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Starting the Conversation About End-of-Life Care

How we want to die is the most important and costly conversation America isn’t having

African-American father and son talking, the conversation project - caregiving

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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 often rests 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 America isn’t having.

Consider the facts

More than 90 percent of people think that it is important to have conversations about end-of-life care with their loved ones, yet less than 30 percent have done so. Similarly, 70 percent of people say they want to die at home, but in reality, 70 percent die in hospitals or institutions.

Planning your final days is never easy, but it’s an invaluable gift to give 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.
Helping families overcome the communication barrier is the goal of The Conversation Project, a public engagement campaign with the mission to have everyone’s end-of-life care wishes expressed and respected.

At the heart of the project is the Conversation Starter Kit, a free downloadable step-by-step guide that helps individuals and their loved ones have “the conversation” about their preferences for end-of-life care. No single conversation can cover all the decisions that a family may face. What a conversation can do is provide a shared understanding of what matters most. This can make it easier to make decisions when the time comes.

There’s a lot to consider, from how much information the doctor should share with the family, to which family member will be the primary decision maker. Thinking through these decisions before a medical crisis — “at the kitchen table,” and not in the intensive care unit — will help you make decisions based on what you value most, without the influence of stress and fear.

There are a million reasons to avoid having the conversation, but it’s critically important and you can do it! Here are some ways to get started.

Icebreakers

“I need your help with something.”
 “I was thinking about what happened to__________, and it made me realize …”
“Even though I’m okay right now, I’m worried that________, and I want to be prepared.”
“I need to think about the future. Will you help me?”
“Remember how someone in the family died — was it a ‘good’ death or ‘hard’ death? How will yours be different?

The following is an excerpt from Conversation Starter Kit (PDF), which gives you a jumping-off point for having this all-important talk with your loved ones or to share your wishes with those who may have to make decisions for you. (Download the complete kit for free at theconversationproject.org)

Get Ready

Finish this sentence, or ask your aging parent 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 even be, “that if doctors recommend palliative care, no one pushes for more treatment.” Sharing your “what matters to me” statement with your family could help them communicate with your doctor and give them peace of mind that they’re following your wishes.

Get Set

Where do you stand on the following end-of-life care issues? (You can answer as if you are the patient, or ask your relative to do so.) Rate your answers on a scale from 1 to 5.

As a patient, I’d like to know …
Only the basics about my condition and my treatment.
All the details about my condition and my treatment.
                            
As doctors treat me, I would like …
My doctors to do what they think is best.                            
To have a say in every decision.

If I had a terminal illness, I would prefer to …
Not know how quickly it is progressing.             
Know my doctors’ best estimation for how long I have to live.

How long do you want to receive medical care?
Indefinitely, no matter how uncomfortable treatments are.
Quality of life is more important to me than quantity.

What are your concerns about treatment?
I’m worried that I won’t get enough care.
I’m worried that I’ll get overly aggressive care.

What are your preferences about where you want to be?
I wouldn’t mind spending my last days in a hospital.
I want to spend my last days at home.

How involved do you want your loved ones to be?
I want my loved ones to do exactly what I’ve said, even If it makes them a little uncomfortable.
I want my loved ones to do what brings them peace, even if it goes against what I’ve said.
                            
When the time comes …
I want to be alone.
I want to be surrounded by my loved ones.

Go!

If you want to share your end-of-life wishes with your loved ones, answer the following questions:

Who do you want to talk to?
Mom, dad, child/children, partner/spouse, sister/brother, member of clergy, friend, doctor, caregiver, other.

When would be a good time to talk?
The next big holiday, at Sunday dinner, before my kid goes to college, before my next big trip, before I get sick again, before the baby arrives, the next time I visit my parents/adult children, at the next family gathering, other.

Where would you feel comfortable talking?
At the kitchen table, at a favorite restaurant, in the car, on a walk, sitting in a park, at my place of worship, other.

Go Further

Below are some other topics to bring up:

  • When you think about the last phase of your life, what’s most important to you? How would you like this phase to be?
  • Do you have any particular concerns about your health? About the last phase of your life? 
  • What affairs do you need to get in order, or talk to your loved ones about? (personal finances, property, relationships)
  • Who do you want (or not want) to be involved in your care? Who would you like to make decisions on your behalf if you’re not able to? (This person is your health care proxy)
  • Would you prefer to be actively involved in decisions about your care? Or would you rather have your doctors do what they think is best?
  • Are there any disagreements or family tensions that you’re concerned about?
  • Are there important milestones you’d like to be there for? (The birth of your grandchild, your 80th birthday)
  • Where do you want (or not want) to receive care? (Home, nursing facility, hospital)
  • Are there kinds of treatment you would want (or not want)? (resuscitation if your heart stops, breathing machine, feeding tube)
  • When would it be OK to shift from a focus on curative care to a focus on comfort care alone?

The Top Three

Take a minute to think about the three most important things that you want your friends, family and/or doctors to understand about your wishes for end-of-life care. Write them down.   

Keep Going

And please remember:

  • Be patient. Some people may need a little time to think.
  • You don’t have to steer the conversation; just let it happen.
  • Don’t judge. A “good” death means different things to different people.
  • Nothing is set in stone. You and your loved ones can always change your minds as circumstances shift.
  • Every attempt at the conversation is valuable.
  • This is the first of many conversations — you don’t have to cover everything right now.

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