What if we actually talked about our end-of-life wishes and values?
By Shannon Burgert
As people reach the last phase of their lives, about 40 percent face medical decisions, but 70 percent of them are not able to make those decisions for themselves. That means roughly a quarter of people will leave their loved ones in a dilemma if end-of-life wishes haven’t been communicated.
Founders of The Conversation Project are trying to open the lines of communication. The project offers help starting conversations about what matters most to people as they near the end of their lives. About 60 percent of people say that making sure their family is not burdened by tough decisions is “extremely important,” and yet only 44 percent have communicated their end-of-life wishes. Advances in medical care often lengthen the time people live once they’ve started to decline, and cognitive dementia is common, affecting one in eight older Americans and almost half of those over 90.
The Conversation Project took root in Boulder County after Pulitzer Prize–winning journalist Ellen Goodman, who founded the national project, visited Boulder last year. Two local healthcare practitioners—Jean Abbott, an emergency-medicine physician who teaches at the University of Colorado Hospital, and Constance Holden, R.N., the former director of Hospice of Boulder County, now called TRU—both have attended many consultations in which patients are critically ill and their families either don’t know what the patient would want or disagree about what should be done. The two women launched a countywide initiative to work “upstream,” helping families start conversations about end-of-life wishes before they reach that phase of life. A small cadre of Conversation Project volunteers speak to a variety of community groups, and coaches work with individuals and families who want help discussing their wishes.
Kim Mooney, who is one of the Boulder group’s advisory board members, also has a consulting practice called Practically Dying. “I am involved in a lot of ‘upstream’ death education and awareness,” she says, “because the facets of death are easier to contemplate when the concept is still theoretical—before you have to think seriously and often in an emergency about your own death or that of a loved one. The Conversation Project is the pivotal point where we begin to gently turn the conversation from theoretical death to personal dying and death, and it skillfully sets the stage for all the discussions that need to follow.”
Questions to Start With
After hearing Goodman speak last year, Holden realized that she and her husband had not done enough to communicate their wishes, despite her experience watching situations go badly at the bedside.
“We had completed advance-directive documents, but they were in a drawer and our adult children did not know where they were, nor had we discussed the contents with them,” Holden explains. “Given the fact that this is a second marriage, we knew that we could avoid a lot of hard feelings and conflicts if we actually talked about our wishes and values.” They did just that two Thanksgivings ago, once the leftovers were put away and the grandchildren were in bed. The founders suggest that conversations include all adult family members to limit conflict when decisions must be made.
The Conversation Project website includes a “starter kit” that offers questions to prompt thinking on medical, emotional and practical issues, as well as tips on how to start a dialogue. What matters most to you at the end of your life? What role do you want your loved ones to play? Are there any family tensions that you’re concerned about? Are there important milestones (such as the birth of a grandchild) that you’d like to meet if possible?The Conversation Project’s starter kit is available in English, Spanish, French and Mandarin at www.theconversationproject.org.
Abbott notes that the project would more aptly be called the “conversations” project because as circumstances shift, wishes may as well. Advance directives, while they are helpful, don’t take into account changing values, current medical and life experiences, and special events. One woman with chronic lung disease asked in her advance directive not to be resuscitated, but changed her mind temporarily because her granddaughter was approaching graduation.
“It’s hard in the abstract to know what you’re going to want,” Abbott says. Having a proxy decision-maker who understands your wishes is important, she adds, and she suggests that someone who can’t imagine life without you may not make the best proxy.
Abbott acknowledges that such conversations can be so hard because “you’re trying to imagine the unimaginable.” But, she says, having this conversation is “a gift to your family, and it also teaches family how to talk about this difficult subject.”
To stay abreast of Conversation Project events, visit http://theconversationprojectinboulder.org/news-and-events.