Dying is not the most comfortable topic of conversation, which is probably why most Americans avoid it. According to a 2012 survey by the California Healthcare Foundation, although 60 percent of people say they feel it’s “extremely important” that their family not be burdened by tough decisions about their end of life care, more than half don’t communicate their end-of -life wishes.
To help people get this difficult yet vital discussion started, Dr. Richard Besser, ABC News chief health and medical correspondent, hosted a tweet chat on the subject yesterday. Experts from The Conversation Project, AARP and Agingcare.com as well as hospice representatives, caregivers and patients from all over the country tweeted out excellent advice and resources during the one hour chat.
The chat transcript is here. And below, four main points our experts and chatters felt were essential for a frank, honest and productive discussion.
Make sure you die the way you want.
Our experts stressed that the time to talk seriously about the type of care you want — or don’t want — is not in the intensive care unit. It’s at the kitchen table while you’re still healthy. Taking about death can be a depressing but tweet chatters pointed out that it becomes even more depressing when you’re no longer able to express your thoughts clearly — or participate in the conversation at all.
“Just remember to talk as a family. Honor the people who will live with your decisions after you’re gone,” the experts from AARP tweeted.
And Kathy Brandt, founder of the National Hospice and Palliative Care Organization’s initiative, Caring Connections tweeted, “I never heard of a family who when faced with decisions wished they hadn’t had the conversation.”
There are many ways to get the conversation started
Many tweeters advocated for doing your homework first; identify areas of concern, talk with other family members and make sure the right people are involved from the get go.
To get others talking about their own end of life wishes, the experts from The Conversation Project suggested asking them to tell you a story or share a letter about the death of a loved one such as a parent or a grandparent. From there you can ask questions and gently lead them into a discussion about their own life and death. This conversation starter kit can help get the ball rolling.
Medical advocate Regina Holliday had a creative suggestion for starting the conversation – greeting cards. She’s been lobbying Hallmark to create a line of “hospice” themed cards because, she said, no one who is terminally ill should have an empty mailbox.
Have an “advanced care directive.” It’s a gift to your loved ones.
An advance health care directive, also known as living will, personal directive, advance directive, or advance decision, is a set of written instructions that legally specifies what actions you want taken if you are too ill or incapacitated to make decisions.
Without a directive, any medical care you receive will be up to family members or, if no relative is available, at the discretion of your medical team. Directives are especially helpful if there is a disagreement about care between family members or between family members and doctors.
As many of the tweet chatters expressed, it’s one thing to have a directive in place and another to make sure it’s honored. They talked about the importance of letting loved ones know where you keep your document in case of emergency. Some even go so far as to carry theirs with them at all times.
“I keep a copy of my advance directives in my bike bag since that is my most likely cause of death at this moment,” Dr. Carolyn McClanahan, founding partner of Life Planning Services tweeted.
Laws covering advanced directives vary. The AARP provided this useful state-by-state map of advanced care directive regulations.
Understand the benefits of hospice.
“The word “hospice” comes from the Latin “hospitium” meaning guesthouse,” Dr. Nick Wasson tweeted.
In our culture we use the term hospice to describe a place and plan for making a dying person’s last bit of life as comfortable and pain-free as possible. The palliative care offered during this time shouldn’t be mistaken for a cure yet it can ease a dying person’s physical and emotional burden.
Because death is often looked at as “failure,” regardless of age or condition, many tweeters say families avoid the discussion of hospice care until the very later stages of a loved one’s illness but wish they’d discussed it sooner. Aging Care experts offered a link to a list of ideas for talking for weaving the idea of hospice into an end of life discussion.
Our Next Health Tweet Chat is Tuesday, February 24 at 1 p.m. ET. We’ll be discussing eating disorders. Joining in is easy. Click here for the details.