National Healthcare Decision Day lands on April 16th every year, and is one of two major online efforts to encourage people to discuss what they want for their end-of-life care options. The other one, Engage with Grace, takes place over the Thanksgiving holiday weekend.
These events have slightly different focuses. National Healthcare Decision Day—right after tax day—encourages people to take the two certainties of death and taxes to heart, document their end-of-life wishes, and talk about them. Engage with Grace, on the other hand, takes place when families are often gathered together around the table and focuses on encouraging discussions about end-of-life care with loved ones.
Last Thanksgiving, I had some excellent chats with my mother-in-law (who has a completed advance directive) about what she wants during her end-of-life care and what quality of life is acceptable to her. As a person who’s worked in healthcare at various points in my career and who’s currently working directly with end-of-life issues, I sheepishly admitted I hadn’t ever completed an advance directive for myself. I swore up and down I’d get one done that long weekend, but tryptophan and torpor won out and I kept right on procrastinating this important task.
But no more! In honor of National Healthcare Decision Day last week, I sat down and completed my very first advance directive. There are several places to download and/or fill out an advance directive. One resource for downloadable, state-specific directives which I recommend to people on an almost daily basis is Caring Connections, an information-packed site by the National Hospice and Palliative Care Organization.
Being a bit of a tech geek, I decided to give a new site I’ve been hearing about a try. What triggered my geek reflex was MyDirectives‘ entire process takes place online through a secure site, and when the directive is complete it’s available to me or my healthcare agents anytime on any device capable of an internet connection. That’s right; there’s an app for that…well, a website you can access through a web browser app on your smartphone or tablet.
MyDirectives has made great use of the online medium for completing this important document. As I was going through the questions, there were helpful videos further explaining the section of the document I was in, and depending on the care option I chose, more information or details for that particular selection appeared in plain English. Additionally, in their section to note other aspects of end-of-life care that are important to me (likes/dislikes, particular things that would give me comfort, my religion, what I want for my funeral, and any other unfinished business) they include the ability to upload audio or video responses to the questions.
The only part of the process which gave me slight pause was electronically signing the document and requesting my witnesses to do the same. Oregon law doesn’t require a notary to certify an advance directive (though, that’s an option in the MyDirective process); so, I had two of my co-workers witness my directive. We’re a small office; it was easy to walk over to them, tell them I had just completed the document, and an email was coming their way. They were also able to confirm I was mentally competent before they electronically signed the document.
I’m confident my directive is actionable, but did they physically witness me signing my directive? Not really. Because of the electronic nature of the process and how my witnesses and I didn’t need to be physically together when signing, I wonder how well my directive would hold up in a court of law if it were challenged.
This does, however, bring about another very important and too often overlooked aspect of advance care planning: discussing your wishes with those close to you. I designated healthcare agents (a.k.a. healthcare proxies), but unless I really talk to them about what I want and my philosophy regarding my own end-of-life care, they might not be sure what to do in certain situations or they might disagree with each other about what I meant in my written instructions. These sorts of disagreements can lead to unfortunate court challenges.
To approach these difficult discussions, it’s helpful to think back to 2010 when Atul Gawande spoke about the four questions he learned from renowned palliative care physician Susan Block for his article “Letting Go: What should medicine do when it can’t save your life?” published in The New Yorker. Though the questions are more geared to talking about options when facing a terminal illness, they’re a great starting point for anyone wanting to learn more about a loved one’s overall thoughts about end-of-life care.
Give it a try. If you were to be or are facing a terminal illness, how would you answer these four questions?
- Do you know and understand your prognosis?
- What are your fears about what’s to come?
- What are your goals—what would you like to do—as time runs short?
- What trade-offs are you willing to make; how much suffering are you willing to go through in order for the possibility for added time?
These questions aren’t as concrete as the ‘do you want this treatment or not’ questions posed in advance directives. But when a patient articulates this information, his or her physician is better able to make an informed recommendation for treatment options. And if my healthcare agents know my answers to these questions, they’d be better able to work with the physician to determine what treatment options would be the best fit for most any situation that arises if I’m unable to express my wishes.
It’s also incredibly important to remember everyone’s perspectives and situations change as we continue to grow. As a child in Idaho living around horses and other animals, I was sure I’d become a veterinarian when I grew up; a friend of mine wanted to be a puppy when she got older. (Pretty brilliant, really. Who doesn’t want to be an adorable creature that gets lots of attention?) Neither of these career aspirations stuck with us as we got older. Things change and so should my written instructions for my end-of-life care.
Advance Directives are living documents. Consider setting an anniversary date to revisit your written wishes to make sure your feelings about end-of-life care are the same as they were a year ago. Some people like to review this on their birthday or a particular holiday. I’ll probably stick with National Healthcare Decision Day since that’s when I completed my first one.
How about you? What steps will you take today to ensure your end-of-life care wishes are understood and honored?
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