October 01, 2020

Self-Help Online Advance Care Planning Tools

The pdf for the issue in which this article appears is available for download: Bifocal, Vol. 42, Issue 1.)

In today’s digital world, there are many products and services available online for consumers to initiate the advance care planning process independently or with the help of their physician. These services address several of the barriers present in traditional models of advance care planning. First, the online advance care planning platforms described below provide explanations and user-friendly language that help users understand the complex medical and legal jargon present in advance care planning documents. Second, these platforms offer guidance for individuals to specify their medical desires and encourage them to discuss with their family and friends their healthcare goals and values, which reduces the anxiety that loved ones will misinterpret the user’s desires. Third, these platforms offer simple, free, and accessible forms to enable users to complete their own health care advance directives.  Fourth, each of the platforms provide or connect to resources to make one’s advance directive accessible when and where needed. 

We describe four digital platforms that offer simple, affordable and accessible ways to create advance directives: MyDirectives, Five Wishes, PREPARE for your Care, and the Health Care Advance Planning Packet.

MyDirectives offers free services for users to create advance directives and provide the option to record or videotape users’ advance directive. Self-described as “the world’s leading digital advance care planning platform,” MyDirectives has users in over 50 countries, and users can now download MyDirectives’ MOBILE for their Apple or Android device. MyDirectives online services are free to use and guide users through a series of questions pertaining to end-of-life care in order to appoint an appropriate health care proxy or agent and to identify one’s preferences for life-sustaining treatments in specified circumstances. MyDirectives also allows the user to prioritize their life values and healthcare goals (e.g., being free from pain, being with family, being able to care for oneself, avoiding prolonged dependence on machines, dying at home). In addition to the traditional questions regarding treatment and end-of-life care preferences, users can also specify their likes/joys, dislikes/fears, religious beliefs and pre-arranged funeral plans/wishes. Additionally, users can provide emergency contacts’ information.

Throughout its questionnaires, MyDirectives provides user-friendly definitions for legal and medical terms (e.g., health care agent, life sustaining treatment, CPR). After completing the questions, MyDirectives generates a document which the user can download, print and sign and have witnessed. MyDirectives includes the option to upload an existing living will, medical power of attorney form, or other advance care planning document, regardless of its form or source.

All information that is created or uploaded to MyDirectives is stored in the ADVault Exchange which allows the information to be shared with healthcare providers and payers. ADVault partners with electronic health records and links advance care plans, advance directives, and portable medical orders to patient’s health records which enables clinicians to access a patient's advance care plans and directives. MyDirectives also provides users with links, wallet cards and iPhone lock screen notifications which inform others that the user has an advance directive. This information can also be accessed by medical professionals from a database in the cloud.

Five Wishes provides documents that explain complex legal and medical terms in accessible language to enable users to express their personal, spiritual, medical and legal wishes. Wish 1 allows a person to designate a healthcare agent and provides factors that the user should consider when selecting a healthcare agent. Wish 2 is a Living Will that allows an individual to specify what kinds of medical treatment they want or do not want. Wish 3 is entitled “My Wish for How Comfortable I Want to Be” and allows the user to describe their comfort preferences (e.g., what special items the user wants to have around them, pain control, hospice care). Wish 4 is entitled “My Wish for How I Want People to Treat Me” and allows a person to discuss topics such as if they want someone to pray with them and if they would like their hand held when they are near death. Wish 5 allows the user to express their concerns regarding issues such as what they want their family and friends to know about them, how they want to be remembered, and funeral plans.

Upon completion of Five Wishes, the user prints it out for signing and witnessing. Five Wishes can also be uploaded and stored to the MyDirective eRegistry or any other registry. Five Wishes reports that it meets the formal requirements for valid advance directives in 42 states but is usable in all states to help guide individuals in the advance care planning process. A great plus of Five Wishes is that it is available in 29 different languages.

PREPARE for your Care is an online program that provides a step-by-step approach to the advance care planning process. It provides users with 5 different steps, each with video examples of differing views that people hold about these decisions plus explanations by physicians. Step 1 provides information addressing selection of a medical decision maker and why choosing a medical decision maker is so important. Step 2 discusses what matters most in the individual’s life, including personal relationships, values, and beliefs. Step 3 helps users think about the amount of flexibility to give a medical decision maker. Step 4 explains why it is important to let others know of one’s advance care plan and helps the user plan how do accomplish that. Step 5 helps users prepare to ask questions of their doctor that will aid them in the advance care planning process.

Each of these steps includes multiple choice questions that allows users to create a customized advance care plan. After going through these steps, PREPARE then creates a “Summary of My Wishes and Action Plan”, which can be used to aid discussions with medical practitioners and family members. PREPARE recently added the option of incorporating one’s wishes and action plan into an Advance Directive form valid or the user’s state. The advance directive forms are available in English and Spanish in all states and in multiple other languages in select states.

The Health Care Advance Planning Packet of the ABA Commission on Law and Aging provides a trio of resources that provides support for both the individual interested in advance planning the individuals who are asked to become the decision-maker for someone else.  The “Tool Kit for Health Care Advance Planning” helps users clarify their values, priorities, and wishes regarding your future health care.  The “Multi-State Health Care Power of Attorney” enables one to appoint a health care proxy decision-maker that will be recognized in most states.  The form can be completed on your computer or downloaded and completed by hand.  “How to Make Decisions for Someone Else” is a guide for persons named as proxy decision-makers, explaining the job description of a proxy and tips for making good decisions.

A fourth ABA resource separate from the packet but recommended by it is the Mind Your Loved Ones or MYLO smartphone app that may be purchased at a discounted price through the ABA web pageMYLO provides a practical way to make your health care power of attorney, along with any other health-related information you choose, easily accessible on one’s own smartphone and the phones of any family members or friends of one’s choice. 

Creating an advance care plan has typically been a confusing and even intimidating task for many people, and once it has been completed it has too often been difficult for loved ones to access or interpret the individual’s wishes. MyDirectives, Five Wishes, PREPARE for your Care, and the Health Care Advance Planning Packet all provide user-friendly aids to enable individuals and their families to engage in effective advance care planning.  The goal of each of them is to encourage and assist more people to create meaningful advance care plans for their future. If you would like to learn more about any of these platforms, please visit MyDirectives.com, Five Wishes, PREPARE , and Health Care Advance Planning Packet for more information.

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Megan Richelsoph

Former Intern With the Commission on Law and Aging

Megan Richelsoph is a 2L at University of Maryland Francis King Carey School of Law. She is from Charlotte, North Carolina and went to North Carolina State University for undergrad. She will likely be pursuing criminal law upon completion of ultimate goal would be to work for an organization such as The Innocence Project.

Sarah Kolick

Former Intern With the Commission on Law and Aging

Sarah Kolick is a 2L at the George Washington School of Law. Sarah graduated from Smith College in 2019 with a degree in East Asian Languages and Government. She hopes to pursue a career in social justice activism after law school.