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April is a big month! There’s a national day this month that absolutely puts into play one of my favorite sayings and certainly a very belief:
“We can all have a say about how things will go and where will end up.”
The day I’m talking about is April 16 and is called NHDD, National Healthcare Decision Day. NHDD is a nationwide initiative that encourages adults of all ages to plan ahead of a health crisis. It is the day we are encouraged to consider
“Who will speak for me if I am unable to speak for myself?”
That is what I will talk about today, and if you visit my robust Facebook page or are finding me on LinkedIn, then you will see a lot of information, tips, tools, and How To’s – all month long! That’s how important it is to this Patient Advocate – because I see this, or the results of NOT planning as it hits the fan. So often, patients and loved ones are caught unprepared for healthcare fast change and find themselves without power or with less power. So, today we are talking about power! Want some?
Your healthcare decisions, called Advance Directives, are logical and simple to wade through. You have me and many others to assist you, and I will.
But first, do you like history or trivia? Let’s start with the trivia. It’s fun. NHDD is April 16th every year, and we have to smile at its relationship to that old phrase, “Nothing is certain except death and taxes”. Well, traditionally, with April 15th being our day for Tax deadlines in the US, then some follow that up or loosely associate April 16, NHDD, with death, trying to be witty.
But if I told you there were simple steps that you could take to have some power, maintain your independence, and your say – even during your own healthcare emergency- would you be interested?
Advance directives are just that – advance and really are not so much about death as they are for having that say (about how things will go and where you’ll end up) and creating your power and planning for while you’re still here. More on that in a minute.
The History part: In 2008, Nathan Kottkamp, a health care attorney in Virginia, founded National Healthcare Decisions Day to provide clear, concise, and consistent information about health care decision-making to both the public and suppliers/facilities by way of widely available, simple, free, and unified tools (not just forms) to guide the process. It is a Day that we all can all take action and can help call planning to the fore.
Let’s talk about the term ‘advance directive.’ Advance directives include a Living Will, Healthcare Power of Attorney – which is a document with your wishes- and your designation of agents or proxy – the key people you choose to carry out or enable your directives and your wishes.
Advance directives are, as the name implies, done in advance. You think, and you prepare directives. We are directing what we want. Advance directives are legal documents that provide instructions for medical care and only go into effect if you cannot communicate your own directives. That’s not scary. That is designed to give you more say and to extend your wishes. Isn’t that a good thing?
There are actions that are incremental and logical when it comes to creating advanced directives. You will be glad to know there are lots of tools and articles, and videos everywhere. There are lectures and podcasts, events in communities across the United States, and heavily in April. Google “NHDD” and watch it render! I and many are calling to the fore this advance directive thing, especially near April 16, NHDD.
Simply put – because it can be simple – don’t let this overwhelm you. This is something we all can do with a few simple steps:
Think about what we want. Think about what we want if we are incapacitated and unable to express it, and who do we want to speak for us at that time? Who do you want notified? What actions do you want medical providers to take or not? Learn more about DNRs (Do Not Resuscitate) and even DNIs (Do Not Intubate), and the situations and circumstances that may occur. Where does your personal compass land about those times? What do you want?
Now that we’ve thought about our wishes, we need to select or designate our people to carry those wishes out and to enable our wishes. We must select or designate our agents or proxy. (Part of the problem with all this advance directive and any legal stuff is that we have a lot of words dancing around that mean the same thing, like proxy and agent. Which makes me pause for a)
Short rant: Language is important. Too much of it can be a detriment, in my opinion. I will express my approval of the term ‘agent with power of attorney’. I used to wince when someone would refer to a person as “their power of attorney”. It implied or made me think on some level that I had given my power away to another person. Not so! No, I have designated them as my agent! I would rather designate you, and choose my key person than think I’m giving my power away. That’s just me. End rant.
We do that with forms: a Living Will, A Healthcare Power of Attorney, and other healthcare directives. For instance, did you know there is a PAD, a Psychiatric Advance Directive? If that piques your interest, I suggest you look that up.
Create the documents, and I’ll list some more resources to help do that at the bottom of this blog, which will always be available for you on my website.
(We’ve thought, we’ve designated, and we’ve documented). It seems really logical and likely that we must now communicate with our key persons about what we want. How else are they going to know or properly interpret any written documents? We should talk about situational and circumstantial stuff so that if our agent or our providers must act on our behalf that they know and do what we’ve expressed. Makes sense, right?
Another logical and last step is to store your documents where they can be accessed.
- Share your documents with your agents.
- Lodge a copy of your Healthcare Power of Attorney document with your providers. Take one to your primary care physician.
- Have one scanned in your local healthcare system or hospital system if you access care there. Take a copy with you when you go to the hospital, and have it on hand.
- Many people will travel with a copy.
Recently I was both new to my state of residence, my physicians, and my hospital system, so I offered my documents to be scanned. I followed up in my next conversation with my primary care physician’s team, and I asked if they could see them and access them. Yes! When the hospital called prior to my surgery for planning, I asked that representative also if they could see the documents. Yes! That did a lot for my peace of mind and that of my agents as I discussed my upcoming treatment and aftercare (and wishes and storage. I provided new copies of my wishes verbally and in writing).
A few words about storage. Keep it simple. You keep a copy, and you are sharing a copy, right? Have a designated place and one that your agents and loved ones know about. It can be as fancy as an online vault, but then remember everyone must be able to access it, with passwords and PINs and tech abilities… Or, it can be as simple as the top drawer of the filing cabinet.
Plenty of folks, myself included, have told others that they can find my important documents in the top drawer of my file cabinet. If it’s important put it in the top drawer, and they will go there if needed. Do not keep your healthcare information in your safety deposit box. Two reasons: a key is required, and they are only accessible Monday- Friday from 9 AM to 5 PM, think about that.
Bonus Tip: There is one other really good tip. I know y’all love tips, and this one will make sense to you, also.
Revisit your wishes, revisit your documents.
Life happens. Life goes on, and as it does, we change or are changed, and our wishes may also. I often relay what I heard an attorney share in his presentation about legal documents. He said, “I revisit mine on a regular basis, every election year.” You see, he ties it down to something that occurs regularly, much the same as when our time changes to a daylight savings time, we might check the batteries in our smoke detectors. Tie it down to something that will prompt your action.
I cannot stress often enough how important it is to keep up with our own wishes! In my work as a Patient Advocate, I’ve seen too many people who created documents 20 years ago and never touched them again. Over time some of their designated person had become passed away or had become bad actors. They were no longer the best person for the job. Amusing – but not – is the fact that I see people that created documents (and rested on their laurels) “three grandchildren ago”. Things have changed, I’ve changed, and you’ve changed, and likely our wishes also. Let’s confirm or deny, shall we?
This and every April 16, make sure you have done (or are doing) the simple steps:
- Think about what you want.
- Put your wishes in writing and make your designations of your key people.
- Tell them what you want.
- Store your documents responsibly.
Make sure these tools can help your key people do the job you want them to do.
Have your say “about how things will go and where you’ll end up.”
Happy NHDD, Everyone, and ‘Tella friend”, as they say. Read and please share my social media (this email, Facebook, and LinkedIn). You may help someone you know, love, and even someone you may never meet. That, too, is power-full.
If you’d like some help with completing Advance Directives or resources for finding what is needed Nancy consults regarding matters of healthcare navigation, eldercare and successful aging. nancyruffner.com