You should have an advance directive for yourself, and so should the person you care for. This article has important information for anyone who is getting their paperwork in order.
Once you have thought through what matters most and chosen a healthcare decision maker (aka your “healthcare agent”), you will want to have several key conversations and then put your thoughts in writing. The document that assembles all that information in a legal format is called an “advance directive.” The idea is that you are directing people ahead of time about the healthcare decisions you would like made for you if you are not able to communicate them at the time.
An advance directive is actually two documents in one:
Healthcare power of attorney. This document names your decision maker. That role is called by different names in different states. You may hear it called “healthcare agent,” “healthcare proxy,” or “healthcare surrogate.” The point is to pick a person you trust whom the doctors can work with to make decisions in your stead.
Living will. This document expresses your preferences about end-of-life care. Often it includes your thoughts about what life support measures you want used to forestall death versus how much you would prefer being kept comfortable but let nature take its course.
These documents come into play only if you are unable to make decisions for yourself (for instance, you are unconscious, or you have moderate to advanced dementia). If you do become able to make decisions again, you are back in the driver’s seat. These documents will continue to be applicable should there be a future time when you need someone to step in.
Forms vary by state, as do the rules for when they apply. For instance, two physicians may need to certify that you are unable to make decisions on your own. In some states they must also agree about the condition that makes that so (e.g., terminal illness, permanent unconsciousness). If you regularly spend time in two states, it’s optimal to have documents drafted using the preferred format in each state.
They are legally binding, but you can change them at any time. They are legal documents. Doctors will honor your wishes if these documents are brought forward. If for some reason there is a legal dispute, the courts will refer to what you have written in your advance directive. As soon as they are signed, they are legally binding. That said, you can always make a new one. The most recently dated document available at the time is the one that will be followed.
Emergency medical technicians (EMTs) cannot be bound by the advance directive. If someone has called 911, then the assumption is that all measures are to be implemented in the journey from home to the hospital. Time is of the essence and they cannot be held up with finding and verifying paperwork, finding and verifying the healthcare agent. [haspolst] Our state has a POLST (Physician Order for Life Sustaining Treatment), which is an additional form completed by the doctor that very succinctly gives orders about specific treatments. If you are seriously ill, ask your doctor to complete a POLST. Keep it on the refrigerator door. Emergency personnel are instructed to look there to see if other orders are in place besides their default instructions to do everything to keep you alive.[/haspolst]
A word about living trusts, living wills, and wills. Unfortunately, these are very different documents with very similar names, which may lead to some confusion.
A “living trust” involves guidance concerning financial decisions if at any point you are unable to manage your monetary affairs. In it, you pick a trustee to make those decisions in your stead.
A “living will” involves guidance concerning medical decisions if at any point you are unable to make your own healthcare decisions.
A “will” is a legal document that comes into play after you die. It describes how you want your possessions distributed. It does not address who makes financial decisions for you if you need help with that before you pass on.
Creating the advance directive is only half the job. It also should be stored in a place where it can be readily accessed in time of need.
You will want to make several copies of the advance directive. Distribute them to people or places where they can be readily retrieved. Medical emergencies happen at odd hours, for instance. You DON’T want to have the only copy in a safe deposit box or at the attorney’s office.
Consider a copy each for:
The healthcare decision maker and any alternates
Key family members
At home, with a big label in a place where others would think to look
The primary care physician
Other specialists
The attorney
Any faith leader (clergy)
The local hospital
With emergency medical documents (a prepared collection of papers assembled specifically for going to the ER. It generally has the list of doctors, list of medications, medical history, etc.)
In a theft-proof, fireproof, flood-proof location, such as a safe deposit box, as long as that isn’t the only spot
There is no limit on the number of copies. You just want to keep a list of where they have been distributed. Likely updates will be made over the years. You want to know who to send the updated version to.
Digital storage
There are several ways to make the advance directive available digitally. This way, anyone with the password can access it, no matter where they are. Consider:
Medical alert services
Health apps available for iPhone and Android systems
The electronic medical record of your physician and the local hospital
More and more state governments are offering digital storage options for advance directives. You can also check for online services offered by nonprofit and for-profit organizations. They will have forms to fill out online and store on their server.
Our priorities shift as we age. People move. Relationships may change. There are many reasons to update an advance directive. Experiencing the serious illness of a friend or family member often causes some rethinking about end-of-life decisions.
It is recommended that both the living will (which gives guidance for medical interventions) and the healthcare decision maker be reviewed and updated at these key life junctures:
Receiving a serious diagnosis. Our perspective on what matters most often changes within a new health context. It’s good to revisit key conversations and consider who will be the best advocate if it becomes necessary.
Significant life events, such as widowhood, divorce, or getting married.
Moving to a new state. A document from another state may be honored, but it’s most prudent to complete the form required by the new state of residence.
Once every ten years, perhaps at the turn of a decade (for example, fiftieth, sixtieth, seventieth birthdays)
Going on a big trip. Traveling may engender risks that warrant some thinking ahead of time.
In addition to reviewing documents, it’s wise to touch base with the healthcare decision maker, at the least to reaffirm they are still willing to serve in that role. But also to discuss any revisions or refinements made to the living will.
If changes are made, it is recommended that a brand-new document be created. Send the updated version to everyone who received the original. Ask them to toss out the previous advance directive and replace it with the new one.
