(The author is Final Exit Network’s Surrogate Consultant and is a patient advocate and founder of Ending Well! Patient Advocacy. She focuses on end-of-life care and planning, aiming to help people have a “good death.” She can be reached at Final Exit Network and LinkedIn. – Jay Niver, editor)
As Final Exit’s Surrogate Consultant, people often ask me for advice on the best Advance Directive (AD) to cover their medical and end-of-life (EOL) wishes. Unfortunately, the answer is not that simple.
An AD is a “legally recognized” document usually containing a Living Will that spells out your preferences and treatment options when you cannot speak for yourself. It also includes the designation of a healthcare surrogate/proxy to follow your wishes. Another form, a Healthcare Power-of-Attorney (HC-POA), is a separate legal document, often created by a lawyer, that grants another person the right to make ALL your healthcare decisions at a pre-determined time.
AD and HC-POA forms are STATE-SPECIFIC, meaning that each state and the District of Columbia have laws controlling them. These legal forms are often fileable online and have instructions for use, but they are typically very basic and, most important, have rules for witnessing your signature.
The Attorney General’s Office in most states offers these forms free, though I find a lot of them a little overwhelming and burdensome. However, I have access to every state’s AD online form through Caring Info, and I email links to people who request them https://www.caringinfo.org/planning/advance-directives/.
Note: Even though the forms are fillable online, they have to be printed, signed, and witnessed in person (and in some states notarized), so the process is not totally online.
I often suggest people use the Five Wishes AD, which offers a printed and online format and is valid nationwide with a few caveats. Five Wishes is easy to understand and user-friendly. I recently had a client write two pages of notes in her Five Wishes, making it adaptable to individual medical and EOL choices and care.
Note: Five Wishes is not free. It is $5 plus shipping for a printed form and $10 for the online version: https://fivewishes.org/five-wishes/individuals-families/individuals-and-families. Another form, PREPARE, is free, easy to use, and it covers all 50 states: https://prepareforyourcare.org/advance-directive.
The first section in most directives is naming a healthcare agent to speak for you when you are incapacitated. This person may also be called a surrogate, agent, or proxy, depending on the jurisdiction. Typically, this person does NOT have your HC-POA, and there are many misconceptions about the surrogate vs. the HC-POA role.
In addition, you might have a scenario where someone names a surrogate in an AD and creates an HC-POA with their attorney, where they appoint a different person. The person with the HC-POA has the force of the law behind them to make your healthcare decisions if you cannot. It is an area rife for conflict if you name more than one person to help honor your wishes.
Note: there are two kinds of POA’s: healthcare/medical and financial. Both POA’s are needed to handle your affairs when you cannot.
Another question I often get is, “Will my AD be accepted in another state?” Charles Sabatino, director of the American Bar Association Commission on Law and Aging, discusses the portability of an AD in his article, “Can My Advance Directives Travel Across State Lines?” The answer is, “it depends.” https://www.americanbar.org/groups/law_aging/publications/bifocal/vol_38/issue_1_october2016/advance-directives-across-state-lines/.
If you live in two different states, it is best to know each state’s AD law and create your directive to be valid in both. In reality, only about one-third of adults have an AD, so the medical staff is happy to get any AD in an emergent situation, no matter where it was written. Doctors will follow your known wishes in a “valid” AD to avoid liability, but validity in these cases can be murky, at best. Cover your bases and make your directive usable and valid in the states where you live.
I suggest making a video spelling out your wishes. Record it on your phone and state your name, date, and EOL wishes and goals. The video is used for backup if there are any questions or family conflicts about what you want, if you can’t speak for yourself. Keep it on a thumb drive along with your AD.
The essential takeaway is to create an AD and have “the conversation” about your medical and EOL wishes with your HC-POA, surrogate, family, and healthcare providers. Make any changes to your AD as you age or your health declines. Keep your AD updated and easily accessible to ensure your wishes are honored.
(Note: This material is intended for general information purposes and does not constitute legal advice.)
Many thanks, Althea, for this valuable and practical advice. It’s helpful even to those of us who have advance directives and surrogates and essential for the two-thirds of the people who don’t have them. Another resource for those concerned about dementia is the Supplemental Advance Directive for Dementia Care at https://finalexitnetwork.org/supplemental-advance-directive-for-dementia-care/