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

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

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En español | 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 and costly conversation Americans aren't having. Consider these facts:

  • Ninety-two percent of people think it is important to talk about end-of-life wishes with their loved ones, but only 32 percent have done so, according to a 2018 survey by the Conversation Project, which works to promote greater discussion of end-of-life-care.

  • One in 5 said they've avoided the subject out of worry about upsetting their loved ones.

  • Ninety-six percent of people 65 and older consider it important to put in writing their wishes for medical care in case of serious illness, but only a quarter have shared such a document with a doctor, a 2017 Kaiser Family Foundation study found.

  • A sizable majority of people say they want to die at home, but 60 percent die in hospitals or institutions.

Planning your final days is never easy, but it's an invaluable gift to your loved ones. These discussions can be among the richest and most intimate that friends and family share. 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.

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

Helping families do that is a key goal of the Conversation Project, which Pulitzer Prize-winning writer Ellen Goodman cofounded in 2010 after serving for many years as caregiver for her mother.

Here's a plan for getting started, drawn from Your Conversation Starter Kit, a downloadable guide developed by the Conversation Project to give people a jumping-off point for this all-important talk and to help them keep it going over time.


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Get ready

It's fine to spend some time thinking about the conversation before you dive in. As you prepare, ask yourself these questions:

  1. What do I need to think about or do before I feel ready to have the conversation?

  2. What particular concerns do I want to be sure to bring up? (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 writing 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.

Get set

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 they're following your wishes.

Give some thought ahead of time to these care issues, for yourself or for a loved one you serve as a caregiver.

  • As a patient, how much do you want to know about your condition? Just the basics? All the details? Something in between?

  • How much information should doctors share with your loved ones?

  • Which family member will be the primary decision maker?

  • If you have a terminal illness, do you want to know how quickly it is progressing? How much time doctors think you have to live?

  • Do you want to get treatment indefinitely, no matter how uncomfortable it gets, or is quality of life more important than quantity?

  • Do you want to spend your last days at home, or are you OK being in a hospital or nursing facility?

  • When the time comes, would you rather be alone, or surrounded by loved ones?

Go!

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.

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?"

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

When would be a good time to 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 would you feel comfortable talking? 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.

What do you want to be sure to say? List the three most important things you want family, friends or doctors to know about your end-of-life wishes and incorporate them into the discussion.

Specific topics to raise might include:

  • What do you want the last phase of your life to be like?

  • Are there financial affairs you want to get in order? Family tensions you're concerned about?

  • Whom do you want (or not want) to be involved in your care and in making decisions on your behalf?

  • Would you prefer to be actively involved in care decisions or to have your doctors do what they think is best?

  • Are there important milestones you'd like to be there for (the birth of a grandchild, your 80th birthday)?

  • Are there treatments you would want (or not want), such as a feeding tube or resuscitation if your heart stops?

  • When would it be OK to shift focus from curing an illness to comfort care alone?

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.

Remember that nothing is set in stone. You and your loved ones can revisit issues as circumstances change. If there are disagreements, try not to judge: A “good death” means different things to different people.

Keep going

Congratulations! 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?

  • Whom do you want to talk to next time?

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

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.

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