New Resources Make It Easier to Talk about End-of-Life Preferences
The statistics are sobering.
Eighty percent of Americans say that if they were seriously ill, they would want to talk to their doctor about how they would like their lives to end. Yet only 7 percent actually have the conversation. Seventy-five percent of people want to die at home but only 25 percent actually do.
Why the disconnect? Why do people put off these conversations, the ones where you express to your family and friends the way you picture your final days? Without these conversations, those left behind are often burdened by the end-of-life decisions not made.
How we want to die: it’s the most important and costly conversation America isn’t having.
“People are way more willing to talk about who will get their possessions after they die than how they will be taken care of before they die,” said Barbara Boone McGinnis, attorney at Elder Law Practice of Timothy L. Takacs. “I had one client come in recently who has spent the last eight years caring for her husband who has Parkinson’s disease. When I asked her what she would do when her husband could no longer eat, she admitted that she hadn’t thought about it. She said ‘I’ll do whatever he wants me to do.’ When I asked her if she had talked to him about it, she admitted that she hadn’t.”
Sadly, scenarios like these are all too common.
McGinnis acknowledges that end-of-life conversations are some of the most difficult we can have. “Having the talk isn’t a once and done kind of thing, it’s an evolution,” she said. “You can always change your mind if you decide that you want something different. The important thing is to communicate. Having a designated person who knows what you want, shares your values and agrees to carry out your wishes is more important than having a piece of paper, which could get lost or be ignored by stressed-out healthcare workers.”
Fortunately, several forward-thinking non-profits and technology companies and even the Federal government have stepped up with solutions that seek to close the gap between those who plan to have end-of-life conversations and those who actually do.
Let’s Have Dinner and Talk About Death
One organization, Let’s Have Dinner and Talk About Death, (www.deathoverdinner.org) encourages Americans to host dinner parties where death is openly discussed. The result is an interactive adventure that transforms a difficult conversation into one of deep engagement, insight and empowerment. Every aspect of party planning is covered: the invitations to send, suggested readings, menu planning, and conversation prompts. “Old recipes, pictures and stories connected with departed loved ones are always great icebreakers,” says Barbara Boone McGinnis, who chose “The Last Day” from Charlotte’s Web for her reading at a Death Over Dinner party she hosted recently. “Favorite family dishes are a great way to remember and honor those who left our lives early. You talk about the dish and the person. Eventually the conversation moves to your own wishes.” And if you can’t talk with spouses, parents, children or friends about death, Let’s Have Dinner and Talk About Death campaign founder Michael Hebb said, just talk with somebody.
The Conversation Project
Too many people are dying in a way they wouldn’t choose, and too many of their loved ones are left feeling bereaved, guilty, and uncertain, say the leaders of Conversation Project, an organization that provides tools, tips and resources that make it easier for people to talk about their wishes for end-of-life care. The Conversation Project provides a starter kit to help people consider when and where to discuss the subject along with key topics to cover. The starter kit also offers ice breakers with prompts like, "I need your help with something," and supportive tips like, "You don't have to steer the conversation; just let it happen." Access the Starter Kit at http://theconversationproject.org/starter-kit/intro/.
The Five Wishes Project is a private non-profit organization that has helped millions of people worldwide plan in advance of a serious illness. Free for use by the public, the Five Wishes form is the most widely used Advance Directive in America. It is written in normal language, has plenty of room for customization, is honored in the State of Tennessee and ends with naming your Healthcare Agent. Access the Five Wishes document at www.agingwithdignity.org.
My Health Care Wishes
My Health Care Wishes is an app that stores Advance Directives, key health information and health care contacts on an Apple or Android devices. The idea behind the app is simple–to ensure that important information is controlled by the individual and available to loved ones at the right time and the right place. The app can also be used to send Advance Directive documents and other key information directly to health care providers by email or Bluetooth. Download the app at www.MyHealthCareWishes.org.
Medicare-Paid End-of-Life Discussions
On January 1, 2016, Medicare began covering advance care planning—discussions that physicians and other health professionals have with their patients regarding end-of-life care and patient preferences—as a separate and billable service provided by physicians and other health professionals (such as nurse practitioners who bill Medicare using the physician fee schedule). Medicare covers advance care planning provided in medical offices and facility settings, including hospitals. More information is available at www.medicare.gov.