Organize the Essentials
Advance care planning is a critical essential to address
If that title sounds a little familiar, it’s because that’s the name Mom gave my company many years ago.
It was 2008, and I’d had an itch to start my own business for some time, but didn’t know exactly what I wanted to do.
When I learned that professional organizing was actually a thing, I jumped in with both feet, since organizing stuff is something I love to do.
With visions of the shoeboxes full of medicine bottles in total disarray that I’d encountered over the years in patients’ homes - and the blank look I’d often received when asking someone to tell me their health histories or wishes for care - I decided to focus my work on health information organizing and estate information organizing.
Which is how Mom came up with the name.
Although I don’t provide those services in my business anymore, I’m still passionate about the concepts.
Which is why I’d like to talk about one essential we all should organize: communicating our wishes about what we do and don’t want done when it comes to our healthcare.
Aka, advance care planning.
Being ready for the unexpected
You may think my work as a hospice nurse is what fuels my passion to talk about death and dying.
While that’s partly true, what’s more the case is that experience has helped me be comfortable talking about death and dying.
However, what really creates a sense of urgency for me in this context is that too many people think nothing unexpected will happen for which they should prepare. And that’s based on my experience witnessing so much tragedy while working in critical care.
That’s one of the reasons I’m passionate about this topic, and why my debut novel, Final Moment, is about the last 60 seconds before death.
None of us knows when our final moment in this world will arrive, which is why we need to be prepared on a variety of fronts.
After all, any of us could face what Jeanne Smith experienced in 1976, when her husband and father of their two young children died unexpectedly in a car accident the night before a routine surgery for a hernia repair.
In preparation for his surgery, he’d organized all the essentials Jeanne would need in case something happened to him during the procedure.
So when this unexpected tragedy occurred, the loving gift her husband had prepared helped her through the mountain of responsibility she was suddenly required to deal with in the midst of her grief.
You can read more about Jeanne’s experience on her website, as well as the resources offered there. Long-story-short, this experience eventually led to the creation of her business, Exit Stage Right, and she became a pioneer in the field of estate organizing.
I met Jeanne in the fall of 2008 when I attended one of her trainings - and came away with an even greater resolve to help others be prepared.
Helping you prepare
Someone asked me recently what I’m most passionate about.
My response?
Helping people know Jesus before they die.
In that context, I’d love to connect with anyone who is facing end of life and doesn’t yet know Him as Savior and Lord.
If that’s you, please DM me.
But another thing I’m passionate about is helping individuals remain in control of their healthcare, which is what advance care planning is all about.
Although considering and discussing the potential for unexpected health events for ourselves and our loved ones may be uncomfortable, these are such critical conversations to have.
Otherwise, we run the risk of placing our fate in the hands of a healthcare system that typically defaults to doing anything that’s needed to extend someone’s life, regardless of what that might mean.
Don’t be maudlin, Sue
That’s what Mom told me one day when I was apparently gazing at her with sadness.
Her health was in the midst of a steep decline, and I remember what I was thinking at that moment: how much I was going to miss her when she was gone.
Through tears, I told her that.
Honestly, I don’t remember her exact response, but we likely teased each other about her use of such a word.
We were both word nerds, so we often had fun with out-of-the-ordinary vocabulary like that.
Another high-brow favorite?
Accoutrements, a term she playfully used to refer to the fancy scarf I’d given her for Mother’s Day several weeks before she died.
As I was repositioning her one day and rolling her onto her side, I heard the twinkle in her tone as she said, “Where are my accoutrements?”
Yes, even as my mom was in her final weeks and days, we were still having fun. 😊
And some of that was possible because we’d already dealt with the hard stuff.
Mom had completed her advance directives years before, so I knew exactly what she did and didn’t want done.
And though we’re relatively young - which feels increasingly questionable – my husband and I completed our advance directives many years ago.
The nuances of advance care planning
Advance care planning is a process of discussing, determining, and documenting what an individual wants in the context of healthcare treatments in various situations.
This concept is so important that in 2016, the U.S. Centers for Medicare and Medicaid (CMS) started reimbursing healthcare providers for having advance care planning discussions with their patients.
Creating advance directives is one component of advance care planning.
Advance directives are legal documents a person creates that outline their wishes for care if they’re unable to speak for themselves.
They include a living will and the designation of a healthcare surrogate (which may also be referred to as a healthcare proxy or a medical durable power of attorney, among other terms).
This designated person can be anyone an individual trusts to abide by their wishes if they’re unable to speak for themselves.
Anyone can complete their own living will, and organizations like the National Hospice and Palliative Care Organization (NHPCO) offer state-specific forms you can download for free.
Although those who’ve created a living will sometimes assume they also have a Do Not Resuscitate Order (DNR), the two are very different documents.
Unlike a living will that a person can create on their own, a DNR is a medical order that must be completed in collaboration with the patient’s healthcare provider, who must sign it.
Another type of medical order in this context is POLST, which is a Portable Medical Order that offers more options than a DNR.
POLST may be referred to by other names, depending upon the program involved, and is only recognized in certain states. Additional information is available on the National POLST Collaborative website.
If you don’t yet have advance directives in place, I encourage you to consider doing so and letting your loved ones know.
And if you’re struggling to initiate these conversations with a loved one who doesn’t have their own advance directives in place, check out The Conversation Project. They offer some wonderful resources that can help you get started.
Have questions or need more help?
Leave me a comment and let me know.
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Disclaimer: This content is for educational purposes only and is not medical advice. You should always consult with your own healthcare professional and/or other experts as appropriate for your individual needs.
I'm glad you wrote this too - for my mother, we had to reverse everything at the hospital after her stroke. She ended up in hospice and had a (mostly) peaceful death. I shudder when I think of putting a food peg into an elderly person with stage 7 dementia. Now my father is stage 5, and we have his advanced directive all set. Hard conversations but they are the only humane way to do things.
I'm so glad you wrote and published this article, Sue -- I just don't think it can be said enough. It's a bit of a project to tie everything up neatly and to make sure it expresses wishes clearly. But it's nothing like the mess that's created at life's end if it's NOT done. Fingers crossed that a significant number of people start & finish the planning. 🤞Thanks for a terrific reminder!