Advance Directive Forms, Apps, & Online Guides
Advance Healthcare Directives are a critical part of planning for end of life. In this article we dig into exactly what they are, how you use them, how you get help understanding them, as well as what we have learned about online resources and Apps for completing an Advance Directive Form.
This is the second part of a series on end of life planning. The first part of the series is here: End of Life Planning.
What is an Advance Healthcare Directive?
Wikipedia has a good overview of advance directives, their history, and the various subcategories of advance directive (1). Here is our shorter summary.
An Advance Healthcare Directive is a legal document (in some cases several documents) that set out your specific wishes regarding how you will be taken care of in a serious medical situation.
An Advance Healthcare Directive may also be called a Personal Directive, Advance Directive, Medical Directive, or Advance Decision.
The three big purposes of an advance directive are to:
- nominate a person whom you want to make healthcare-related decisions on your behalf (for example when you can no longer make them for yourself);
- leave specific instructions for how you would like to be treated (or not) in some specific situations (eg do you want a feeding tube; do you want to be on a ventilator);
- share your specific values and "wishes" regarding some less concrete aspects of how you wish your end of life to unfold (for example spiritual and emotional aspects).
Advance directives are also used to document any wishes you may have regarding donation of organs or tissue.
NOTE: An advance directive is different to a POLST form, which you can read more about in POLST & MOLST: Physician Orders.
Advance Directive, Living Will, Healthcare Power of Attorney: What's the Difference?
Living Wills, and Healthcare Powers of Attorney are specific types of Advance Directive.
A "Healthcare Power of Attorney" (also called a "Durable Power of Attorney for Healthcare", or a "Health Proxy") is a type of Advance Directive which nominates a specific individual to make healthcare decisions on your behalf.
A "Living Will" is a type of Advance Directive which specifies how you want to be treated in various specific situations if you are not able to speak for yourself at the time.
As we explored this topic in late 2019, we learned that a very common approach is to combine both the Healthcare Power of Attorney and the Living Will into a single document — known simply as an Advance Directive. This may or may not include the spiritual and emotional aspects of things.
The Right Advance Directive Form for Your Geography
Advance Directives are legal documents, and the exact form of an Advance Directive document varies from state to state in the USA, and also from country to country.
If you live somewhere outside the USA, there is some information about the status of advance directives in a number of countries in this Wikipedia article on Advance Directives (1). Wikipedia discusses the legal situation regarding advance directives in Australia, Canada, the European Union, (and more specifically the United Kingdom, Germany, Italy, The Netherlands), Switzerland and India.
Advance Healthcare Directive Templates
Within the USA, the specific form which an advance directive needs to take to be legally binding varies somewhat from state to state. The National Hospice and Palliative Care Organization has created a webpage with links where you can download state-specific advance directive forms from each US state. View these state-specific advance directive forms.
As an alternative, the resources we mention below — designed to help you make the decisions and capture them in an advance directive — typically come with variants for different states too.
Getting Help with an Advance Healthcare Directive
You can of course retain an attorney to create an advance directive for you. The resources below are helpful either to prepare yourself for that process, or if you decide to do it yourself.
Advance Directive Forms & Guidance Online
We found a number of resources designed to educate you about the choices you need to make regarding the care you want at the end of life, and capture those in an advance healthcare directive. These resources are all online, and readily available. Most of them are free.
Below are some of the resources we found that seemed especially helpful. If you have other resources to recommend, please mention them in the comments section at the bottom. Many of these resources come in multiple languages. They all focus on US-based readers, however.
The Conversation Project
The Conversation Project is a Boston-based "public engagement initiative with the goal: ... to have every person's wishes for end-of-life care expressed and respected."
The Conversation Project provides helpful templates and guides that focus on "picking the person" who will be your healthcare proxy; then "having the conversation" with your loved ones in which you share your wishes with them verbally; and then "writing a letter" that captures your wishes.
The focus of this resource is on making the hard decision and then discussing it, which are some of the most challenging things you need to do to prepare an advance directive. This resource focuses on what you need to do before you are ready to complete an advance directive. It does not provide the advance directive form, or help you actually fill it out.
- See more about The Conversation Project in our Resource & Product database.
Prepare for Your Care
Prepare for your Care is an online guide to making the decisions and completing an advance directive.
Prepare for your Care takes you all the way through to having a completed advance healthcare directive. It helps with the steps of choosing a medical decision maker; deciding what matters most in life; deciding how much flexibility you want your decision maker to have; telling others about your wishes; discussing things with your doctor; documenting your wishes; and completing an advance directive form.
The process is simple, with all the examples and instructions written in language that is very easy to understand. However it has many steps, and takes quite a long time.
You get asked which state you live in, and it seems that the output is a state-specific advance healthcare directive.
- See more about Prepare for your Care in our Resource & Product database.
Stanford Letter Project
The Stanford Letter Project is an online resource that attempts to simplify the process of creating an advance directive, and avoid the legal jargon that usually accompanies the process of creating such a document. It was developed by researchers at Stanford University, and is to be found on the Stanford Medicine website.
You answer some simple questions in plain english, and the website generates for you a letter explaining your wishes, a legal advance healthcare directive, and a letter to your doctor.
The process is simple and quick. But it lacks the extensive video explanations and guides of Prepare for your Care. As best we can tell the advance directive is a California Advance Directive, so if you live elsewhere you would need to replicate the answers on a different advance directive for your state.
- See more about The Stanford Letter Project in our Resource & Product database.
The Five Wishes project, run by the nonprofit "Aging with Dignity", makes it possible to create an advance directive called the Five Wishes advance directive. It also provides a guide to talking with your family about your wishes.
The Five Wishes Advance Directive adds some additional sections to the more standard advance directives, such as are provided by states. These additional portions deal with spiritual, personal, and emotional wishes.
- See more about Five Wishes in our Resource & Product database.
There are a number of other resources that we have not singled out for specific mention. You can find many of them in our database of "Useful Resources and Products". Those most relevant to this article appear in the panel at the bottom of the page (for members who are logged in).
Advance Directive Registries & Apps
After doing all this planning and creating an advance healthcare directive, there is one more step to take. And that is to make sure that in an emergency people will be able to get access to it, and will know it exists.
The tried and true approach is to talk with your family and doctors and make sure everyone has a copy. However, to some this seems a bit of an old-fashioned approach, and people ask whether there is some clever online approach or App that can handle this for you.
There are definitely some initiatives emerging to make your advance directive available online, in the form of both Apps and websites. We have not dug deeply into these, and are not ready to make any recommendations. But here is what we have learned, and how to investigate more deeply.
There are a number of online "registries" where you load your advance directive into an online registry database, and get a card to carry around with you that tells people how to access that advance directive in an emergency.
There are a number of states that have created government run, advance directive registries where you can do this — including Arizona, California, Idaho, Louisiana, Maryland, Michigan, Montana, Nevada, North Carolina, Oklahoma, Vermont, Virginia and Washington.
There are also several private online advance directive registries. The American Bar Association website contains a brief list of private and state advance directive registries (8), with contact details.
Advance Directive Apps
There are several emerging online apps and websites for managing your advance directives. Some of these are included above in the category of "registries".
We have not done an offical comparative review, so we don't have specific recommendations. Please add coments if you have experience with any of these.
You can see the ones we are following in our Product & Resource database, in the panel lower down the page where we list these apps and websites, as well as other end of life products and resources. By clicking on the links you will see our most recent discussions, comments, and reviews (if any) of these apps.
Here are some questions, we think relevant if you are researching these Advance Directive Apps and Registries.
- Do they handle POLST and advance directives, or just one or the other?
- Are they connected to or related in some way to the state registry?
- Will they still be in business when you need to access your documents?
- How well regarded are they by your local healthcare system, and do the doctors who will be taking care of you know how to access these apps?
- Do they connect to the electronic health records at your local hospital?
- How good is the security of your data, if you care about that?
- What is their business model, and does that raise any potential questions (ie who pays, are they in business to serve you or someone else)?
- Do they have a track record, and lots of existing customers?
- Do they have a proven business model that ensures long term sustainability?
Learn More & References
(1) Wikipedia: Advance Directives
(2) Wikipedia: POLST, MOLST etc
(3) US National Library of Medicine (Medline): Advance Directives
(4) National Institute on Aging: Advance Care Planning: Healthcare Directives
(5) AARP: "State-specific downloadable Advance Directive Forms" (from CaringInfo.org)
(6) American Bar Association: "Advance Care Planning Toolkit"
(8) American Bar Association: List of Advance Directive Registries
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