Advanced Care Planning – Tough Conversations

Transcript of Interview: “Advanced Care Planning – Tough Conversations”

Mike Barnes:

There are so many topics that we’ve covered here on Parenting Aging Parents. I feel like we’ve almost got a checklist, but it’s not really that easy, is it?

Kim Barnes:

Not necessarily, and there are so many things that just begin conversations that are not just a one-and-done kind of conversation. Advanced care planning is definitely one of those. Today we are excited to be joined by Garrick Colwell, who helped found a non-profit called kitchentableconversations.org. It was really designed, Garrick, to facilitate these tough conversations.

Garrick Colwell:

Yes, the idea is to be able to educate people on advanced care planning, end of life, what takes place as you approach end of life, and also about what happens after death, which is, of course, grief and mourning.

Mike Barnes:

So today we’re going to focus on advanced care planning. It seems like a really daunting process, and it’s a big thing to cover and so important.

Garrick Colwell:

Yeah, we have to understand that when we face our mortality, which we’re not geared to do and we don’t typically talk about very often, it can be very frightening and scary. People are uncomfortable with that conversation.

Kim Barnes:

And it’s uncomfortable for us, the kids, if we’re talking to our parents about it. Partly because we’re the kids and we’re talking about death with our parents, and partly just because asking those questions is sometimes difficult.

Garrick Colwell:

It is, and I think the thing that is most important is to understand that it is a process. It’s not just getting a bunch of documents together and having them signed, but it’s understanding truly what your loved one wants. How they want their end of life to be ministered to, how they want their end of life to be cared for, and what medical questions need to be answered to ensure they have quality of life right until their last breath.

Mike Barnes:

So how do you start those conversations? I know that we could probably be here all day, but what are some hints for starting those conversations?

Garrick Colwell:

Well, I think that you start the conversation with yourself as an adult who is cared for as parents. I had to really find myself doing the advanced care planning for myself before I could actually sit down and have a conversation with my mom and dad. Once I did, I felt comfortable that I knew what I wanted, and then I could bridge the gap between where I was and my understanding of it and where they might be.
A large part of this has to do with not just thinking that you’re going to have a conversation that you want to have, but really understanding where they are. In other words, how do you meet them where they are?

Kim Barnes:

And the way we do that is just simply understanding that they may be reluctant, in which case you may approach it by saying, “You know, Mom, there’s just something I’ve been working on for myself, and I need your help. I wonder if you would mind sitting down with me and chatting with me about this,” and just engage them in a conversation. But really, forget where they are in relation to their understanding of what they might be considering or have thought about with regards to their end-of-life wishes, and then build from there. Don’t come into the conversation with an expectation that you’re going to have them answer your questions. Come into the conversation with the intention of providing them a safe place to explore this most tender topic.

Mike Barnes:

Because it’s more than just saying, “Hey Mom, hey Dad, I need you to sign this power of attorney. Can y’all do that?” What are some of the good questions that need to be asked and some of the decisions that need to be made?

Garrick Colwell:

A lot of it has to do, of course, with your medical situation and condition. First and foremost is making sure that if at all possible, Mom and Dad understand exactly where they are with their health. What is the trajectory of their illness if they have an illness, and if they do, what can be expected from where they are going and what’s happening with them physically. That may mean sitting down and engaging a doctor, attending doctor appointments with your parents, and having a conversation with the doctor to make sure that your parents really understand what’s going on. From there, you can say, “If we know what’s going to happen or have an idea, then let’s plan for that.”

For example, do you feel that you would want CPR? Do you feel that you want to be intubated and be on a ventilator? Do you want artificial nutrition? Do you want everything done, or do you want to be made comfortable and have the kind of care that would allow you to be like we heard from Barbara Bush in her last few days? She decided to have just comfort care, which is also known as palliative care. These are choices that you sit down and have the conversation about. Are they difficult? They are, but the more we talk about it, the easier it is for that conversation to take place.

Kim Barnes:

I would imagine too, are some of the other pieces of that, do you want to be at home? Do you want to be in hospice at a facility? What are those kinds of things?

Garrick Colwell:

Yes, and it’s important to understand that hospice isn’t giving up. Hospice is about a type of care that is very supportive. I know that when my late wife went into hospice, it was amazing how much additional support was offered and provided. You have an entire team of individuals focused on supporting you spiritually, physically, socially, and emotionally. All these different supports are available to you through hospice. When you’re on hospice, you do receive palliative care, and that’s comfort care. It’s so important to be able to manage what your symptoms are so that your quality of life until the end of your life is as best as it can be.

Mike Barnes:

So in those decisions of do you really want to be at home? Do you want to be in a hospital? Where would you like to be? And the ideas that you mentioned about how much care do you want, how much heroic measures do you want? Do you want us to do everything possible, or do you want us to just make you comfortable? These are some of the questions you’ll ask. What we do in our classes is we basically walk people through what that process is step by step. Advanced care planning is a process, and there are three major steps in that process.

The first is deciding what it is that you want for your care and who will speak for you if you can’t speak for yourself. The second is learning how to have the conversation with your loved ones and your healthcare professional, keeping in mind your healthcare professional is a human being and perhaps just as afraid of mortality, their own death, as you might be in your conversation with yourself. The third, which is the last thing we actually do, is documenting that. We actually create the advanced directives. Advanced directives become a roadmap that you, your loved ones, and your medical professionals can follow to ensure your wishes are honored and respected.

Kim Barnes:

And these are classes that are coming up that are free to attend. So, tell us a little bit about those.

Garrick Colwell:

It’s called the Three D’s of Advanced Care Planning: How to Decide, Discuss, and Document Your End-of-Life Wishes. We have three webinars, each 90 minutes, taking each of the three D’s and breaking them down step by step. You understand exactly how to decide, what to say, who to talk to, and how to make those conversations take place. We also discuss what documents you use, regardless of what state you’re in. There are statutory documents you can use that don’t require an attorney. In the state of Texas, they don’t require a notary public; they just require you to have two competent witnesses. All of this can be done in the comfort and privacy of your own home in conversation with your loved ones. We also talk about how to distribute the documents once they’re created.

These take place in August on the 17th, the 24th, and the 31st, Tuesday mornings from 10:30 to 12. We’ll be doing the series again in September as well as in November.

Mike Barnes:

That’s great. So would this be something that you might consider telling your parents, “Hey, I’m going to be taking part in this, and I’d really love for you to listen in too”? Would that be a way to start the conversation, or do you think it’s better for us to learn and then bring our parents in?

Garrick Colwell:

I love the question. There’s a situation when you do these a week apart. There’s homework, of course. The first session is about how to decide what you want and who your medical power of attorney is. Your homework is to talk to your medical power of attorney candidates. You may have one or multiple before deciding who the person will be, but that’s your job—to go out and talk to that person if possible and practice that conversation. When you come back to the second class, we debrief on how you did. If there are any challenges, we do some troubleshooting.

Between the second and third class, you’re given an opportunity to take that conversation and discuss it with your doctor or, most importantly, with your loved ones. Your homework is to have a conversation with your loved ones about what your wishes are. Again, when you come back to the third class, we troubleshoot and provide an opportunity to share your challenges and how your conversations went.

If you can bring your family together to attend the class, it’s a wonderful way to spend three weeks on the same page, having the same conversations, and learning together. You learn so much about each other that you didn’t know before. It’s very opening, intimate, and a loving way of caring for one another.

Kim Barnes:

Yeah, the homework forces the conversation to happen, making the discussion easier in some ways.

Mike Barnes:

So, what do I tell my mom to help her understand why I think it’s important for us to attend? Can you give me some language for that?

Garrick Colwell:

I think it’s just that: “Mom, I’ve done some exciting things for myself and for Mike, and I want to sit down and share that with you. I’d love to have you come with me and attend the class. Just see what you think. There’s no commitment. It’s free, and you have an opportunity to listen in. Maybe we can chat a little bit about it after and see what you think.”

Kim Barnes:

That’s great. I hope lots of people are able to attend. We really appreciate your help and guidance today. Thank you so much.

Garrick Colwell:

Thank you.

Mike Barnes:

Yeah, for those of us who just want a checklist, right? I want to be able to say, “Okay, Tuesday at seven, Mom, we’re talking about this.” But it’s not quite that easy.

Kim Barnes:

Yeah, and it’s tough conversations. It’s so personal, and it does make you face your mortality.

Mike Barnes:

Yeah, but so, so important. If there’s a topic that you want us to dive into and do interviews about, please let us know.

*This transcript is auto-generated. Please excuse any typos or mistakes.