How to Start a Conversation About End-of-Life Care

Planning for your final days is hard, but it's an invaluable gift to caregivers and loved ones

Amy Goyer & Andy Markowitz,

AARP

Comments

En español

Published October 14, 2021

/ Updated April 02, 2024

A man and woman have a conversation while sitting on a bench outside

Stocksy

In this story

Why talk • Prepare • Conversation prompt • Issues to discuss • Logistics • After the talk • Next steps • More resources

Dying is a universal experience. Nearly everyone has a story about a good death or a hard death among those they love. The difference between these experiences may rest on whether we have shared our wishes for how we want to spend our final days.

How we want to die is the most important conversation Americans aren't having. While 85 percent of adults over 45 say they are comfortable discussing death and dying, 7 in 10 say the topic is generally avoided, according to AARP’s 2024 End of Life Survey: Thoughts and Attitudes on Death and Dying.

Planning your final days is never easy, but it's an invaluable gift to your loved ones. Studies show that when there is a meaningful conversation about end-of-life choices, survivors report feeling less guilt and less depression and having an easier process of grieving. These discussions can be among the richest and most intimate that friends and family share.

Preparing for the conversation

Thinking through these issues before a medical crisis — in the kitchen rather than the intensive care unit — will help you and your loved ones make decisions based on what you value most, without stress and fear.

1. What do I need to think about or do before I have this conversation?

2. What concerns do I want to talk about? Are there any topics important to you to settle? (Examples might be getting finances in order, or making sure a particular family member is taken care of.)

Consider having a practice conversation with a trusted friend, or write a letter to a loved one (or even to yourself).

And remember that the conversation might reveal disagreements. That's OK. You'll want to discuss those issues now, not during a medical crisis.

Tips for Starting a Conversation About End-of-Life Care

How to start the conversation

Conversation prompt: Finish this sentence, or ask your aging loved one to do it. “What matters to me at the end of life is …”

An example might be “that I am comfortable and at home,” or “that no one has to disrupt their whole life to care for me,” or “that my kids all work together in making decisions.” It might be, “if doctors recommend palliative care, no one pushes for more treatment.”

Sharing a “what matters to me” statement with your family can help them communicate to your doctors what abilities are most important to you and what treatments are, and aren't, worth pursuing.

It can also give your loved ones reassurance that you understand their wishes.

Issues to address

This list is a starting point; there may be other issues to think and talk about. Your health care team may be able to suggest additional questions.

Keep in mind that you don't have to steer the conversation — just let it happen. You don't have to cover everyone and everything right off the bat. Be patient and give others time to think about what's being said.

If there are disagreements, try not to judge: A “good death” means different things to different people.

And remember, as circumstances change, you and your loved ones can revisit issues.

What do you want the last phase of your life to be like?
Are there important milestones you'd like to be there for (the birth of a grandchild, your 80th birthday)?
How do you want to handle medical decisions? As a patient, how much do you want to know about your condition? If you have a terminal illness, do you want to know how quickly it is progressing?
How much information do you want doctors to share with your loved ones?
Do you want to be actively involved in care decisions?
If you prefer to have a loved one make decision, who do you want involved in those decision? Which family member will be the primary decision maker?
What do you want your medical care to look like? Are there treatments you would want (or not want), such as a feeding tube or resuscitation if your heart stops?
Do you want to continue treatment, no matter how uncomfortable it gets, or is quality of life more important than quantity?
Is there a point you think you might want to move from curing an illness to comfort care alone?
Do you want to spend your last days at home, or are you OK being in a hospice, hospital or nursing facility?
When the time comes, who would you like to be with you?

Additional topics to raise now or at a later date:

Are there financial affairs you want to get in order?

Are there family tensions you're concerned about?

Breaking the ice

Here are some ways the Conversation Project suggests starting a talk about end-of-life care.

“I need your help with something.”

“I need to think about the future. Will you help me?"

“I was thinking about what happened to __________, and it made me realize …”

“Even though I'm OK right now, I'm worried that ________, and I want to be prepared.”

“Remember how ________ died? Was that a ‘good’ death or ‘hard’ death? How will yours be different?”

Setting up for the talk

Once you feel ready to share your end-of-life wishes, or to solicit them from a loved one, think about the basics: who, what, where and when.

Who should I invite? The list could include not just particular family members but also friends, doctors, caregivers, members of the clergy or others.

When should we talk? Do you want to broach the subject at a family gathering — around the holidays, for example? Ahead of major life events like the birth of a child or grandchild, or a kid leaving for college? At the first sign of a significant health problem?

Where should we talk? Around the kitchen table? At a favorite restaurant or park? On a hike or at your place of worship? Choose a setting you think will be conducive to an intimate, open conversation.

After you’ve talked

Congratulate yourself! You've broken the barrier. This initial conversation will hopefully be the first of many. Think about how it went, and how you'd like future talks to go. For example:

How did it make you feel? What do you want to remember about it?

What do you want your loved ones to remember about it?

Is there anything you need to clarify? Something you think was misinterpreted or misunderstood?

What do you want to make sure to talk about, or ask about, next time?

Next steps

Another important follow-up to the conversation is putting what you talked about in writing, in legal documents that will ensure those wishes are respected when the time comes.

Create a power of attorney for health care in which you appoint an agent (commonly called a health care proxy) to make medical decisions for you, based on your expressed wishes, if you can no longer speak for yourself.

Create an advance directive that lays out your wishes regarding end-of-life medical care, including what kinds of treatment you do or don't want.

More resources

The Conversation Project has a downloadable guide developed to give people a jumping-off point for this all-important talk and to help them keep it going over time.

Editor's note: This story has been updated with new information.

%{postComment}%