As your senior ages or becomes frail, you will likely start hearing terms like advanced directives or living will thrown around. It’s hard to know what to do with these terms if you don’t even know what they really mean. Medical staff use these terms regularly and often forget that not everyone is familiar with them, why they are important or what their legal implications are.
I always get a laugh when I am checking in for a procedure in a hospital setting and the person checking me in casually and monotonously asks, usually without looking up from their screen, if I have an advanced directive. To me, there’s a distinct DMV vibe to this experience- similar to when you are asked if you want to be an organ donor. It’s so casual and off hand.
“If you die, do you want to donate your organs?”
“If you have a healthcare crisis do you want us to do everything or nothing to save your life? Quickly please, there’s a line…”
Sometimes I want to stop and say “what’s that?” just to see what they say.
What Even Is This?
An advanced directive serves two purposes. First, a surrogate decision maker is designated- usually called a healthcare power of attorney. Most people choose a family member or a close friend to fill this role but it can also be a lawyer or other adviser. Most states require the surrogate decision maker to sign the advanced directive but not always so take note- this is not a job to surprise someone with!
Secondly, the document is in place to communicate a person’s treatment goals, values and wishes. Documents vary from state to state and there are places to communicate care goals around breathing tubes, feeding tubes, antibiotics, dialysis. There are also free-form sections to write in explicit wishes that are not already addressed in the document. Each state has free advanced directives available for anyone to print and complete.
It is critical to understand that an advanced directive cannot cover all scenarios- it mostly provides a guideline. This is why a conversation around end of life care is so important. Advanced directives are legally recognized but not legally binding. This means that your healthcare providers will do their best to carry out your wishes but there are times when they may not be able to fulfill your wishes exactly. Antibiotics are a good example- sometimes these are life saving medications and other times they are comfort medications- it depends on the nature and extent of the infection.
To make the document valid you either need 2 witnesses to sign it or have it notarized. The forms are both wordy and fairly straightforward. They are not too difficult to complete and if there is confusion- talk with your senior’s healthcare provider about it- they can easily help. But do us a favor please, make the advanced directive the purpose of the visit, not an “oh, by the way” at the end of the visit.
Every adult should have an advanced directive because accidents do happen and there may come a time when you are unexpectedly unable to make decisions about your care. But…..
Most People Don’t Have One!
Only about ONE-THIRD of US adults has an advanced directive. Only 46% of older adults have an advanced directive and the number increases only slightly if a chronic illness is involved. As a patient gets older there will be more talk about advanced directives as it is super important to have them because, well, odds of death increase with age. Planning lessens anxiety and confusion if the unexpected occurs. When there is a healthcare crisis like a stroke, emotions run high and advanced directives will help everyone know what to do. Trust me, when your dad has been admitted to the ICU and things are touch and go, the last thing you need is an argument with your siblings over whether or not he would want CPR performed. I’ve watched that happen and trust me, it’s not pretty.
Why Don’t People Have One?
Turns out, it’s hard to talk about your own demise. No one wants to think about the nitty gritty details concerning the end of their lives. People often joke about tattooing DNR to their chests and unplugging the ventilators but when it comes right down to it, it’s just murky. It’s hard to say “just let me go.” It’s also hard to say “do everything you can, I’m not ready yet.”
Some people don’t want to burden others with the big job of being a healthcare surrogate. Other people incorrectly worry that declining CPR means they won’t get any care at the end of life or that they can’t change their mind. Others might just not understand the whole process. And some people (like me) don’t have an advanced directive for the same reason they are late getting their mammograms or getting a dentist appointment- they keep meaning to get to it and then they just forget or maybe it just doesn’t seem that pressing.
If your family has open and healthy communication this process may prove less difficult. If you have a senior who doesn’t like to talk about this stuff or who insists they don’t need this it can be more challenging. Start early, start gently and be persistent. Remind your senior that you want things to be more clear if a health crisis occurs. Another idea is to fill one out for yourself at the same time you are helping your senior. They will feel less is the spotlight and you can kill two birds with one stone mash two potatoes with one fork.
Once you have completed an advanced directive, MAKE COPIES AND DISTRIBUTE WIDELY! Keep one with your senior, give one to your senior’s primary care provider, make a PDF of this and keep it on your phone. My friend’s mom keeps hers in the freezer- both bizarre and handy. No one forgets it’s in such a unique place.
Keep the conversation going, though! This is not a one time conversation. It’s a good idea to revisit it every few years or with a change in health status. They can be changed or voided at any time but remember to redistribute a new one to everyone- even the freezer.
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