The Conversation Project Helps Identify End-of-Life Wishes
Have you had “The Conversation”? Nope, I don’t mean the one about the birds and the bees. This particular conversation is about the other end of the spectrum – dying.
That conversation is hard enough as it is, but it becomes even harder when someone has Alzheimer’s disease. Our family didn’t really have this direct and honest conversation with Mom. Instead, I had to rely on conversations that I had with her when she was in her 60s. “Dorian, I want you to promise me something,” she said. “If I start to become like my mother (who reached late-stage dementia), I want you to take me out to the desert and let me walk off. Then you just drive away and don't look back.”
That’s not quite the conversation that you want to have about a loved one’s wishes, although Mom's statement did provide some outline for how to handle our caregiving decisions. For instance, we knew that we wouldn’t ever allow Mom to have a feeding tube. Fortunately, the combination of chronic obstructive pulmonary disease and Alzheimer’s caused her to succumb a week after she was released from the hospital for a respiratory illness so we never had to endure the mental agony of watching her be unable to eat.
So how do you have this important conversation about end-of-life choices? That’s where The Conversation Project comes in. This effort was founded by columnist and author Ellen Goodman, who didn’t have this conversation with her mother (who died in 2010 at the age of 92 and who had dementia). According to a story in the October 2012 issue of O Magazine, Goodman felt “uncertain, unprepared, blindsided” as she was faced with care decisions and had to make most of them on the fly. The Caregiving Project came to fruition based on conversations that Goodman had with other caregivers who had gone through similar experiences. She pulled together a group of friends and colleagues who worked in medicine, the media and the clergy in order to help her develop The Conversation Project.
The project’s website offers a conversation starter kit that helps people prepare and then have the conversation. “We know that no guide and no single conversation can cover all the decisions that you and your family may face,” the kit’s preface page states. “What a conversation can do is provide a shared understanding of what matters most to you and your loved ones. This can make it easier to make decisions when the time comes.”
The kit includes some eye-opening numbers that underscore the importance of taking time to have these conversations. For instance, a survey by the California Health Foundation found that 60 percent of respondents said it was extremely important to them for their family not to be burdened in making tough decisions about their care; however, 56 percent of respondents had not discussed their end-of-life wishes. This same foundation also found that 80 percent of respondents said they would want to discuss their end-of-life care with their doctor if they were seriously ill. Yet 10 percent had not communicated their end-of-life wishes to their physician. And in another finding, 82 percent of respondents said it was important to put their wishes in writing. However, only 23 percent had actually done so. Finally, the Centers for Disease Control found that while 70 percent of people say they want to die at home, an equal percentage actually do die in a hospital, nursing home or long-term care facility.
So about these conversations – when should you have them? I’d suggest that if you’re a family member with someone who is experiencing memory loss, you need to have these conversations as soon as possible with your loved one before the dementia progresses any further. And the same holds true if you’re someone who has been diagnosed with dementia. And there’s one more person who needs to have these conversations – the caregiver. That’s because there’s nothing that guarantees that your health will hold up through the prolonged stress of the caregiving experience. Therefore, you need to make sure that you have this discussion with your own support group. My motto – the sooner these conversations are had, the better for everyone.
Primary Sources for This Sharepost:
The Conversation Project. (2012). The conversation project.
O, The Oprah Magazine. (2012). The conversation.