End-of-life wishes not a topic that should be saved until it's too late

Posted January 22, 2018 7:25 a.m. EST

According to the Conversation Project, 90 percent say talking with loved ones about end-of-life care is important, but only 27 percent have done so.

This story was written for our sponsor, Transitions LifeCare.

On her father's 85th birthday, Maureen Jennings gathered the family -- her brothers and sisters, her dad's grandchildren and great-grandchildren -- to not only celebrate his life, but to talk with him about his death.

Specifically, the family asked her father what he would want -- and not want -- regarding medical care to prolong his life if his condition prevented him from making and stating his own choices.

On that day, Jennings's father was in fine physical condition -- still golfing and enjoying an active lifestyle. And that was the point, he wasn't in a crisis, and the family could rationally discuss with him his wishes and preferences without feeling it was a life-and-death decision on the spot.

Jennings reflected on her experience with her mother, who passed away, to support the importance of knowing her father's wishes.

"If we had gotten hospice involved with mom, maybe she would have been more comfortable," Jennings said. "But I was afraid to bring hospice into the picture because I thought maybe that meant we were giving up on mom, and I didn't want her to feel that way."

According to the Conversation Project, 90 percent say talking with loved ones about end-of-life care is important, but only 27 percent have done so.

The Conversation Project was started by Pulitzer Prize-winning columnist Ellen Goodman after she had the opposite experience than the Jennings family. Goodman never had the conversation with her mother, and when severe dementia set in, it was too late.

Realizing many families are in similar situations, Goodman wanted to make a difficult yet vital conversation easier to broach.

Helpful tools for having and documenting the conversation

"Advance directives" or "advance care plans" are terms used for written instructions a person creates to convey their wishes regarding medical treatment. The directives often contain signed, witnessed and legally binding documents, including:

  • Living Will - Instructs an attending physician to withhold or withdraw medical interventions if you have a terminal condition and are unable to speak for yourself.
  • Durable Power of Attorney for Healthcare - Assigns an agent to make healthcare decisions for you if you’re not able.

For many families, just bringing up such a sensitive topic as death for those they love most can be the biggest challenge. Fortunately, several valuable tools are available to facilitate the discussion:

  1. The Conversation Project Starter Kit offers a step-by-step guide to having the discussion about end-of-life decisions and instructions;
  2. Five Wishes is a document that helps guide the conversation about end-of-life preferences and meets the legal requirements for an advance directive in North Carolina;
  3. is an initiative that started in Wilmington, N.C., and its website offers guidelines and resources for completing advance directives.

"Writing down your advance directives is not only important for your benefit, it's a tremendous gift to your family and friends," said Dr. Laura Patel, chief medical officer of Transitions LifeCare. "These discussions and decisions can be difficult, but they are even harder when a physician has to ask your family member to make decisions if you are too ill to participate."

Patel added, "Your family is left with the burden of trying to figure out what type of care and interventions you want, often worrying they are making the wrong decisions. Families who can look to an advance directive and previous discussions for guidance often feel a sense of relief that they are following their loved one's wishes."

Share and store your written documents

After you've written your advance directives, review them with at least one family member and let them know where you keep the plan filed -- whether printed or electronic documents.

You also may want to give copies to your attorney and primary care physician. In fact, a physician can help you think through your goals of care and how they translate into medical treatments you may want -- or not want.

This story was written for our sponsor, Transitions LifeCare.