Conversations about Death and Dying

by Diane Hullet, Founder of Best Life Best Death

Why is it so difficult to have a conversation about the end of life?

How do I get ready for a discussion like this?

What are some actual sentences to truly get me started?

As a death doula and end-of-life guide, I often talk with people about the importance of conversations about death, dying and the end of life.

“Okay,” someone will say. “I know this is important, I get that I should… but how do I start such a conversation?”

Let me explain why these conversations can feel challenging, how to prepare yourself to approach them regardless, and offer you some specific phrases to help you start with confidence.

Many people find a conversation like this hard.

Why? I’ll name five reasons that can make it difficult, and I challenge you, as you read these, to be thinking —

Why is this hard for me?

Why is this hard for my loved one?

1. Taboo topics. Death, dying, illness, fragility. These are difficult, seldom-broached subjects. We live in a culture that is death-illiterate and grief-illiterate, so dying is simply not everyday conversation for most people. It can be hard to know where to begin when the whole topic feels off-limits.
2. Difference of opinion. We may know that we have a different opinion than those we love, or we may fear that we’ll have differing points of view. Either way, worrying about opinions can put on the brakes before you have even begun.
3. History. A history of challenging conversations with the people involved makes us squeamish about opening our mouths. Many of us have a history of difficult conversations with those we love, so why in the world would we want to open up this can of worms?
4. Saying the wrong thing. Sometimes we have a fear of saying the wrong thing. We’re concerned about hurting someone’s feelings, stepping on toes, going too far, not being sensitive to the situation. Read on, brave conversationalist — I hope you’ll feel more confident by the end of this article.
5. Saying nothing feels easier. Sometimes, we don’t quite know what we want to say, and it is simply easier to remain quiet. And will they even listen if we do start to bring these tricky topics up?

These are five common difficulties for people.

What’s your answer to why this is so hard?

“Okay,” you say. “I’ve considered what’s tough about this for me. Now what?”

Six things to do to get ready for a conversation about the end of life:

1. Be prepared. Do some thinking ahead of time. Think about the specifics of what you’d like to cover in this conversation. Are you going for a general understanding? Or are there details you need to share or learn about? What matters most to better understand? Know that this most likely will not happen all at once — what is important to start with? what can be saved for the next time?
2. Write things down. Whether you write things down to clarify your thinking, or whether you write things down because you want a notecard to glance at because you’re nervous — take the time to write things down. It will clarify your thinking.
3. Consider a preliminary conversation with someone else. Sometimes it is helpful to have a conversation ahead of time with someone else — a friend, therapist, minister, relative. You might get a different perspective, and you can go into the conversation with a little practice.
4. Optimal timing and setting. Sometimes these conversations come up spontaneously, but sometimes you have to look for an opportunity. What would be a good time and place for this, and can you see that and act on it?
5. Who would ideally be there? For what you’re hoping to accomplish, is this a one-on-one discussion, or are others involved? Know yourself and know your audience.

“Hmm. I can see how thinking it through a bit can help. But still, when it comes right down to it, what am I going to say?”

Below are some of my favorite “conversation starters” from The Conversation Project, an excellent organization with a website filled with resources for starting a conversation.

Choose one of the following, come up your own, or download their Conversation Starter Guide for a full booklet of helpful sentences to get you going. https://theconversationproject.org/get-started#Your-Conversation-Starter-Guide

• I was thinking about what happened to fill-in-the-blank, and it made me realize fill-in-the-blank.
• Even though I’m okay right now, I’m worried that fill-in-the-blank, and I want to be prepared.
• I was thinking about what happened to fill-in-the-blank, and they ended up in such a difficult medical situation, which was nothing like what they wanted. It made me realize we should 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 best support possible.
• I’d really like to talk to you about something. When fill-in-the-blank died, how do you think that went? Do you think their wishes and priorities were respected toward the end of their life? How do you think it could have gone better?
• COVID has really made me start thinking about fill-in-the-blank.
• 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. Let’s talk about it.

With these ideas — and any others that feel meaningful to you — I hope you’ll find a way to move through what makes this difficult and discover a path to open, honest conversation. While there are no guarantees that it will be easy, I can promise that it will be worth the effort.

These conversations often feel premature until, suddenly, they become urgent. It’s never too early to begin talking about what matters, but one day, it may be too late.