WIHI: Have You Had ”The Conversation”? Helping Loved Ones Discuss End-of-Life Preferences

Date: January 26, 2012

Featuring:

• Ellen Goodman, Columnist, Author, founding member of The Conversation Project
• Ira Byock, MD, Professor, Dartmouth Medical School; Director of Palliative Medicine, Dartmouth-Hitchcock Medical Center
• Bernard “Bud” Hammes, PhD, Director, Medical Humanities and Respecting Choices®, Gundersen Health System
• Martha Hayward, Lead for Public and Patient Engagement, Institute for Healthcare Improvement

Most of us, if asked, say we care a great deal about will happen to us when we’re at the end of our lives. And yet, because we’d also rather focus on just about anything but death and dying, especially if we’re young and healthy or aging well, we’re all vulnerable to what can transpire by default: spending our last few days in an ICU, even if that’s at odds with our needs and preferences. The reasons for this disconnect are complex but often stem from the fact that individual and family decisions come late, are hashed out during a crisis, and in the very setting — a hospital — that promises high-tech and high-intervention cures for just about everything. 
 
This scenario is slowly starting to change. There are now numerous efforts, some medically-based and many more that are grassroots, successfully promoting alternative perspectives and practices so that people who’d prefer to die at home can do so, and benefit from pain management and comfort over costly and heroic measures. But when you get right down to it, “dying well” is quite personal and, as such, needs to start in a personal place: by having a conversation with the people you’re closest to about how you want to die and how they, surviving friends and family members, can feel okay carrying out your wishes. Equally important: initiating or being open to that conversation, perhaps several conversations, when the circumstances aren’t so fraught and there’s time to digest and reflect and integrate the information.
 
All of this and more are what’s behind a new initiative getting underway in 2012 called The Conversation Project (TCP), which will be discussed on the January 26 WIHI. In collaboration with IHI, award-winning columnist and founding member Ellen Goodman and the project’s team members seek to create a cultural movement with one basic goal: to help every American say what they want at the end of life so that family members and medical providers have the guidance they need to respect those preferences. To get there, TCP wants to normalize discussions that can at times feel “too big to broach” by encouraging loved ones to talk to one another when circumstances aren’t so charged — when everyone is healthy — and the environment is more conducive to a good exchange. Around the kitchen table, for instance, rather than the hospital bed.  
 
To launch a national campaign to bring about this change, Ellen Goodman and members of TCP have turned to many, many experts on death and dying, palliative care, and successful partnerships with patients and families, including two outspoken champions of change on the clinical and community side: Dartmouth’s Ira Byock and Gundersen Health System’s Bud Hammes. With IHI’s Martha Hayward also on board, WIHI host Madge Kaplan invites you to get an early look at a unique initiative in the making from the architects themselves. Increasingly, that’s going to become all of us —­having “The Conversation” and telling others how it went and what we learned in the process. It’s hoped that many will benefit, including health professionals who often find themselves at a loss for words, brought up short by their training, and caught in the cross hairs of their own and others’ conflicting emotions and wishes.