Let’s Talk About Death, Baby!

salt-n-pepa

Maybe it’s because sex sells, but we doubt Salt-N-Pepa would have had such a memorable hit in the 90s if they sang “Let’s talk about death, baby!” While we’ll never know for sure, many of us remember the catchy tune they went on to perform: “Let’s Talk About Sex.” What you may not remember about the song is that it focused on safer sex, the positive and negative sides of sex, and censorship and taboos around sex in the media.

Do you remember “the sex talk” with your parents? How did that go?  We’re guessing it was a) AWK-ward!, b) confusing, and c) not Top 40 song-worthy. When we started this journey with Legacy Foundry, we aimed to target the pain points associated with our cultural taboos around death and dying. These conversations were like a dirty little secret and to be avoided at all costs. (Maybe Salt-N-Pepa were on to something by promoting a balanced talk about “all the good things and the bad things?”) So as we started asking people about their experiences talking about death, we proceeded with caution and tried not to “Push It.” *insert groan*

Many of the people we’ve spoken with are willing to talk about end of life wishes if asked directly, albeit with people they’ve only just met–us. It turns out people are ready but are much more comfortable approaching the subject when they’re not talking to their closest friends and relatives. Here are some of the things we’ve learned:

Quantity versus quality

Some of our participants struggled to answer, “Do you know when your loved one would choose to focus on quality of life rather than quantity?” While we may know that advance directive documents exist, we don’t always know what our loved ones’ preferences are. Only a handful of the participants we’ve spoken with have a clear sense of when their loved ones think treatment should shift from life-saving measures to comfort care based on their wishes. Of those who didn’t clearly know their loved ones’ preferences, about half felt they had a hunch as to their loved one’s end of life preferences based on what they knew about that person. Some indicated they had relatively young parents who would want every life-saving measure exhausted before switching to hospice or palliative care. Others felt that if their parent or spouse couldn’t engage in daily activities that brought them joy (like being in their garden), their parents would be less inclined to pursue aggressive treatment and would instead focus on keeping the quality of their remaining days as high as possible.

One possible reason for this difficulty is whether we base our decisions on treating a particular illness like emphysema or cancer rather than a broader conversation about how we’d like to spend our final days. If we focus on treating an illness, we’re making more of a clinical decision about specific interventions that can reduce symptoms and prolong life. If instead we focus on quality of life from the beginning, we can use this as a guide well in advance of a terminal diagnosis or major health event to identify treatment options aligned with our wishes. Since we don’t always distinguish the two when having the conversation with our loved ones, it can lead to a lot of guesswork and uncertainty.

Death or illness of a loved one often prompts the conversation

 Even for people who were squeamish and uncomfortable having end of life conversations with their loved ones,  two types of events tended to prompt these conversations without fail:

  1. winessing a loved one die
  2. witnessing a loved one receive treatment for a life-threatening injury or illness

For Baby Boomers, many of those who’d had the conversation had witnessed a spouse or parent’s death and learned from the experience about how to discuss their own end of life wishes with their children. After her husband passed, one participant suggested, “Talk to your children as early as possible to take some of the high emotion out of it.” Our conversations with palliative care providers echoed this. If you wait until a terminal diagnosis is given to discuss end of life wishes, decisions are often more emotional and made in response to the news. If instead you have the conversation earlier, you can take your time with it and include your loved ones when you’re not coping with the news. Of course, not everyone gets that luxury, but the doctors we’ve spoken with suggest that those who can get a head start do so.

Among Millennials and Gen Xers, none of our participants had experienced the death of a parent. For them, it was often a grandparent, aunt, or uncle who had died or been treated for a serious health condition that sparked the conversation. One participant said “My aunt had horrific cancer and having witnessed that, my parents are much more open about what their wishes are.” That said, sometimes these events prompted parents to talk to their Millennial/Gen Xer children and sometimes it was the other way around.

Location matters 

Among Gen Xers and Millennials in particular, many of the participants we interviewed lived in a different state than their parents and siblings. For them, geography was a double-edged sword. Since most participants preferred to have end of life conversations in person, they were often delayed until participants and their families were in the same location. Most of the time, this was for some special event like a vacation, wedding, or holiday. And when everyone did assemble in the same location, the conversation often felt pressured and awkward as it was out of context with the family festivities. One participant shared, “We were all together at our yearly vacation by the lake. We were enjoying beers and playing in the water and I think my dad felt pressured to finally talk about it with all of us there. It was not the right time.”

Our takeaways from this are first and foremost feelings of humility and gratitude. After just a few interviews, it became clear that these conversations are intimate and revealing even if they are had with complete strangers. Our next round of interviews will focus on how we share memories and build legacy—topics that are at the heart of our mission at Legacy Foundry. We look forward to sharing these insights with you soon!

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