Cultivating Wellness by Talking About Choices: Advance Care Planning for Everyone Post #4

Hopefully you’ve read my last three posts and now have a good sense of what Advance Care Planning is all about and why it’s so important.  If so, you know that in California, the Advance Health Care Directive includes both a Durable Power of Attorney for Health Care which names your health care agents (decision-makers), as well as a Living Will which outlines your wishes.  The questions it answers are: if you were unable to speak for yourself, who would you want to make medical decisions for you, and what would you want those decisions to be?

My last post, All About Advance Directives, talked about deciding and documenting who you would want to speak for you, and if you need more information about Advance Health Care Directives, take a look at the resources on the Hospice of Santa Cruz website:  Preparing for the Future:  Resources.  If you are in the area (Santa Cruz County), you can also attend their presentations or even get a 1:1 session for additional help.  Maybe you have chosen a primary agent and two alternate agents, so you know who you would want to speak for you, but now you have to start thinking and talking about what you would want them to say on your behalf.  That’s what I’m going to focus on today.

Remember that “Living Will” part of the AHCD?  If you fill out a standard AHCD or do one in Living Trust, the question you will be prompted to answer about your medical wishes is this (or something similar):

Choice Not to Prolong: I do not want my life to be prolonged if the likely risks and burdens of treatment would outweigh the expected benefits, or if I become unconscious and, to a realistic degree of medical certainty, I will not regain consciousness, or if I have an incurable and irreversible condition that will result in my death in a relatively short time.

OR

Choice to Prolong: I want my life to be prolonged as long as possible within the limits of generally accepted medical treatment standards.

This may be a very straightforward question for some–most of us have a reaction one way or another to the idea of being on life support–but for others it may bring up all kinds of questions.  Furthermore, if you are a health care agent or medical provider trying to follow these instructions, imagine the grey areas. Really, think about it. These statements leave a lot to interpretation.  There could be a situation in which brain damage is so severe that the choice is clear, but medical technology can do a lot which makes it harder and harder to know where to draw the line.  And how do you define the “likely risks and burdens” and how they do or do not “outweigh the expected benefits,” and how much “medical certainty” is “realistic,” and how long is a “relatively short time”?  By the way, this is why I recommended the Prepare for Your Care Advance Directive in my last post–it guides you through documenting your wishes in so much more detail than the standard AHCD.

If you are young and healthy, maybe checking one of these boxes to complete your Advance Health Care Directive is plenty…for now.  But if you have a serious or progressive illness, I truly implore you to give your health care agents a little more to work with. (If you read my second post, Why Everyone Needs to Understand Advance Care Planning, I am referring now to that middle section of the pyramid.)  I can’t tell you how many patients I’ve talked to who have told me, “I’ve already taken care of all that:  I told my kids just to pull the plug.” Well, that’s better than nothing, but not exactly everything your health care agents will need to know to really advocate for you.

Once you have decided on your health care agents, it’s not enough to document their names and contact information in an Advance Health Care Directive.  You need to have a conversation with them, and ideally a conversation that goes beyond “pull the plug.”  I heard a story from a colleague about a gentleman who wrote a very lengthy, comprehensive and thoughtful AHCD explaining in detail that he would not want life sustaining treatment if he became very ill, and he promptly put the document in his safety deposit box and discussed it with exactly no one.  As his neurodegenerative disease progressed and he developed dementia, he could no longer make medical decisions, and none of his relatives or health care providers knew anything about who should speak for him or what he would want. Of course he ended up on life support and remained on it for a very lengthy period while his family struggled and guessed and argued about what to do.

The conversation might be the single most important part of this process.  But talking about end of life choices can be tricky. How do you even start that conversation?  If you looked at the resources on the Hospice of Santa Cruz website linked above, you may have noticed the first one was a Conversation Starter Kit from The Conversation Project.  I love The Conversation Project.  Check out the videos on their home page.  Check out their Conversation Starter Kit. There are so many resources here to help you start talking about your wishes.  If you are an adult child wanting to initiate the conversation with your parents, here’s a blog post from the Conversation Project that might be helpful.  I had a patient once who had her whole family over for Thanksgiving and clinked her glass to get their attention at dinner.  She told them all right there at Thanksgiving dinner what she wanted if she became very ill. It was brilliant–everyone got the same message at the same time.  Then they all started talking about their own wishes, and the whole topic was completely normalized with the clink of a fork on a glass.

Maybe you are ready and willing to talk with your health care agents and family members, but you just don’t know what to tell them.  How do you think through your goals and values and how they inform your medical wishes? Well, first of all, what is most important to you in life?  What are the values that have guided your decision making throughout your life? That’s the place to start.

If I were appointed to make medical decisions for you, I would want to know everything about what quality of life means to you.  I would want to know what your goals are–what would life have to look like on the other side of any medical intervention to make it worth it?–and what kinds of situations would be intolerable for you.  Those situations may be the medical treatment itself (“I never want that tube down my throat”) or the situation you are in before or after the medical treatment (“If I can’t recognize my loved ones, I don’t want anything done to make me live longer” or “If I’m going to have to spend the rest of my life in a nursing home after going through that treatment, I don’t want to go through it at all”).  That would be more useful to me than any boxes about any interventions you may or may not check on a form.

If you came to see me in my private practice and wanted to talk through your wishes with your health care agent but didn’t really know how to think about it, this is what we would talk about.  First, I’d want to hear the story of your medical situation from your perspective. What do you know about your medical condition, how has it impacted you, and what do you expect going forward?  That gives us all a picture of your disease trajectory. Then we would talk about what brings you joy, what gives your life meaning, what’s most important to you now. What does quality of life mean to you?  That gives us a sense of your values. Then we would discuss your hopes and your fears. Your hopes shine a light on your goals, and your fears show us what you want to avoid. And finally, I would want to talk about your experiences.  Did your best friend die on hospice or was your mother-in-law on life support or did you do CPR on someone once…? Have you ever been really really sick or been a caregiver for someone who was really really sick? Have you ever had to make medical decisions for someone else?  These experiences shape how you think about your own wishes. This is the kind of conversation that really helps you think through your priorities and prepares your agents for decision making.

One more suggestion that might aid your thinking about these issues as well as discussing them is the relatively new fad of Advance Care Planning decks of cards and “lively party games.”  One deck, called Go Wish, has actually been around for quite awhile, thanks to Coda Alliance. Check them out here: Go Wish Cards.  And in looking into this further, I ran across a whole article about this phenomenon of Advance Care Planning decks, which is what led me think it was a new fad:  Conversation Starter Card Decks.  Then there are the cards that challenge the taboo around talking about death in general, such as “Morbid Curiosity” mentioned in this article as well as The Death Deck.  So that’s one way to break the ice!

But wait, there’s more.  One last shout out to Hospice of Santa Cruz for this amazing tool which I found along with the other aforementioned resources on their website:  Value Assessment Survey.  It’s one of the best things I’ve run across to really help think about what would be most important to you if you were very ill.  Check it out!

As may be obvious by now, I could go on and on about this topic, but I think this is probably more than enough to get you started thinking and talking about what really matters to you.  If you’re ready for more or have any questions, feel free to email me at teresa.quadres@gmail.com.  This may sound daunting, but really once you get started, it’s not so bad.  The more we talk about it, the easier it is to talk about. And most people feel a sense of comfort and relief once they start the conversation.  Next week I’ll wrap up this Advance Care Planning Series with a final post about the POLST, so tune in if you want to learn the nitty gritty about CPR and life sustaining treatments.  Fun!