Cultivating Wellness by Talking About Choices: Advance Care Planning for Everyone, Post #2

If you think Advance Care Planning is a dreary chore, read my last post:  Why I’m Passionate About Advance Care Planning.  If you think it is all well and good but not a priority for you to attend to at this point in your life, read this one.

Advance Care Planning is an ongoing process.  People generally think of it as writing an Advance Health Care Directive (AHCD), and that’s a big and important piece of it, but only the first piece.  More pieces become more relevant at different stages of life. Picture a pyramid. The AHCD is the foundation, the first layer. All adults should have an AHCD.  (More about advance directives in my next post.)

As our age increases and/or as our health decreases, our medical picture gets more complicated.  Our quality of life may be changing. Our risk of medical complications may be rising. Our ability to recover from those complications may be declining. Now we really need to start thinking through our medical choices in more depth and with more nuance.  Now it’s even more important that we are having conversations about our priorities. This is the middle layer of the pyramid. There’s not a specific document related to this stage, but it may result in an updated AHCD. (More about this post: Beyond Advance Directives.)

Finally, with advanced age or advanced illness, we need to deal with that top part of the pyramid and make some specific decisions about things like CPR and life support.  These choices might be documented in a POLST or POLST-type form (depending on what state you’re in). (More about POLST choices in a future post.)

So, back to you.  Where do you fit into this pyramid?  If you are young and healthy, you might not think this pyramid has anything to do with you at all.  My next post will hopefully convince you that you do indeed need an AHCD, but still you may be asking why you need to concern yourself with the next two layers, and I see your point.  However, I’d like you to consider the following.

First of all, any of us could be about to set foot onto the express elevator to the next floor of the pyramid at any time.  We don’t always see it coming. Now my wish for you is that you will live a long and healthy life, don’t get me wrong. But maybe someone in your life is sneaking their way to to top floor.  Parents? Grandparents? Maybe you will be asked to make medical decisions for someone. Or maybe you will need to support someone else who is making those kinds of decisions.

How about professionally?  Are you in a role in which a more comprehensive understanding of Advance Care Planning might be helpful?  I’ve worked with countless health care professionals who had huge gaps in their understanding of how all of this works.  Doctors don’t usually get training in med school about how to talk to their patients about end of life care. Recently I heard a story about a professional fiduciary who was struggling to make medical decisions for her client because she did not know the person’s wishes.  Maybe you’re a therapist with a client dealing with these issues. Maybe you are trying to support a co-worker. Advance Care Planning issues can sneak into our work from unexpected directions.

Now I am NOT saying you need to be doing top floor planning while you are on the ground floor of the Advance Care Planning pyramid.  That would NOT be appropriate or useful. That’s why I say Advance Care Planning is an ongoing process. Your goals and values now might look very different in ten years or after ten hospitalizations.  We can adapt to a lot: what may seem intolerable now could be routine and relatively comfortable a few decades from now. And conversely, we may be willing to go through a lot more to live longer now than we would if we were at the end stage of a serious illness with a significantly compromised quality of life.  So I’m not asking for you to plan beyond what’s relevant at your stage of life. What I’m suggesting is that we all need to educate ourselves. We all need to understand all the layers of advance care planning.

Let me give you an example of why I think this is so important for all of us to understand.  I have seen countless POLST forms completed incorrectly. A POLST form tells health care providers whether or not you want CPR, so it’s pretty important to get it right.  Maybe the conversation went like this: “If something happens, do you want us to do everything?” What exactly does that mean, “if something happens,” and what exactly is “everything”?  Or maybe there was no conversation at all beyond, “here, fill out this form and have the doctor sign it.” Now imagine your grandma fills out that POLST form as she’s being admitted to a nursing facility, or your grandpa fills it out at his dialysis center.  Imagine “something happens” and the staff follow the instructions on the POLST, but it has nothing to do with what Grandma or Grandpa would actually have wanted had they fully understood the choices and their implications.

In a perfect world, Grandma and Grandpa would have already had ample opportunities to educate themselves about their options, the likely outcomes of those options based on their medical situation, and how to accurately document their wishes.  In that same perfect world, the medical staff would have provided that education and made sure that the documented wishes accurately reflected informed choices. Short of that, perhaps you would have shown up and said, “Grandma, Grandpa, let’s look at these POLST forms.  I’m familiar with these and what they mean, and I want to make sure that you understand what they mean too, and that we understand your wishes so we can be sure they are followed.”

The more we all educate ourselves about the whole Advance Care Planning process, the more we can not only make sure our own wishes are followed, but also support others in making appropriate and informed choices as the need arises.  We can advocate for ourselves and others and hold the health care system accountable for their part in the process. Some medical institutions are doing great work in this area, so maybe your grandparents had an in-depth, facilitated conversation about medical decisions based on their values, their goals and their medical condition and have those wishes carefully documented.  If that were the case, I would still challenge you to be educated enough to NOT be the relative who shows up saying “Of course she would want this” or “of course he would not want that” when you are not fully informed about what those choices actually mean for that individual.

So wherever you fall on the pyramid of advance care planning, I hope you will take responsibility to explore the whole pyramid.  It’s incumbent upon all of us to pay attention to this work. As we learn more and share what we learn and ask questions, Advance Care Planning will become part of the popular conversation.  It will become a normal part of health care and an integrated part of planning. There are lots of ways to learn more. You can start with my next three posts.