Talking About End-of-Life Wishes
While we’ve started having discussions about end-of-life care and Soraya’s wishes, I hadn’t really thought about what that would look like for the rest of my family until recently.
I’m a designated healthcare proxy for my dad, yet we’d never had a conversation about his wishes. I’d just assumed he’d want whatever I thought was important—but what if he didn’t? And what would Yasmeen and Leena want? Just because they are young and healthy, should we not normalize talking about having autonomy at any age, especially when we have been doing that for Soraya?
Still, it’s tough to know how to navigate these sensitive conversations... until I found The Conversation Project. The goal of The Conversation Project is to help everyone talk about their wishes for care through the end of life so that those wishes can be understood and respected. They offer free tools, guidance, and resources to make these difficult conversations easier—and I can wholeheartedly say they DO exactly that after using their Conversation Starter Guide in Hawaii!
Turns out, even just printing the guides sparked an interesting conversation! As a hotel employee in Hawaii kindly printed them for me, I told her how much I loved the hotel and what it provided on our Make-A-Wish trip a few years prior. She saw what I was printing and said “Now it makes more sense.” I told her the purpose was not just to talk about Soraya’s end-of-life wishes, but the whole family’s.
She then shared with me that she knows what it’s like to be a sick kid as she’d had a brain tumor as a child. She said her grandfather was in medicine and made all the medical decisions for everyone in the family. However, when it came to her own parents’ death, she wished they could’ve talked more about what they would want. She was tearful as she told me that these are really important conversations to have.
Talk about validation!!
On that note, I brought the guides to breakfast and shared my desire to know everyone’s thoughts—not just Soraya’s—on their wishes for end-of-life care. I requested that my immediate family, mom, and dad fill out the guides, and invited our extended family and nanny Kaytlin to fill them out if they wanted to. Everyone at the table took a packet!
We started discussing our answers the next morning. The results were surprising—there were so many different opinions on things that I truly felt were universally agreed on (ie like that how I want things done would of course be how everybody else would want them done!!! NOPE 😅).
We learned a LOT from these conversations, and not just about medical decisions. I learned that a good day for Soraya is spending time with her best friends, Courtney and Josh, and she wants to spend as many of her days ahead with them as she can. It reminded me that Soraya really is a typical teenager at heart, even if her body functions differently than most teens. She just wants to be with her friends!
I was surprised by how open everyone was to having these conversations. I mean, no one necessarily WANTS to talk (no less think) about their life coming to an end and what they’d want that time to look like. It’s hard! But ultimately, everyone agreed that these conversations were important and they would like to do it again.
Grateful for tools like this to have these tough conversations. Check them out and make it your own.
As The Conversation Project says, “We believe that the place for this to begin is at the kitchen table—not in the intensive care unit—with the people who matter most to us, before it’s too late.” The time is now ❤️