes of Health, https://newsinhealth.nih.gov/2015/06/talking-your-doctor
END OF LIFE: What Are Palliative Care and Hospice Care? An online publication by the National Institutes on Aging (NIA) that explains palliative care and hospice options, with links to free related NIA articles. www.nia.nih.gov/health/what-are-palliative-care-and-hospice-care.
Handbook for Mortals: Guidance for People Facing Serious Illness by Joanne Lynn, Joan Harrold, and Janice Lynch Schuster (2nd Ed., Oxford Univ. Press, 2011). A comprehensive and readable 320-page guide to dealing with serious, eventually fatal illness. Available for purchase from Amazon or in book stores. Individual chapters are downloadable for free at: http://growthhouse.org/mortals/mor0.html.
Hard Choices for Loving People: CPR, Artificial Feeding, Comfort Measures Only and the Elderly Patient by Hank Dunn (A&A Publishers, 2016) Available for purchase at: www.hankdunn.com. A concise and helpful 80-page booklet on end-of-life decisions concerning resuscitation, food and fluids, hospitalization, and cure versus comfort care.
Fidelity, Wisdom and Love: Patients and Proxies in Partnership by Joseph J. Fins and Barbara S. Maltby (Weill Medical College of Cornell University, March, 2003). A workbook and video designed as a step-by-step guide that provides everything you need to know about choosing, appointing, or being a healthcare proxy. It contains four medical scenarios designed to foster dialogue between patients and proxies in order to define possible choices for care and to increase patient/proxy understanding and knowledge. Available for purchase from Amazon.com.