The Conversation Project

A few weeks ago, I was sitting in a doctor's office and I read a little blurb about the Conversation Project in one of the magazines.  So, I sent them an email and Lindsay Hunt the Project Director was gracious enough to answer my questions.

1) Why was the Conversation Project started?

The Conversation Project began in 2009, when Ellen Goodman, along with a group of colleagues and concerned media, clergy, and medical professionals, gathered to share stories of “good deaths” and “hard deaths” within their own circles of loved ones.

Over several months, a vision emerged for a grassroots public campaign spanning both traditional and new media that would change our culture. The goal: to make it easier to initiate conversations about dying, and to encourage people to talk now and as often as necessary so that their wishes are known when the time comes.

In order to make this vision a reality, The Conversation Project began its collaboration with the Institute for Healthcare Improvement (IHI) in September of 2011. IHI is a not-for-profit organization that helps lead improvement of health and health care throughout the world.

Today, The Conversation Project team includes seasoned law, journalism, and media professionals who are working pro bono alongside professionals from IHI who bring a wealth of expertise to the project.

2) When should people start having the conversation? (In other words is there a time when someone is too young?)

There is no such thing as too young or too early. Death is a part of life, and the sooner we start talking about it the better. The California HealthCare Foundation (2012) reported that 60 percent of people say that making sure their family is not burdened by tough decisions is “extremely important.” Fifty-six percent have not communicated their end-of-life wishes. Surveys show 70 percent of people say they want to die at home, but 70 percent die in hospitals or nursing homes.

“Dying at home” means not just where people want to die, but how: in comfort, among people who care about them, and doing what matters for as long as possible. Too few of us have seen our loved ones have what we would call a “good death.” Instead, their deaths often leave us guilty, depressed, and with a sense of apprehension of what our own experience might be.

It’s time for a cultural shift. Rather than avoid the topic, we need to confront it. We need to share our end-of-life care wishes and hopes, and our fears too. That way, adult children won’t be hesitant or left thinking, “Did I do the right thing?”

Together we can make these difficult conversations easier. We can make sure that our own wishes and those of our loved ones are expressed and respected. We need to start talking before it’s too late—at the kitchen table, not in the ICU.

3) Why do you think there is a reluctance to consider the end of our lives other than the obvious fact that we will cease to exist?

Quite simply, it’s a scary thought. Who wants to think about their last day and how they go? Not many. But there is the opportunity to shift it from a scary thought to a planned perspective. Find closure in knowing your children, nieces, nephews, aunts, and uncles know your wishes and will do their best to make sure those wishes are respected. It’s hard to do though.

4) What are the benefits of having the "conversation?"

By having the conversation and openly discussing end-of-life wishes with loved ones, we can help ensure people die as they wish. In turn, family members will have peace of mind knowing that their loved one died peacefully. Our goal is that everyone has a good and dignified death.

In addition, end-of-life discussions are associated with less aggressive medical care near death and earlier hospice referrals. Aggressive care is associated with worse patient quality of life and worse bereavement adjustment. Please visit this study for more information.

5) How would you advise people to begin the conversation?

We advise people to have the conversation in a comfortable and casual setting; this should be a “kitchen table” conversation. Our Starter Kit is a great resource to help families get started and bring their thoughts together in order to have the conversation. Please visit our site here to download a free copy.

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. We want individuals to be the expert on their wishes and those of loved ones. Not the doctors or nurses. Not the end-of-life experts.

It is also important to remember this isn’t and shouldn’t be about only one conversation. You don’t have to cover everything at once, and people’s wishes can change over time. This can be the first of many conversations.

I agree!  So, readers, have you had the conversation?  How did it go?  Any advice to give?