Why Engaging Millennials in End of Life Planning Matters, and How to Do It

Last week, I had a chance to speak at the National Summit on Advanced Illness Care in Washington, DC, hosted by the Coalition to Transform Advanced Care. The Summit brought together hundreds of people working to improve the lives of the seriously ill, and to ensure that their wishes are known and respected. The room included doctors, policymakers, patients, researchers, and advocates: People who have been instrumental in seeing to it that more and more Americans die in hospice, rather than in ICUs. 

I was asked to speak on the opening panel about "Engaging Multiple Generations". Moderated by Pulitzer-Prize-winning-journalist-turned-social-entrepreneur (/hero) Ellen Goodman, founder of The Conversation Project the panel aimed to capture key strategies for changing how people think about and plan for end-of-life care.  

Initially, I wasn't sure what I was doing up there: Our community is, for the most part, comprised of people who find us after a loss. We don't actually spend a lot of time talking about death and dying, let alone our own end-of-life wishes; our conversations tend to be more present-tense. I know enough to know advance directives are a good idea, but haven't bothered to figure out the process. I seem to remember signing something at an event once: Was it a Five Wishes form? Good luck ever finding that again. I've heard of people hosting parties in which they each sign living wills, but even now, my gut response is "unfun". The idea of talking to my family members about their end-of-life wishes falls under the category, "yeah should do that...someday". My hesitation boiled down to one nagging question: Why bother engaging millennials in a conversation about end-of-life planning and advanced care in the first place?

And then I realized that was the problem. We hear from people all the time who've lost siblings or partners or friends their same age, or who expected to have decades more with their parents; people who've spent months or years as caregivers, watching a person they love battle advanced illness. Diagnosed at the age of 50 with Stage IV lung cancer, my mom insisted on talking openly about what was happening, and spent the final four months of her life in hospice care. And yet, here I was, still subject to the myth that death and dying affects people only when they’re older.

The reality is that people die before they should, and The Conversation isn’t just something for Baby Boomers. Two million Americans under the age of 30 lost a parent or sibling in the last two years. One in seven will lose a parent or sibling before they’re 20.
The scar tissue left by a bad death can have hugely devastating consequences at any age, but that’s particularly true for people at the moment they're poised to launch careers and families of their own, and to find their footing in the world. So if we can’t avoid death, it’s important that we do everything we can to avoid bad deaths. 

From the start, we’ve been completely overwhelmed by demand. Since opening our doors, we’ve grown to 40+ tables in 18 cities and counting, powered by over 65 hosts and hundreds of Dinner Partiers. The reason? It turns out that it’s actually a lot easier to spark a conversation around death and dying and end-of-life care than we make it out to be, for two reasons:

  1. Everyone has a story. It’s obviously easier to talk about what you know. So while most millennials haven’t lived through advanced illness themselves, or taken care of an aging parent, almost everyone knows someone who has. Starting a conversation about how we show up to each other as friends is an entry-point to encouraging people to rethink how they prepare for it personally. 
  2. We’re seeing this big reaction against overwhelming banality. Amidst the Kardashians and cat videos, we’re finding that young people are really hungry to talk about deeper questions about life and death and how to do both better. The problem is not that people don’t want to talk about these issues: It’s just there isn’t the right environment to do so.

Okay, so it's important. Check. Then the challenge becomes how: How do you actually get our gen through the door? 

We're guessing that the rules for engaging a younger crowd in conversations about loss also apply to advanced care planning and encouraging them to initiate conversations about end-of-life wishes--whether their own or those of the people they love. Three key tips come to mind: 

  1. Where possible, keep it peer-to-peer. What we’re seeing is a mass revolt against institutions of any kind. There was a Pew study last Spring that showed that millennials are less likely to associate themselves with organized religion or a particular political party than any generation before them. But when you dig deeper it turns out the cause of that isn’t apathy; it’s mistrust. Millennials are seeking out in each other what they previously found in institutions. More than 50% of those who reach out to us heard about it from a friend. For us, it’s been a huge draw that people they know or relate to are leading the conversation, so they’re much more willing to share it with their friends. Turns out that less control is actually better than more control, and that humans are better at being human than we give them credit for.
  2. Let 20-30-somethings be 20-30-somethings. To address childhood bereavement, the grief community made a marked shift over the last decade toward creating spaces where kids can be kids: so you see a lot of summer camps for grieving children and adolescents, and art and games to help children process and open up about their experiences. What we need are spaces where 20- and 30-somethings can be 20- and 30-somethings. 
  3. Make it fun, and don’t fear snark. Too often, we think serious matters require serious speak. We’ve found that the same rules of the internet apply: Don’t speak like a robot, and don’t use photos of white doves or ocean waves. For us, that translates into using the phrase “abstain from bullshit” in our manifesto, and insisting that everything we do be a party.

As our friends at The Conversation Project would say: Let's have dinner and talk about death, y'all.