Informed Consent and Advance Directives: Your Right to Determine Your Own Care
What is Advance Care Planning?
Advance Care Planning involves making decisions ahead of time about the care that you would want to receive should you become unable to speak for yourself. These are your decisions to make, regardless of what you choose for your care and are based on your personal values, preferences, beliefs , wishes and discussions with loved ones.
What is an Advance Directive?
An Advance Directive is a legal document that allows you to spell out your decisions regarding your end of life care ahead of time. The document provides important information for you to be able to express your wishes to family, friends and healthcare professionals if you should become medically unable to speak for yourself.
Advance Care Planning Resources
(*Please note: Some of the resources below may have a cost attached.)
Living Your Last Years - Toolkits to help Mainers talk about end of life care. This online site provides helpful information, resources and important advanced care planning documents for Maine residents.
American Bar Association Advance Planning Toolkit - This online toolkit answers basic questions about advance care directives, legal issues surrounding serious illness and decision making, and elder care ethics.
The American Bar Association has also developed the My Healthcare Wishes app, which offers unlimited storage and management of personal and family profiles and documents, including advance directives, living wills, health care powers of attorney, DNR orders, POLST documents (Physician Orders for Life-Sustaining Treatment), and related information (available for a small fee.)
Aging with Dignity and Five Wishes - Provides practical information, advice and legal tools for Advance Care Planning, including the "Five Wishes" Advance Directive. Also offers "Voicing My Choices: A Planning Guide for Adolescents & Young Adults" (in English and Spanish), a tool that helps young people living with a serious illness communicate their preferences to friends, family and caregivers.
The Center for Practical Bioethics - Offers downloadable resources, including the workbook "Caring Conversations," as well as case studies and audio interviews about the importance of advance care planning.
The Conversation Project - Features The Conversation Starter Kit, aimed at helping people overcome barriers to planning and to start talking to family and loved ones. Available in English, Spanish, French, and Mandarin.
Go Wish Game - Developed by The Coda Alliance helps stimulate discussion that would focus in a positive way on values and wishes about end-of-life care. The card game can be an effective tool for elderly people with limited cognition, and for people with limited literacy and limited skills in the English language, without seeming too simplistic for those with higher education.
Hospice Foundation of America - The website has extensive resources for clinicians and consumers on advance care planning, end-of-life care decision making, hospice care, and grief. Find state-specific Advance Directensive resources for clinicians and consumers on advance care planning, end-of-life care decision making, hospice care, and grief.
MyDirectives.com - A service of ADVault, Inc., is a free online platform that allows consumers to digitize their voices and treatment priorities in a comprehensive legal advance care plan that is secure in the cloud and available 24/7 anywhere in the world.
MyDirectives also features a Discussion Guide and Conversation Starters to help people have discussions with doctors, family and healthcare agents and also offers a new mobile app.
National Hospice and Palliative Care Organization - The National Hospice and Palliative Care Organization (NHPCO) is the largest nonprofit membership organization representing hospice and palliative care programs and professionals in the United States.
Caring Connections is a program of the National Hospice and Palliative Care Organization that provides free resources to help people make decisions about end-of-life care before a crisis.
National Institute on Aging Advance Care - Planning Tip Sheet that offers advice on advance care planning including helpful descriptions and definitions of medical situations that may occur and tips for considering decisions around treatment
Online Living Will Registries:
- America Living Will Registry
- U.S. Living Will Registry
- MedicAlert Foundation
- Organ Donation.gov run by the US Dept. of Health and Human Services, offers resources and materials on organ donation.
Prepare for Your Care - This website, developed by geriatricians and other medical professionals, walks people through basic steps in Advance Care Planning and provides prompts and videos to help them get started. Information is available in English and Spanish.