Talking to Your Loved Ones About End-of-Life Wishes

Opening

My father, James, was a master of the conversational sidestep, especially when it came to anything that touched on his own mortality. He was a man who could talk for hours about history or politics, but if the topic veered towards his own future, his own wishes, a curtain would fall. He’d say something like, “How could I possibly know how I'd feel in that situation in the future?” He wasn’t being difficult; he just could not wrap his head around the future that we would eventually come to.

And yet, there was one conversation that broke through. I had been reading Atul Gawande’s book, Being Mortal, and it had a profound impact on me. One afternoon, I brought it up with my dad. I wasn’t trying to force a big, heavy conversation. I was just sharing something that had moved me. And for some reason, on that day, he was open, and in that conversation, he gave me a priceless gift. He told me, with a simple, unadorned clarity, that if he couldn't continue to live physically in his own home - if his medical needs became so great that he could only survive in 24-hour care in a nursing home - that he wouldn't want to go on. That one sentence, that one moment of shared vulnerability, became our guiding light in the dark days to come.

That experience taught me that these conversations are not about dying; they are about living. They are about understanding what matters most to the people we love, and what matters most to us. They are about closing the gap between what we know in our hearts and what we say out loud. My father’s reluctance to talk left us with a legacy of questions, a burden of guesswork. But his one moment of openness left us with a legacy of peace. It’s a conversation I wish we’d had a hundred times over. And it’s a conversation I want to help you have with the people you love.

Problem Statement

The problem is silence. A profound, culturally ingrained silence that surrounds death and dying. We are so afraid of upsetting the people we love, of being seen as morbid or pessimistic, that we avoid the one conversation that could save them from a world of pain. A 2018 study by The Conversation Project found that while 92% of Americans say it’s important to discuss their end-of-life wishes with their loved ones, only 32% have actually done so. [1] This is a staggering gap between intention and action, and it’s a gap that is filled with confusion, conflict, and guilt.

When we don’t talk about our wishes, we are leaving our loved ones to navigate a medical and ethical minefield in the dark. They are forced to make life-and-death decisions based on scraps of memory and guesswork. This can create deep and lasting rifts within families. One sibling may believe that “Mom would have wanted to fight to the very end,” while another may be convinced that “She would never have wanted to live like this.” These are not just disagreements; they are profound moral and emotional crises, and they can tear families apart.

The silence also has a devastating impact on the quality of care that people receive at the end of their lives. When doctors don’t know what a patient’s wishes are, they are often legally and ethically obligated to pursue aggressive, life-prolonging treatments, even when those treatments may be causing more harm than good. This can lead to a final chapter that is filled with unnecessary pain and suffering, a chapter that is a betrayal of the life that came before it. The conversation about end-of-life wishes is not about giving up; it’s about taking control. It’s about ensuring that your final days are a reflection of your values, not a reflection of a system that is designed to prolong life at any cost.

Main Content

Section 1: Why This Conversation is So Hard (and So Important)

Let's start by acknowledging the elephant in the room: this is not an easy conversation to have. For my father's generation, talking about death was seen as tempting fate, as if speaking the words could somehow make it happen. For many of us, it feels like a betrayal of the optimism that we are supposed to feel about the future. We worry that we will upset our loved ones, that we will cast a dark cloud over a perfectly good day. We worry that we won't know what to say, that we will stumble over our words and make a mess of it.

These fears are real, and they are valid. But they are also surmountable. And the reason we must surmount them is that this conversation is one of the most profound acts of love we can offer to our families. It is an act of trust, an act of intimacy, and an act of profound generosity. By sharing your wishes, you are lifting a terrible burden from the shoulders of the people you love most. You are giving them the freedom to grieve without the added weight of uncertainty. You are giving them the peace of knowing that they are honoring you.

And this is not a one-way street. When you ask your loved ones about their wishes, you are giving them a gift as well. You are giving them the opportunity to be heard, to articulate what matters most to them. You are opening a door to a deeper level of understanding and connection. This is not a conversation about death; it is a conversation about life, and how to live it well, right up to the very end.

Section 2: Finding the Right Time and Place: Setting the Stage for a Good Conversation

The timing and setting of this conversation can make all the difference. You don’t want to spring it on someone in the middle of a stressful day or a family argument. You want to create a space that is calm, relaxed, and free from distractions.

• Look for natural openings. The conversation with my father was sparked by a book I was reading. Other natural openings could be a news story, a movie, or the death of a friend or celebrity. These external events can provide a gentle, less personal way into the conversation.
• Choose a quiet, comfortable setting. This is not a conversation to have in a crowded restaurant or with the television blaring. Find a time when you can be alone and uninterrupted. A walk in the park, a quiet evening at home, or a long car ride can all be good settings.
• Don’t try to do it all at once. This is not a one-and-done conversation. It’s a process. Think of it as a series of small talks, not one big, heavy one. You can start by sharing your own wishes, and then ask your loved ones if they have ever thought about theirs.

Section 3: Conversation Starters: How to Break the Ice

Sometimes, the hardest part is just getting started. It can be helpful to have a few conversation starters in your back pocket. The Conversation Project has a wonderful, free guide with a list of questions to get you started. [1] Here are a few of my favorites:

• “I was just reading this article about end-of-life planning, and it got me thinking…”
• “I know we haven’t talked about this before, but I want to make sure I understand what’s important to you.”
• “If you were ever in a situation where you couldn’t speak for yourself, what would you want me to know?”
• “What does a good day look like to you?” This is a great, non-threatening way to start a conversation about values and quality of life.

It can also be helpful to frame the conversation in terms of your own wishes. For example, you could say, “I’ve been thinking about what I would want if I were ever seriously ill, and I’d like to share my thoughts with you. I’d also love to hear what you’ve been thinking.” This can make the conversation feel less like an interrogation and more like a shared exploration.

Section 4: What to Talk About: The Key Elements of the Conversation

Once you’ve broken the ice, what should you talk about? The goal is to get a clear understanding of your loved one’s values and wishes. Here are the key areas to cover:

• The Healthcare Proxy: Who do they want to make medical decisions for them if they are unable to speak for themselves? This is the single most important decision they will make.
• Their Definition of a Good Quality of Life: This is the heart of the conversation. What makes life worth living for them? Is it being able to recognize their family? Is it being able to live in their own home, as it was for my father? Is it being free from pain?
• Their Wishes for Medical Treatment: Talk about specific treatments, like CPR, ventilators, and feeding tubes. Do they want everything done, or are there certain treatments they would want to refuse?
• Their Funeral and Burial Wishes: This can be a gentler way to ease into the conversation. Do they want to be buried or cremated? Do they have any preferences for their funeral or memorial service?

Section 5: A Guide for Listening: How to Be a Good Conversation Partner

This conversation is as much about listening as it is about talking. Your role is to create a safe space for your loved ones to share their wishes without fear of judgment. Here are a few tips for being a good listener:

• Ask open-ended questions. Instead of asking, “Do you want to be on a ventilator?” ask, “How do you feel about being on a ventilator?”
• Listen more than you talk. Your goal is to understand their wishes, not to impose your own.
• Don’t be afraid of silence. Sometimes, people need a moment to think. Don’t rush to fill the silence.
• Summarize what you’ve heard. This shows that you are listening and gives them a chance to clarify anything you may have misunderstood.
• Thank them for sharing. Acknowledge how difficult this conversation can be, and thank them for their trust in you.

Actionable Takeaways

1. Download The Conversation Project’s starter kit this week. It’s a free, invaluable resource that will give you the confidence to start the conversation. [1]
2. Identify a natural opening. Look for a news story, a movie, or a personal experience that you can use to gently broach the subject with a loved one.
3. Share your own wishes. The easiest way to start the conversation is to talk about what you want. This takes the pressure off of your loved ones and makes it a two-way street.

CTA

This is the most important conversation you will ever have. Don’t wait. The End of Life Playbook can help you document your wishes and share them with your loved ones, ensuring that your voice will always be heard. Start your playbook on endoflifeplaybook.com

References

[1] The Conversation Project. (2018). The Big Picture: How We Talk About End-of-Life Care. https://theconversationproject.org/wp-content/uploads/2018/12/TCP_2018_National_Survey_Report_FINAL.pdf

Section 6: When the Conversation Doesn't Go Well

Not every conversation will go smoothly. Some people will be resistant, dismissive, or emotional. Some will refuse to engage with the topic at all. If this happens, don't give up. Here are some strategies for navigating difficult conversations:

• Accept their resistance without judgment. People have different comfort levels with discussing death. Your job is not to force them to talk, but to create an opening for the conversation.
• Try a different approach. If the direct approach doesn't work, try an indirect one. Instead of asking "What would you want if you were dying?" ask "What's the most important thing in your life?" or "What makes you happy?"
• Involve a third party. Sometimes, a conversation with a counselor, a religious leader, or a trusted friend can help break through resistance.
• Give them time. Not everyone is ready to have this conversation right now. Plant the seed, and come back to it later.

The goal is not to have the perfect conversation; it's to start the conversation. Even an awkward, incomplete conversation is better than no conversation at all.

Section 7: Documenting the Conversation: From Words to Action

Once you've had the conversation, the next step is to document it. This is where the conversation moves from the realm of the personal to the realm of the legal and practical. Here are the key documents that should emerge from your conversations:

• An Advance Directive: This is the legal document that outlines your medical wishes and appoints your healthcare agent.
• A Will or Trust: This is the legal document that outlines how you want your assets to be distributed.
• A Letter of Instruction: This is a personal letter to your family that explains your wishes, your values, and your hopes for the future. It can be as simple or as detailed as you want.

By documenting your wishes, you are transforming a conversation into a legal reality. You are ensuring that your voice will be heard, even when you cannot speak.

Actionable Takeaways

1. Pick one person and schedule a conversation this week. Don't wait for the perfect moment. Just pick someone you trust and set a time to talk.
2. Use a conversation starter from The Conversation Project. Having a specific question or prompt can make it easier to break the ice.
3. After the conversation, send a follow-up message. Thank them for the conversation and share one key thing you learned. This keeps the conversation alive and shows that you value what they shared.

CTA

This is the most important conversation you will ever have. Don't wait. The End of Life Playbook can help you document your wishes and share them with your loved ones, ensuring that your voice will always be heard. Start your playbook on endoflifeplaybook.com

References

[1] The Conversation Project. (2018). The Big Picture: How We Talk About End-of-Life Care. https://theconversationproject.org/wp-content/uploads/2018/12/TCP_2018_National_Survey_Report_FINAL.pdf