Few things are as certain as the end of life, so why is it so hard to talk about?
That’s the question many families will be grappling with as they get together over the holidays with extended families, including close relatives who are getting on in years or those battling a serious health issue.
While it’s easy to put off dark discussions during festive times, it’s best to have them sooner than later, said Brian Carpenter, a psychologist who studies family relations in later life at Washington University in St. Louis.
“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,” said Carpenter, PhD, associate professor of psychological and brain sciences in Arts & Sciences. “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.”
Carpenter, who teaches courses on death and dying and the psychology of aging, says 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, he says.
As part of his research, Carpenter has been building tools to help families talk about aging and end-of-life care. 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.
Based on his research, he offers advice on five topics that families facing aging or end-of-life situations should be sure to discuss. According to Carpenter, it’s helpful to start with four big categories: 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. Here are a few examples.
- Housing. Are you happy where you live? If you couldn’t live here any longer, where would you want to go? Would you want to live with family? With friends? Nearby? Far away? What type of housing would you prefer?
- Medical care. If you were in a difficult medical situation, what treatments would you not want at all? How do you feel about your ability to tolerate pain versus taking medication that might help you feel less pain, but also less alert?
- Finances. What are your investments, assets, and liabilities? Where are your financial records located? Who would you like to have involved in managing your finances if you couldn’t do that for yourself?
- End-of-life decisions. What do you want to have happen to your body after you die? Do you want to donate your organs? What kind of service do you want? While these details provide helpful and necessary information about a person’s wishes, Carpenter has found that a fifth, more abstract category is equally important to discuss.
- The big picture. In order to have a meaningful conversation about death, it really helps to discuss what makes life itself meaningful. How do you think your life is playing out? What would be important to you as you approach the end of your life, in terms of how, with whom, and where you spend your time? What do you want to try to accomplish before you die?
“If talking meaningfully with your family and friends are a really high priority for you, and if you can’t do that any longer and that changes how you think about the quality of your life, people need to know about that,” Carpenter said.
“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.
While it’s not possible to predict everything that’s important to be discussed in these conversations, it’s important that family members know who you are and what you want.
“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,” Carpenter said. “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.”