Completing advance care planning documents such as living wills, healthcare advance directives, or healthcare power of attorney is a task many tend to put off. Discussions around advance care planning can be uncomfortable, complicated, and emotional for many families, and many do not even know where to begin.

Advance care planning is the documentation of a person’s preferences for care at the end of life. Documentation and terminology can vary from state to state but typically covers preferences regarding specific types of life-sustaining care, comfort and hospice care, funeral arrangements, and brain donation or brain autopsy. Advance care planning documents can also designate individuals to act as healthcare agents to make decisions on the person’s behalf should they be unable to do so. These documents are important for any adult, including care partners, but should be created or reviewed whenever there is a significant change in health status, including a new diagnosis of FTD.

Starting as soon as possible after an FTD diagnosis will help ensure that the person living with FTD makes informed decisions about advance care and communicates those choices effectively. Suppose the person is unable or unwilling to complete the documents. In that case, end-of-life decisions will often be made by a next of kin or a designated legal decision-maker when the person has reached the end of life. In these cases, it is still important to prepare for these decisions by considering the person’s past preferences and learning about life-sustaining treatment choices.

An elder care attorney is vital in completing these and other essential legal documents. However, there are other resources available to help you complete advance care planning, including by having discussions with your health care providers. See the listing at the end of this article for valuable resources to guide conversations and complete documents. Once documents are completed, copies should be given to loved ones and your healthcare providers.

States nationwide have implemented a program called Physician Orders for Life-Sustaining Treatment (POLST). This program helps ill people or their healthcare agent identify their preferences for specific types of treatment with their healthcare providers. POLST documents have different names and formats in different states but allow a person’s preferences for life-sustaining treatment to be identified in a paper that travels with the person. POLST forms can be used with existing living wills or advance care documents. Completing a POLST form is another way to ensure that the person’s wishes are communicated and will be followed whenever appropriate. For more information about the program in your state, visit the POLST website by clicking here.

AFTD’s HelpLine offers guidance for persons living with FTD, care partners, and family members in navigating these essential documents and tools. Those with pressing questions are welcome to reach out to the HelpLine at 1-866-507-7222 or info@theaftd.org.

Additional Resources to Guide Conversations and Complete Documents:

• National Academy of Elder Law Attorneys
• The Conversation Project
• CaringInfo, state-specific forms, and information
• Five Wishes
• Caring Conversations
• The African-American Spiritual and Ethical Guide to End-of-Life Care