Janet Seeley was walking out of her father’s funeral with her son when she turned to him and said, ‘Oh, by the way, I want to be cremated.”
Her son looked at her, horrified, and stomped off.
“I thought it was weird he was getting so upset because he had been so helpful with my father’s arrangements,” she said. “But after being trained in doing The Conversation Project, I realized I was starting on the wrong end. If I wanted to have that talk, I needed to start with saying, ‘Here are my values; what really matters to me.’ Instead, I was giving him an image of me being cremated.”
The Conversation Project is a grassroots organization dedicated to helping people talk about their wishes for end-of-life care in an effort to empower people to live and die the way they choose. UCHealth’s Aspen Club in Fort Collins, Greeley and Loveland has adopted these principles and is using its model to help residents have these important discussions with their loved ones.
Seeley grew up in a household that talked about their end-of-life wishes at the family dinner table. She thought such discussions were normal. But she later realized — both as a physician and then with her own son — that not everyone feels comfortable talking about death and dying.
“I was talking to my son like he had been at all those family dinner discussions with me,” Seeley said. “I was going about it all wrong. He didn’t want to hear any suggestion that I might die, or especially that I could become so feeble that he’d have to be making the decisions. He just couldn’t hear it.”
More than 90 percent of people think it’s important to talk about end-of-life care, but fewer than 30 percent actually do, according to the Institute for Healthcare Improvement. However, the Aspen Club and the Sharing the Care Campaign, a group of many Larimer County health organizations, are working to increase the latter statistic. In its first year of adopting The Conversation Project and holding workshops, Sharing the Care, along with the Aspen Club, reached out to more than 500 residents in 2014; more than 700 have participated in the program so far in 2015.
The Aspen Club workshops utilized The Conversation Project starter kit. One of the first steps in the workshop is to explore what is important to a person at the end of life. It’s not about specific procedures, Seeley explained, but general topics, such as how much information people want to know, their desired living situation and how involved they want their family to be.
“As you go through the kit, it talks about quality of life vs. quantity, and what does quality mean to you,” Seeley said. “Then it helps you with planning for that next step — talking about it with important people in your life.”
At the workshops, trained facilitators — of which Seeley is now one — walk participants through the kit then have an open discussion about their answers. Seeley said she continues to benefit from each workshop even though she’s a facilitator.
“I’ve done the training and filled out my advance-care documents, so I was not sure how I’d benefit personally, but then one gal shared that she requested her dog be with her no matter what,” Seeley said. “I hadn’t thought of that. I love plants and I would want people to know that I want fresh plants in my room. … Every program we do there is always this sharing of ideas. It’s very rewarding.”
About four years after her father’s funeral, Seeley asked her son, then 28 years old, to give her two hours of his time for them to have the end-of-life care conversation. She asked that it be her Mother’s Day gift.
“We talked about my will — he had very good questions — then I set the starter kit on the table and started on page one,” she said. The two found a quiet place in a park with a great view of the mountains, Seeley recalled. “I asked him if things made sense to him; we stopped occasionally to wipe the tears. At the end (about 25 minutes later), there was such a feeling of closeness. Once you’re able to have that conversation — to open up and share — it’s like a gift. It was the best Mother’s Day gift I ever had.”
Seeley said holidays are a great time to plan to have the conversation, as families are usually together. One workshop participant began talking about end-of-life matters with her children at 16, when they were deciding whether to be organ donors, she said. But whenever it may be, Seeley said the more tools and practice one has, the better it will go.
The Aspen Club not only provides The Conversation Project starter kit but also helps people with other end-of-life preparations, such as medical durable powers of attorney and living wills.
Find out more about Aspen Club services at 970.495.8560 or uchealth.org/aspenclub.