Tuesday, January 21, 2014

How Do We Begin Conversations About The Care We Want At The End of Life?

If the content of daytime television talk shows is a guide, Americans are far more comfortable publicly discussing almost any aspect of their intimate lives than they are the irrefutable fact that they will die.

While we intellectually understand that we will not live forever, acknowledging that fact by talking
about it with loved ones is nonetheless an incredibly difficult thing for most of us to do. It is almost as if we have a superstitious belief that if we don't talk about it, it won't happen.

Yet, candid conversations with family members and close friends about the kind of care we wish to receive at the end of our lives may be one of the most valuable gifts we can give them.

And because that end sometimes comes suddenly and unexpectedly as well as from illness, these discussions are as important for 20-somethings as they are for older adults.

While we may know the value of such conversations, many of us are uncertain about how to initiate them and what to talk about once we do. That's why I was pleased to discover that The Conversation Project offers resources to help initiate these important discussions.

The Conversation Project offers a free "Welcome to the Conversation Starter Kit," which begins: "It's not easy to talk about how you want the end of your life to be. But it's one of the most important conversations you can have with your loved ones."

"This Starter Kit will help you get your thoughts together and then have the conversation."

"This isn't about filling out Advance Directives or other medical forms. It's about talking to your loved ones about what you or they want for end-of-life care."

"Whether you're getting ready to tell someone what you want, or you want to help someone else get ready to talk, we hope the Starter Kit will be a useful guide."

"We want you to be the expert on your wishes and those of your loved ones. Not the doctors or nurses. Not the end-of-life experts. You."

In addition to the Conversation Starter Kit, I recommend Five Wishes and Go Wish, both of which were described in an earlier post, to develop a better understanding of the type of care one desires at the end of life.

Have you initiated conversations about end-of-life issues with loved ones, and if so, how did you begin them?

This blog entry was written by Dennis Sparks, Arbor Hospice volunteer. You many contact Dennis by commenting below or emailing him at thinkingpartner@gmail.com.


  1. Thanks, Dennis. I did not know this existed. I think I might give a speech at Toastmasters about hospice, and this would be a good resource to offer people.

    1. What a great way to spread the word about this important subject, Lorri, and I'm pleased that this post introduced you to a new resource (I just learned about it recently myself).

  2. “Everybody has got to die, but I have always believed an exception would be made in my case.”
    ― William Saroyan

    I use the William Saroyan quote whenever the subject of death comes up. Of course, I didn’t believe it, but I’ve lived my life as though it were true. I think most of us do. But with advancing years, open heart surgery scheduled, and recovering from recent bladder cancer surgery, plus the gentle urging of Hospice volunteer and friend, Dennis Sparks, I knew I had to face reality. Death takes us all.

    So over the holiday break, when my daughter and son and their families were here, I told them of my wishes for my death. I’d read Five Wishes, have written advanced directives, have my affairs in order, and generally feel satisfied that I’d completed everything but THE TALK. I know of families torn apart from misunderstandings over care of a loved one, of people hooked up to medication, but who are unresponsive, or people who are kept alive by all means no matter how cruel.

    In the hubbub of family gatherings, I wanted my wife, son, and daughter together and without interruption. I didn’t mind if my son or daughter’s spouse was present. I told each that I wanted to see them the next day. They didn’t know what the topic was, specifically, but they knew I thought it important. I reminded them later of our appointment. When everyone was available, I asked them to meet with me in a bedroom of our condo. I explained the reason for the meeting, that I didn’t want any misunderstandings over my death, that my wife understood what I wanted, that, while I would prefer cremation or my body donated to a hospital, that I believed it was for the living to decide. I said that I didn’t want to suffer in a losing battle against death.

    I said all that and more. My daughter teared up immediately. My son looked stunned. They asked questions and assured me that I still had a long life ahead. When we finished talking I said that I had no plans to die, and I referred to the Saroyan quote. Everyone laughed and hugged. We talked some more about what I’d said and took a few minutes to recover and to rejoin the rest of the family.

    I felt that I’d completed my end-of-life care arrangements. There should be no misunderstandings.

    1. Thanks, Mike, for sharing your story with others who may find encouragement in it to do the same with their loved ones.

    2. As a retired school social worker I have been sharing these insightful and informative blogs with family, friends and colleagues. Some are in the medical professions, one is a geriatric social worker, but regardless of position all are caring beings who, in turn, are utilizing the ideas , concepts and supportive sharing. An outstanding resource for all. Thank you!

    3. Hi Pat, Thank you so much for sharing your blog posts! It's great to know that what we are posting is useful.