Podcast #159 It’s Not Too Late, Until It’s Too Late: How to Start a Conversation – Diane Hullet, Mortality Educator and Doula

It’s all well and good that I keep saying “You should really have conversations about death and dying….” Yet you might be thinking, “What the heck! This is too hard! How am I supposed to even start that conversation?! Please give me some suggestions that can help.” In this episode, I’ll do just that, laying out some ways to think about how to approach this, and even offering up some specific sentence starters you can use, thanks to the treasure trove of ideas shared by The Conversation Project and other resources. (Love a slide presentation? Then watch this one on Youtube for a bonus!)

Transcript:

Hi, I’m Diane Hullett and you’re listening to the Best Life, Best Death Podcast. This week is a little bit unusual. It’s just me talking. I don’t have a special guest. I do have a slideshow if you happen to be watching on YouTube. If you’re listening to the podcast, no worries. I’ll be walking you through the slides and this week’s episode is called How to Start a Conversation.

And I really wanted to dive into this a little bit more because I’ve put up a few episodes that talk about the importance of conversation, but boy, it’s so multi layered and so nuanced. So I wanted to go ahead and have an episode where I just really talked pretty directly about how to start a conversation.

And one thing I want to start with is just by saying it depends on what the conversation is, right? In a way, when I talk about conversation and promote this idea, About having discussions. What I’m really saying is transparency and connection matters, and it matters for the person who is dying, and it matters for the people who love them.

So the individual circumstances. that bring people to these conversations vary so widely that there really is no way to make a generalization about the right timing or the right setting or the right topic. But the point is openness and transparency make such a difference and they make a difference for the people who are dying and they make a difference for the people who are left behind.

So I’m passionate about this but It’s kind of a lot to bite off and talk about because I’m talking about everything from having a conversation about how someone wants to be cared for as they die. And I’m also talking about a conversation about the regrets you might want to share or forgiveness that you might want to share.

And I’m also talking about a conversation that brings forward the relationship and what matters most in that relationship. So. This can be really multi layered, we’re talking about our closest people, we’re talking about those we love, and we’re talking about death, and we’re trying to talk about that directly.

And sometimes that has to do with concrete things, like Gabby Jimenez talked about last week, like her brother wanted socks on his feet. Very specific, all about temperature and comfort and respect at the end of life. But it can also be bigger than that, or broader than that, not something quite so practical.

So when I talk about the importance of conversation around death and dying, it’s really a multi layered, complex conversation that I’m encouraging you to have more than once, in multiple ways, with more than one person. So let’s dig in a little bit more about how to start a conversation. And I really want to begin with just saying, why is this so hard?

Most people find it hard. Why? So let me make a few points here, and then you be thinking in your own mind, why is it hard for you? Why do you think it’s hard for your loved one? Number one, death, dying, illness, fragility. These are difficult, taboo, seldom broached subjects. It’s just not everyday conversation for most people, so it’s hard to get into.

Often, we have a fear of having differing opinions, either we have differing opinions or we fear that we’ll have differing opinions. So perhaps you’re elderly and you’ve recently learned that CPR can be very, very difficult for an elderly person to recover from. And you think, you know, I think if something happens to me, I don’t want CPR done on me.

I don’t want broken ribs and difficulty recovering. If CPR would bring me back to where I’ve been the last few months, sure. But given my health, given my history, given my age, I’ve learned that it probably won’t help me. But I know if I bring this up with my son, he will have a hard time hearing it. Or I fear he’ll have a hard time hearing it because he will want to do everything medically to save my life.

So here’s a difference, uh, a complex medical intervention, often done in a case of emergency, and yet there might be differing opinions, or you fear there’s differing opinions, so that can stop you from having the conversation. A third thing that makes it hard is a history of challenging conversations with the people involved.

I think that’s pretty self explanatory. Many of us, uh, many of us have a history of difficult conversations with those we love. And so, gosh, why would you get into this hard topic? Sometimes we have a fear of saying the wrong thing. We’re concerned about hurting someone’s feelings. Sometimes, we don’t quite know what we want to say.

We know we want to say something, but we don’t know what it is. And we feel there’s something pushing, but how to figure out what it is we even want to say? And will they listen? Sometimes, we don’t quite know where to begin. Although I hope, after listening to this podcast, you’ll have some ideas for where to begin.

What’s your answer to why this is so difficult? If you’re out for a run, or out for a walk, or you’re folding laundry, or you’re driving a car while listening, you might not have a piece of paper handy in front of you, but I encourage you to think about it. If there’s a conversation you’d like to have that you feel pressed, Pressing from the inside that this is important to do.

Think a little bit about why it’s difficult and why it’s so hard. So I’ll give you a few suggestions and then I’ll talk a little bit about outcomes and finally I’ll end with some gentle warnings. So three things. First one. I think it’s important to do some thinking ahead of time and be prepared.

There’s a few things you can think about. One, think about what matters to you. Number two, think about the specifics of what you’d like to cover in this conversation. Number three, write things down. Whether you write things down simply to clarify your thinking, or whether you write things down because you want a little note card because you’re nervous about this conversation and you really want to be sure and make some points.

Write things down. Number four, it can be very helpful to have a preliminary conversation with someone else. Try to make that a productive conversation. You know, go beyond just complaining about how your sibling never wants to have this conversation about Their health and yet you feel it’s really important, but they don’t want to, how can you brainstorm that conversation with somebody else, a friend, a therapist, a different relative, so that you can go into that conversation with some practice.

Think about the optimal timing and setting for this conversation. Sometimes these conversations come up spontaneously, and I love that too. I think it doesn’t always work to have a big sit down, we will all be gathering now and discussing this. Sometimes that’s, that’s not ideal, and I’m not really talking about optimal setting and timing being that you’ve called a family meeting.

Some families work like that, and that might be great. Other families, I’m thinking it’s more like, Hmm, I know that when my mom and I walk, and I know we’ll be taking a walk next Monday, I know that sometimes we can talk about things we might not talk about if we were looking at each other across the kitchen table.

So maybe I’ll bring this up then. Okay, so that’s what I mean by optimal timing and setting. And connected to that, who would you like to have be there in your family for your situation, for what you’re trying to accomplish? Is this the kind of thing where everyone should be gathered? Is this more one on one?

Is this is a couple of you with a couple of them? What’s the best way to do it? Know yourself. and know your audience. Summarizing that is kind of my number two big point, which is make a plan for your talk. And I’ll say four things, which are kind of reiterating what we just went over. What subject do you hope to cover?

What do you hope the outcome will be? When will you do this? and who will be included. And in terms of the outcome, let me encourage you to have, you know, a little bit of openness in your hope for outcome. It may not be that you convince someone who thinks differently than you to agree with you. That will probably not be the outcome of one talk.

But you might be hoping to broach a subject. You might be hoping to mention some options. You might be hoping to share some concerns. This is the kind of outcome, a little bit open ended, a little bit with some give and take. So third, I want to share some sentences that you can start with. And I’ve pulled these from a couple of different places.

I love the conversation project. Excellent website filled with resources. You absolutely can download things from the Conversation Project that will help you with this. And I’ve gleaned some of these from that website. So here’s a few sentences you can start with. I need your help with something. COVID has really made me start thinking about blank.

Can you and I have a conversation about Blank. Here’s another one. I was thinking about what happened to so and so, and it made me realize such and such. Personally, I really like this one. Number one, it’s often true for me that a situation reminds me of another situation and makes me think of things. But also it’s just really a gentle way to go in.

I was thinking about what happened to so and so’s aunt, and she ended up in this really difficult hospitalization situation, which was nothing like what she wanted, and it made me realize we should really call hospice sooner. You know, I read an article recently that people use hospice on average the last week or two of their lives, and it’s intended to be a service that could be utilized for six months.

It made me realize that we might want to consider hospice sooner so that our family has the support, that kind of thing. Here’s another one. This is from the point of view of the person who perhaps has a diagnosis that is terminal. Even though I’m okay right now, I’m worried that blank and I want to be prepared.

Can we talk about some things that matter to me? I need to think about the future. Will you help me do that? Here’s an easy one. I heard about this website called The Conversation Project and I answered some of their questions about things that matter to me when it comes to my care through the end of life.

I’d really like to talk to you about it. When so and so died, how do you think that went? Do you think their wishes and priorities were respected toward the end of their life? With those sentences, and more that you can create yourself, I hope that you can move through what makes this hard and find an opening.

Again, whether your desired outcome is to talk about choices at the end of life, or whether your desired outcome is to talk about, you know, some other aspect of this. So here are some outcomes that hopefully occur. Number one, you’ll share your thinking and create connection. Number two, you’ll listen to others thoughts and wishes.

And if they haven’t written them down, hopefully you’ll encourage them to write them down. You’ll gain insight into loved one’s perspectives. You know, Gabby said, and I think it’s so important, she said, we really want to meet people where they are, not where we want them to be. Keep that in mind as you’re talking to someone.

You’re trying to gain insight into their perspectives, maybe share knowledge that you have. Open up a two way street conversation where. People are being listened to and people feel supported. You’re meeting them where they are, not where you wish they were. Fourth, you can find out what they would want if something were to happen to them.

Have they thought about completing key paperwork? Who would they want making their financial and health care decisions? And this goes back to, again, I think this is so critical. You may have completed your advance directives and written it all down in black and white. And hopefully you’ve designated a medical power of attorney person to make those decisions.

I really want to encourage you to have a conversation with that person. You know, even if it’s in black and white, it makes such a difference. If they have heard you say, this is what I want. And this is what I do not want. You can read it on a piece of paper that mom did not wanna be intubated, but when you’re in a crisis situation and the option is to intubate or not intubate, and the outcome if you don’t intubate is deadly.

This is a terrifying decision to make, and loved ones who are medical powers of attorney have tremendous. pressure on them to understand and make the choice that is in the writing, but it’s the person standing there, the medical power of attorney who makes that choice with doctors. So you really want to be sure that you’ve had conversations that let that person know what you feel.

Often these days, people even make a little video explaining what they want, and it can be really powerful to pull out that little one minute video Of the loved one saying, this is what I want and why in a crisis situation with my health. This is the choice I make that can be tremendously relieving to the person who is the medical power of attorney.

So if number one, if you have finished your paperwork, I salute you. If you have had a conversation with your medical power of attorney person, I double salute you because that is the key is to have both those things in place. A couple of warning labels and other thoughts. Avoid the sledgehammer approach.

Ease into this conversation. This is not about forcing a conversation to happen. Again, meeting people where they are, not where we want them to be. We, the person who thinks a conversation should be had. So you’re avoiding being a sledgehammer while opening the door for this. Consider setting the stage.

You might say something like, we need to discuss something important, and it may be uncomfortable, but as a family, we need to all be prepared in case I get really sick, so you will all know what to do if something happens to me. Uncomfortable? Yes. Honest? Yes. Be aware of varying reactions to death. You know, the attitudes and the beliefs and the relationship we have with the person who is dying impact all of this, which kind of goes back to what I said at the beginning.

There is no one recipe that makes this work. You’ve got to take individual feelings and experiences into consideration. Avoid pushing anyone to talk if they don’t want to. That’s not the point. You’re trying to open a door, not burst a door open. So listen. Pay attention to body language. Stay calm yourself.

Be as present and accepting of what’s happening as you’re able to be. It’s okay to cry. It’s okay to pause and have silence. This is not something we’re well trained by our culture to do. Some of us do it better than others, but know that this is uncomfortable and uncomfortable is okay. This is a probably sad moment, maybe if a very difficult and sad conversation.

But the opportunity in the transparency and the openness of talking, if it’s possible to do so, matters. Bottom line, let the person know that they can talk to you if they need to. Giving people permission to talk in their own time without expectation really matters. Something like, if there ever comes a time when you want to talk, I’m available.

Of course, this gets really tricky when we start talking about age and dementia. And these kinds of things that impair the ability to have conversation or remember conversation, which brings me to my final point. It’s not too late until it’s too late. And this is really the bottom line. It’s not too late to have these conversations.

Often it feels too early to have these conversations until suddenly it is too late. I’ll go back to this slide that talks about some resources. The AARP has a great conversation article called How to Conversation about End of Life Care. Another great article, Seven Tips to Start Talking about Death with Your Family.

Another great article, Five Conversation Starters to Talk about Death, Dying, and End of Life Preferences. There’s a lot of information out there. The AARP is a good resource, hospice websites are a good resource, and the Conversation Project. Excellent place to get more materials like this, so that you can begin to think what works for me, what works for my loved ones, how might we start a conversation.

You’ve been listening to the Best Life, Best Death podcast. Thanks so much for listening. You can find out more about the work I do at Best Life, Best Death. Com.