Even though it’s an inevitability for every person on the planet, most Americans don’t like to talk about their own death. Only 22% of people in the U.S. have documented their end-of-life wishes, according to a study by VITAS Healthcare. That means that for the other 78%, it’s up to loved ones to muddle through the myriad of necessary decisions in the event of terminal illness and death.
Treating death as a taboo topic is ingrained behavior for many Americans, says Lisa Pahl, LCSW. Pahl, a hospice social worker whose intimate view of the death process in her work led to the development of The Death Deck, a game specifically created to help ease the discomfort around death discussions.
The deck’s multiple-choice and open-ended questions explore all kinds of death-related subjects, such as who you’d like to write your obituary, how often you think about death, and whether you’d choose to live forever, if given the choice.
“We aren’t typically exposed to open conversations about death and dying—that’s just how many of us are raised,” says Pahl. “People will often say things like, ‘Oh, don’t talk about that. It’s too morbid. Let’s talk about something more pleasant.’ So, we started the deck to try to help people have this conversation in a more lighthearted way. We came at it with the idea that if we can just get people to answer a couple of questions, then the conversation has begun.”
When it comes to having these types of talks with family members, Pahl has spent a lot of time thinking about how to approach it: What is important to find out? When is the right time to do it? How do you start? Ultimately, she says, the most important thing is to try.
“Avoiding the topic doesn’t keep death from happening,” Pahl says. “When I provide bereavement support to families in the months that follow a death, there’s a lot of second guessing that happens, most often because there weren’t conversations about what the dying person would want in those final days. Having those conversations proactively can actually bring you closer and strengthen relationships.”
Here’s how to get started.
Before you sit down with your parents, partner, or other important loved one, take stock of what details would be helpful to know in the event of their end-of-life care or death. At the most basic level, they need advanced directives (the legal document that outlines your wishes for medical care if you’re unable to communicate them yourself), a living will and trust, and durable power of attorney, as well as access to account passwords. But beyond these big preparations, there are other questions to consider, such as:
Where do they want to live when they can’t take care of themselves?
What are their feelings related to feeding tubes and mechanical ventilation?
Who do they want to make health care decisions for them when they can’t?
What do they want to happen to their body after they die?
Would they like a funeral, and if so, what would they like it to look like?
“I talk to many grieving people who have some anger at their relatives for leaving so much left undone and undecided after their deaths,” says Pahl. “It’s a true gift for family members to be able to follow wishes instead of making decisions on someone else’s behalf.”
Pahl says for death-avoidant loved ones, TV, movies, articles, books, and podcasts can be soft starters for curious exploration of death-related topics. Using an anecdote, whether fictional or real life, can ignite conversation without putting someone on the spot.
“My mom watched This is Us when it was on, and several episodes did a great job with the dying process and what it looked like in a family,” says Pahl. “After advanced care planning was on one episode, I called her the next day, and found out she had a lot of opinions on what she would do differently in the same situation.”
Stories of neighbors and relatives can serve a similar purpose—an aunt with a cancer diagnosis, or a co-worker who has a stroke and is put on a ventilator, for example. These provide an opportunity to wonder aloud with loved ones what you would do in the same situations.
“I try to encourage people to make statements about themselves and talk about their thoughts on the topic first because it allows the other person to enter into the conversation by either aligning with you or disagreeing with you, which can be an easier entrance to conversation,” says Pahl.
The thought of leaving loved ones can be so painful for some that avoiding the topic feels like care and love. A redirect that takes the focus off their needs and approaches it as a loving gift for others may help.
“Sometimes parents especially will respond when they understand that knowing these things is helpful for you, and a way to let you care for them,” says Pahl. “You can say, ‘I love you and want to care for you well as you age, and I want us to have this conversation so that I know how you want me to do that.’”
If you’re going to ask your loved ones what they want in the event of their imminent end and death, you should also have your own answers ready yourself. Complete an advanced directive of your choice and bring it over to talk about with your family.
“I really encourage people to be prepared to talk about these points themselves and come from that standpoint,” says Pahl. “Because the truth is any of us could die at any time. And so, it’s also good for you to have talked to your family members about your own wishes.”
If they haven’t already done their advanced directive, it may get the wheels turning. And at the very least, it will put you squarely inside a conversation that will give you insight to their personal choices.
When it comes to talking about their death, some people will continue to resist even the most creative and gentle invitations. In the end, the most important thing is to preserve the relationship while they’re alive, even if that means giving up on having the conversation for now.
“We can’t control anyone else,” says Pahl. “I think all you can do then is focus on preparing yourself for what you’ll need to do so you’re as ready as you can be when the time comes.”
