Few things are as certain as the end of life, so why is it so hard to talk about? According to Brian Carpenter, the best time for families to have conversations about dying – and living – is right now. Here’s how to get started.
Not your average dinner party
In early December 2015, psychologist Brian Carpenter will welcome friends and colleagues into his home for a potluck dinner. As you may recall, it’s cold in St. Louis in December – the nine guests will likely be holding their homemade casseroles or desserts in gloved hands. Like any potluck, after grabbing a plate and perhaps a glass of wine, the friends will join together around the dinner table. However, unlike most social gatherings, their conversation will not revolve around work or children or life at home. The point of this party is to talk about death.
Throughout the evening, Carpenter and his guests will take cues from Death Over Dinner, a recently launched nonprofit organization and website. Starting with the belief that the transition from life to death is “the most important and costly conversation America isn’t having,” founder Michael Hebb created the platform to help facilitate discussions about what it means to live and how you want to die. The website provides articles, videos, and podcasts – things like advice from Steve Jobs and a passage from the children’s book Charlotte’s Web – to act as prompts.
For the average user, Death Over Dinner provides a technological tool to help start a very personal conversation. For Carpenter, the evening will have more of a professional angle. Carpenter heads the clinical geropsychology lab in the Department of Psychological & Brain Sciences at Washington University in St. Louis. His research focuses on family relationships in late life, and like Hebb, he believes that the best time for people to talk about death and dying is sooner rather than later. For years, Carpenter has been building tools to help families talk about aging and end-of-life care. So, after hearing about Death Over Dinner, his first thought was, “This sounds great – but has anybody evaluated its impact?”
The friendly potluck in December may or may not lead to a full-fledged research project in which Carpenter and his colleagues examine the effects of this new website. It remains to be seen, scientifically at least, whether Death Over Dinner actually helps people think through the transition into the great unknown. In the meantime, Carpenter does have some tried-and-true strategies for helping family members as they prepare for aging and, eventually, for dying.
Why is it so hard to start the conversation?
According to Carpenter, most families wait until some sort of crisis or emergency to talk about necessary topics like healthcare, housing preferences, financial planning, general values, and final wishes for family members who are older or ill. At that point, difficult decisions have to be made quickly, and families experience a huge amount of stress. This heartbreak could be avoided if expectations and preferences were communicated earlier on, but many families avoid the topic. Why?
Part of the answer comes from a simple fear of loss. “These conversations bring up the possibility that someday these important people in your life are going to be sick or frail and eventually, one day, die,” Carpenter explains. “For people to imagine that, first of all, is uncomfortable. People don’t like to think about people they care about being infirm or more dependent than they are right now.”
Another part of the answer comes from the incredibly human tendency to avoid feeling awkward or misunderstood, though the source of the awkwardness can vary across generations. Younger people “might be afraid that they’re going to come across as morbid or interested in their inheritance or scheming in some way,” says Carpenter. Older generations often sidestep the conversations because they don’t want to be a burden to their children or think about having to rely on them for help.
Yet another issue is a lack of resources and information. Products like Death Over Dinner, a few recently released books, and an online questionnaire being piloted by Carpenter’s lab are starting to fill this gap. But, especially compared with the overwhelming quantities of information online about topics like parenting or romantic relationships, guidance about dying and end-of-life care continues to be lacking. As baby boomers get older and more and more people face these kinds of challenges at once, the absence is glaring.
What should you talk about?
After overcoming the initial discomfort about broaching the idea, some families don’t know what types of aging- and death-related topics are most important to discuss. According to Carpenter, it’s helpful to start with four big categories that cover the nitty-gritty specifics: housing, medical care, finances, and end-of-life. Whether the conversations happen over dinner, online, over the phone, or on the couch, families should get comfortable discussing a range of questions from these four areas.
While these details provide helpful and necessary information about an aging person’s wishes, Carpenter has found that a fifth, more abstract category is equally important to discuss. In order to have a meaningful conversation about death, it really helps to discuss what makes life itself meaningful.
“If riding your bicycle is a really high priority for you, and if you can’t ride your bicycle anymore that would make life not worth living to you, somebody needs to know about that,” Carpenter explains. “The idea is that people can’t talk about every possible scenario, because we can’t predict everything. Barring that, it’s better if people just know who you are and what you want, so down the road they can make choices for you that are consistent with what you would want.”
The thing about assumptions
It can be easy to assume that children, parents, or partners already know each other well enough to be able to say what makes the other family members happy or fulfilled. However, those types of assumptions are often “completely wrong,” Carpenter says.
“When you look at the data in terms of how accurate people are at predicting how other people would answer these questions, it’s all over the map. Some people are very accurate; some people are no better than pulling a random stranger off the street and guessing what their preferences are,” he explains. “And there are few reliable predictors for whether or not a person will be accurate.”
Along with Nancy Morrow-Howell from the Brown School and Susy Stark from the Program in Occupational Therapy, Carpenter teaches a popular first-year course on aging. Recently, students in the class experienced this disconnect first-hand. Parents of students in the class received an email with some of the questions that Carpenter asks in other studies. The students, meanwhile, tried to predict how their parents would respond. “When we got the answers back we gave their answers to their kids,” says Carpenter. “Students were surprised that they were not right about what their parents wanted, even though they thought they knew their parents well.”
Even those who accurately predicted their parents’ responses, like student Luisa Castaneda, gained insight from the exercise. Castaneda was surprised to learn that her mother had actually wanted to talk about these issues before. “She said she attempted to talk about end-of-life care, but I had not wanted to talk about it,” Castaneda recalls. “When we have this discussion later on, I will make sure that I am extra attentive. The class has given me a greater awareness of the complexity of aging and has put me on the right path to talking to my parents and grandparents about old age.”
The process intrigued parents as much as it did students. Carpenter received thankful emails saying the assignment helped them think about how to talk to their own parents, as well as their kids. “It really energized people in away we hadn’t entirely expected,” he says.
From the dinner table to the Internet - and back
Like the creators of Death Over Dinner, Carpenter sees some advantages to starting these conversations online. His laboratory recently completed a pilot study with about 55 families meant to evaluate an online tool for generating these types of discussions. Having the process online meant that families with children scattered around the country, and even the world, could still participate.
In some ways, the study mimicked the experience in Carpenter’s freshman class. Parents responded to questions, and adult children guessed the parents’ answers. Going beyond this initial exercise, Carpenter’s team then generated an individualized workbook with charts and explanations of where the family experienced agreement and disagreement.
Researchers from Carpenter’s lab then led some of the participating families through a half-hour discussion via teleconference. The researcher walked through the questionnaire with the families and helped them talk about the issues brought up by the workbook. Not every family received this step, because part of what Carpenter wants to find out is how the help of a facilitator affects the experience.
“If you’re just sending this out to the Internet and letting people use it however they want to use it, some families might get stuck in places where we could have helped them otherwise,” Carpenter explains. “We try to build tools into the workbook for how to have a successful conversation, but we’re trying to figure out if the teleconference is really important, or whether people can do it on their own without our help.”
Even with the help of facilitators, he admits that these conversations can be difficult. Family dynamics are complicated, and in some cases it’s hard for parents who are used to being independent to even consider their children making future decisions for the family. Carpenter distinctly remembers one older mother turning to him angrily, saying, “See? See what you made us do?” when a facilitated conversation disintegrated into a shouting match between her children. However, it is often families like these who truly need to have these types of conversations.
“It’s hard to find people who want to participate in a research project about family communication when they don’t like their family members,” Carpenter says. “People we think probably need the intervention the most are often the most challenging for us to recruit. But those are families who really need some help. Because when they get down the road and there’s a crisis, they are not well equipped to have these conversations,” he says. Partly for this reason, the eventual goal is to make the tool as widely accessible as possible.
Thanks to the families that participated in the pilot, Carpenter and his team now have a gigantic database to sort through and analyze. Initially, the results are both interesting and gratifying for everyone involved, including Carpenter himself.
“At the end of these interventions, people say that they feel, in some cases, more knowledgeable about what their family members want and what they prefer,” he says. “But more important to us, they say they feel better prepared to talk about them in the future. That’s really the outcome that we care most about. That’s what we’re hoping for.”
Images: Pop & Circumstance, Sean Garcia / Living Hope
This story first appeared in the winter 2015 issue of The Ampersand: Alumni Edition. For more news, stories, and events from Arts & Sciences at Washington University in St. Louis, please visit us online or write to email@example.com to subscribe.